Our first day home. Tom is all over all of us about keeping the house clean. Riley sorts out his pills and takes his dose with a little yogurt. I hear Riley use the bathroom, but he doesn't flush. I call out "flush and wash". He says "come here mom, you need to look at something". The tone of voice got me up quickly and to the bathroom. There is red in the toilet. Riley has peed blood. I frantically look for the number for the clinic. We have yet to post it handy. I call. The doctor on call says to have Riley drink a lot of fluids and if he still is peeing blood, call back. The next time he goes to the bathroom, it is more natural in color. Tom looks up on line some possible causes. We decide it was dead red cells being expunged from his kidneys. But I will definitely add it to our list of questions for the doctors on Monday.
My brother and his family are expected today. They come and play. Riley has a delightful time. My sister in law and I sit outside in the sun. It feels so good to be outside after all that confinement. We even pull a few weeds. I will have to tackle the rest of the yard eventually.
Tom told me the guys who worked on my yard last summer stopped by to see if I wanted them to do any more. I think I have blown my budget though, on Riley's new mattresses. Riley says the new mattress might be a little hard, but he can stand it. He appreciates that they are new. His room looks great.
My sister in law's parents stop by to give us hugs. It turns out that they have had some family experience with bone marrow transplants. They have a packet for Tom and me on the subject. Tom, and Bill and my brother spend the afternoon watching the gold medal hockey game and discussing Riley's illness. Tom is impressed by the amount of knowledge Bill has on the subject and enjoys the discussion. Later after everyone leaves Tom reads the information packet they had brought.
He is beginning to think we may need to readdress the bone marrow transplant. I tell him three months, we need to give this treatment time to work. The doctor said three months. My sister said I really have a "Sophie's Choice" going . Its true. We are damned if we do and damned if we don't. I think back on the afternoon and the issues that my brother's in laws had shared. They had made it through some horrible and tough times. They survived. People are resilient. We can survive this.
I try to hand off a plant to my sister in law. I would like to get all the plants out of the house. Tom wants to keep it for sentimental value. It was sent to him when his father died last month.
It is funny what sets us off these days. Some times we are such a team and then sometimes the cracks show where the stress points are. Tom is still grieving his father and I forgot. I still want to find homes for the plants but just not that one, not yet anyway.
At 6:00 pm Tom reminds Riley of his injection. Riley likes the lidacaine and it has to sit for a half hour to numb the skin. At 7:00 pm we warm the syringe in our hands and Riley sticks himself, counting aloud to 5 before pulling it out, just like the nurses showed him.
We gathered all the dirty dishes from around the house at bed time. It is amazing how they hide and accumulate in one day. I sent most of the left over cake with the neighbor boy. He stopped by this evening to check on Riley. He is one of the most thoughtful children I know for that age. He has a fleece blanket for a gift. I let the boys play, but it is a school night so at 8:00 I send him home.
Trevor did have homework so whining the first ten minutes he sits at the dining table and begins his math. I have a copy of missing assignments. We are able to match which ones still need to be done and which are duplicates. In 45 minutes he gets it done. But it did take us a good ten minutes of "what about Riley? why isn't he doing his work?" and Tom finally stepping in for Trevor to just begin.
I listen to the call from the tutor finally. She left it yesterday. I give her a call. I discuss Riley's condition with her. We make an appointment for Wednesday at 1:00 pm for two hours. I explain how dangerous germs are to Riley and how careful we must be. I tell her about the disease so she knows what she will be dealing with. I am so glad that the school is willing to work with me. Riley has appointments twice this week, so school will have to work around it every week. She is willing to be flexible. I warn her if she thinks she is the least bit sick to please just reschedule. She understands and will work with us. She just has to be able to get 5 hours a week in during each month, for billing purposes, twenty hours a month.
I check Trevor's work and staple his math together, less likelihood of losing papers that way. I check for his name and he has to add it to the top of a few pages. I would like to tackle another class tomorrow if possible.
9:00 pm I cut the boys off the computer and tell them brush teeth, bed time. Tom wipes down the kitchen and we settle in. My chest feels tight now all the time. I just wait for the next shoe to fall, the next nose bleed. That loose tooth is still in Riley's mouth. I can't wait for clinic tomorrow. I feel so much safer having him in the hospital. His new tutor had asked why isn't he in the hospital. I said they just can't keep him locked up forever, not unless he is sick or they are treating him. But what are we going to do? Well, we don't really have to think too far ahead any way. Just one month to three months, then we see where we are.
I asked the doctor at checkout yesterday about our summer plans. She said don't cancel anything yet. There is time. One to three months of time, in my mind, May. We wait for May. But with all those platelets transfusions I pray we have until May. Tom is thinking bone marrow now. The more he reads, bad and harsh as it is, long term it may be Riley's best shot at life.
Sunday, February 28, 2010
The room party
We are loud and boisterous. The children break out the candy and chips, and sandwiches. One of my friends just got back from the Olympics. She had loaded her children into the minivan and headed north. She had been surprised at how easy it was. The tickets for her toddlers were expensive at $75 a piece. But going to the Olympics was on her bucket list. They had gone to the curling event. she also showed us her pictures of a new rental she had purchased in Vegas, a house only 3 years old in a gated neighborhood for a rock bottom price.
The women talk. I am so happy but also nervous. Is the house clean enough? Tom was supposed to get things done yesterday, but he talked to a friend instead and had a quiet time. He admits he has been caught "flat footed" he says . Thank goodness one of his sisters drops by to help him. My friends slowly trickle away, leaving just Riley's oldest best friend and his mom. She is politically active and wants to pick my brain on insurance.
I tell her I want medical IRAs funded by 401ks. I dislike flexible spending with its use it or lose it
plan. If it would accumulate and roll over each year it would make a lot more sense. She asks about minimum wage earners. We agree children through high school can be covered under a government plan. But that already exists in Oregon. Why do we need to legislate it more? I like catastrophic insurance with a high deductible, low premiums. The kind only needed in cases like Riley's or for really serious issues like heart attacks or car wrecks. Fund it the same way as social security with the premium taken from pay checks. Kind of an insurers insurance plan. Every day stuff like ear infections and colds should be under a totally separate plan, the flexible spending or IRA. There are programs and clinics already in place for the low income, I argue. She argues for the protection of the poor and common man. We enjoy the discussion and debate.
She also sets Riley up with a skype account so he can video phone his friends. We talk about how he could attend his classes through this during the week. The boys sit two feet away from each other and talk to their camera pictures of each other, laughing at the echo.
My mom arrives and starts packing up the room. There is a huge accumulation of stuff from over a week of living in one room. We ,Tom and I, had brought in a lot of things to make us comfortable and had taken nothing home. We discuss getting the dog. she agrees to bring him over this evening, I'll put him in the car and he can wait until we are discharged.
My stepmom arrives with another dear friend and entertains Riley while we all carry a load of bags and things down to my car. Riley is contented lying in the bed. We come back up, the room seems so quiet now that everyone from the afternoon party has left. My family chats for a while with me, pleased with the news Riley is coming home.
All through the day, Riley has been receiving his last dose of ATG. It ends and the red cells finally arrive. The grandparents leave. Since this is Riley's first red transfusion, the nurse hangs out with us. She answers my questions about Riley's treatment and drugs. She gets me copies of the side effects to watch for at home. She is very calm and informative. She is so nice, its subtle, you almost forget she is really hanging out to see if Riley will have a reaction to the Red.
All of a sudden Riley turns pink, a Rosy color he has not been in months, I realize now. It is so dramatic, the nurse takes his vitals. He is fine, but it is definitely a change of color. The Red comes in two doses, each one takes two hours. The nurse tells me it will be closer to 9:00 pm before Riley will be done and discharged. I am just running on adrenaline.
We finally reach discharge stage. The papers are brought with more home instructions. I make two more trips to the car. I even fill a wagon full of bags and boxes. The car is full and I am driving the Jeep, which has huge cargo room. Tom feels its the safest car and requested I take it. The last trip I have is a giant bouquet of aluminum balloons, one of Toms sisters had sent. It is so big I am not sure I can get them in the car, but Riley has insisted we take them. He wants to show them to his brother.
I am leaving the isolation ward, but have picked up a small follower. A little boy has seen the balloons and is trying to follow me out, escaping the ward. His father is trying to stop him. Outside the ward is his family, Grandma and another woman and a little friend. neither child is more than 3. As I walk towards the elevators I hear the children begin to cry. I turn around and go back. Using my car key I cut a few balloons away and hand each child a balloon. A nurse from the ward has joined them to assist in returning the runaway. I give her a couple more saying that I am sure she knows someone who might need them. I head for the elevator with the more manageable bouquet. They are still a tough fit in the car, but I get them in.
Riley wants a wheel chair ride. The nurse says he can walk. He says "What about hospital policy?" She tells him he is fine. After walking into the ER on Wednesday night February 17, we are walking out on the 27th at the same time. Bucky is quietly waiting for us, thrilled to be with us again. I have asked if Riley should sit in the back or front seat. The nurse said it didn't matter so he sits in front with the dog on his lap. We loop down and out of the parking garage to the exit and leave the hospital behind us.
We pass the Chart House were Tom and I snuck out to dinner. The fancy cars pack the parking lot. I point the place out to Riley, thinking how our dirty jeep with a roof box must have looked next to that new red porche we parked next to the other night. I am beginning to feel the day. Riley says he is tired. All he did all day was sit in bed and play with his play station with friends. But it was a long day regardless.
Tom has bought a cake. It says "Welcome home, Finally". Trevor helps me unload the car. It takes multiple trips with just the two of us and no cart. Riley brings in the balloons, and immediately notices they are a few shy. I tell him they wouldn't all fit so I had to give a few away. Its such a big bouquet he doesn't mind. Tom's clean house is now littered with packages. He shows Riley the meds he picked up from the pharmacy. They talk about them, making sure they both know what is to be taken and when.
The boys sit down to watch TV, but Riley shortly gets up and says he is tired and going to bed. Tom sneaks out to smoke a cigarette outside. I follow him. He as a glass of wine. I swipe it and take a sip. He gets another glass. We sit in the dark on our patio, going over the events of the week and our hopes for Riley in the next couple of months. Tom was torn that had we known of the good donor we might have just gone for it, but he says he ran into the doctor outside the ward this week and spoke to him about it. The doctor said that the treatment for bone marrow is a lot rougher on Riley than what Riley just went through. So we are content with trying this first. I couldn't resist asking the doctor if Riley's numbers trying to hold on this week were the ATG working already. He said "What did I tell you?" I responded "One month minimum, but more likely three months." He smiles and nods. I pray it works.
Meanwhile Tom and I sit in the dark outside. Tom opens another bottle. I swear I only had three glasses, but Tom told me I woke in the middle of the night and asked for the vomit bowl. He told me he said I could make it to the bathroom. I was a big girl. I don't even remember the conversation taking place. What I do know is I woke this morning with a rip roaring headache and still in my clothes from yesterday. But I am glad to be home.
The women talk. I am so happy but also nervous. Is the house clean enough? Tom was supposed to get things done yesterday, but he talked to a friend instead and had a quiet time. He admits he has been caught "flat footed" he says . Thank goodness one of his sisters drops by to help him. My friends slowly trickle away, leaving just Riley's oldest best friend and his mom. She is politically active and wants to pick my brain on insurance.
I tell her I want medical IRAs funded by 401ks. I dislike flexible spending with its use it or lose it
plan. If it would accumulate and roll over each year it would make a lot more sense. She asks about minimum wage earners. We agree children through high school can be covered under a government plan. But that already exists in Oregon. Why do we need to legislate it more? I like catastrophic insurance with a high deductible, low premiums. The kind only needed in cases like Riley's or for really serious issues like heart attacks or car wrecks. Fund it the same way as social security with the premium taken from pay checks. Kind of an insurers insurance plan. Every day stuff like ear infections and colds should be under a totally separate plan, the flexible spending or IRA. There are programs and clinics already in place for the low income, I argue. She argues for the protection of the poor and common man. We enjoy the discussion and debate.
She also sets Riley up with a skype account so he can video phone his friends. We talk about how he could attend his classes through this during the week. The boys sit two feet away from each other and talk to their camera pictures of each other, laughing at the echo.
My mom arrives and starts packing up the room. There is a huge accumulation of stuff from over a week of living in one room. We ,Tom and I, had brought in a lot of things to make us comfortable and had taken nothing home. We discuss getting the dog. she agrees to bring him over this evening, I'll put him in the car and he can wait until we are discharged.
My stepmom arrives with another dear friend and entertains Riley while we all carry a load of bags and things down to my car. Riley is contented lying in the bed. We come back up, the room seems so quiet now that everyone from the afternoon party has left. My family chats for a while with me, pleased with the news Riley is coming home.
All through the day, Riley has been receiving his last dose of ATG. It ends and the red cells finally arrive. The grandparents leave. Since this is Riley's first red transfusion, the nurse hangs out with us. She answers my questions about Riley's treatment and drugs. She gets me copies of the side effects to watch for at home. She is very calm and informative. She is so nice, its subtle, you almost forget she is really hanging out to see if Riley will have a reaction to the Red.
All of a sudden Riley turns pink, a Rosy color he has not been in months, I realize now. It is so dramatic, the nurse takes his vitals. He is fine, but it is definitely a change of color. The Red comes in two doses, each one takes two hours. The nurse tells me it will be closer to 9:00 pm before Riley will be done and discharged. I am just running on adrenaline.
We finally reach discharge stage. The papers are brought with more home instructions. I make two more trips to the car. I even fill a wagon full of bags and boxes. The car is full and I am driving the Jeep, which has huge cargo room. Tom feels its the safest car and requested I take it. The last trip I have is a giant bouquet of aluminum balloons, one of Toms sisters had sent. It is so big I am not sure I can get them in the car, but Riley has insisted we take them. He wants to show them to his brother.
I am leaving the isolation ward, but have picked up a small follower. A little boy has seen the balloons and is trying to follow me out, escaping the ward. His father is trying to stop him. Outside the ward is his family, Grandma and another woman and a little friend. neither child is more than 3. As I walk towards the elevators I hear the children begin to cry. I turn around and go back. Using my car key I cut a few balloons away and hand each child a balloon. A nurse from the ward has joined them to assist in returning the runaway. I give her a couple more saying that I am sure she knows someone who might need them. I head for the elevator with the more manageable bouquet. They are still a tough fit in the car, but I get them in.
Riley wants a wheel chair ride. The nurse says he can walk. He says "What about hospital policy?" She tells him he is fine. After walking into the ER on Wednesday night February 17, we are walking out on the 27th at the same time. Bucky is quietly waiting for us, thrilled to be with us again. I have asked if Riley should sit in the back or front seat. The nurse said it didn't matter so he sits in front with the dog on his lap. We loop down and out of the parking garage to the exit and leave the hospital behind us.
We pass the Chart House were Tom and I snuck out to dinner. The fancy cars pack the parking lot. I point the place out to Riley, thinking how our dirty jeep with a roof box must have looked next to that new red porche we parked next to the other night. I am beginning to feel the day. Riley says he is tired. All he did all day was sit in bed and play with his play station with friends. But it was a long day regardless.
Tom has bought a cake. It says "Welcome home, Finally". Trevor helps me unload the car. It takes multiple trips with just the two of us and no cart. Riley brings in the balloons, and immediately notices they are a few shy. I tell him they wouldn't all fit so I had to give a few away. Its such a big bouquet he doesn't mind. Tom's clean house is now littered with packages. He shows Riley the meds he picked up from the pharmacy. They talk about them, making sure they both know what is to be taken and when.
The boys sit down to watch TV, but Riley shortly gets up and says he is tired and going to bed. Tom sneaks out to smoke a cigarette outside. I follow him. He as a glass of wine. I swipe it and take a sip. He gets another glass. We sit in the dark on our patio, going over the events of the week and our hopes for Riley in the next couple of months. Tom was torn that had we known of the good donor we might have just gone for it, but he says he ran into the doctor outside the ward this week and spoke to him about it. The doctor said that the treatment for bone marrow is a lot rougher on Riley than what Riley just went through. So we are content with trying this first. I couldn't resist asking the doctor if Riley's numbers trying to hold on this week were the ATG working already. He said "What did I tell you?" I responded "One month minimum, but more likely three months." He smiles and nods. I pray it works.
Meanwhile Tom and I sit in the dark outside. Tom opens another bottle. I swear I only had three glasses, but Tom told me I woke in the middle of the night and asked for the vomit bowl. He told me he said I could make it to the bathroom. I was a big girl. I don't even remember the conversation taking place. What I do know is I woke this morning with a rip roaring headache and still in my clothes from yesterday. But I am glad to be home.
Home/party
The party in the room continues. Some have to leave, but others can stay for a while. the bucket of food is opened and the candy and gum is shared. Riley eats some of the sandwiches. Riley is set up with a skype account so he will be able to talk to his best friend. We talk
Hangovers
Last night I had all these brilliant titles for my blog fly through my head. Today I woke up in my cloths with a nauseated feeling, looking for pain killers. But lets start at the begininning. yesterday, Saturday, we had company. Riley barely ate any breakfast,. he is not into hospital food at all. Thanks to my sister and her daughter for Baskins and Robins the night before, Riley is not wasting away. Pills go down with yogurt. No problem these days.
The doctors come through on rounds. They surprise us with the news that Riley can go home at seven tonight. They will give him platelets this morning and red blood later then discharge us since Riley is responding so well. They will want to see us at Dornbechers for clinic on Monday though.
I feel a little guilty. The doctor who originally diagnosed Riley at home is semi retiring in a couple of months. But I really liked him and had expressed to the Dornbecker doctor my wish that he would take the case, take Riley as a patient. The Dornbecher doctor has put on the full court press. He has called our clinic several times and spoken to this doctor pleading our case. Riley's original doctor is a nice pediatrician, but I just loved this sharp, smart intelligent and experienced doctor who initially took one look at Riley and ran to hold the labs . Nothing is better than an experienced doctor. Even if he is part time. I thought he might find our case interesting enough to take. Under duress and pressure he has agreed to be Riley's doctor. Read the labs and follow up, thanks to pressure from Dornbecher doctor.
So we are set up to go home. Then the company arrives. Every one arrives at the same time. My brother and his son ride up the elevator with one of my best friends and Riley's very oldest and best friend. They chat and realize they are visiting the same people. My girlfriend from longview arrives with her daughter, the another girlfriend from longview arrives baring gifts. She brings a big bucket of toys and junk food, candy chips subway sandwiches. Riley is in heaven
with all the attention.
The kids play playstation 2. My brother tells me my nephew has a tennis match in Gresham . I am dieing to see the boy play. He is quite talented and my brother is able to give him the opportunity to become great eventually. The boy is competitive and driven. I would love to see a game. But not today, today I am still at the hospital with Riley. I am sure the doctors think it strange that I have all these people in the room while they talk to me. But there is nothing to hide and these are some of my nearest and dearest friends and family. I would just have to repeat everything to them after the d0ctors left anyway. The news is so good, it should feel like a party.
The only part I hesitate over is the red cells. Today they must happen in order to go home. No more putting it off one more day. Platelets came this morning before everyone arrived. I was even impress by the speed they set on the injection. Ten minutes it seemed and the platelets were done. Riley was on a drip though of fluids to facilitate it, so he is tethered to his coat rack. he has called it his Christmas tree.
It makes for good drama for everyone. When ever he gets out of bed to use the bathroom everyone makes room. I am grateful he is going into the bathroom and not using his corner by the door like he usually does when its just me in the room. He looks so well. without the tree you might wonder what he is doing in this isolation ward.
There are not enough remotes for my nephew to join in the kids games so my brothers makes arrangements to see us at home, having heard the good news. He slips away with my nephew.
The teen agers play on, while all us mom's talk. I have a delightful time. Riley looks good and the plan is to be home tonight.
I then realize I haven't told Tom the change of plans. He still thinks Riley is coming home Sunday. I quickly call him. He freaks. What? We're not ready!. With the noise in the room, he makes me go out in the hall where he has my undivided attention to hear the list of questions he want me to ask before discharge. OK
The doctors come through on rounds. They surprise us with the news that Riley can go home at seven tonight. They will give him platelets this morning and red blood later then discharge us since Riley is responding so well. They will want to see us at Dornbechers for clinic on Monday though.
I feel a little guilty. The doctor who originally diagnosed Riley at home is semi retiring in a couple of months. But I really liked him and had expressed to the Dornbecker doctor my wish that he would take the case, take Riley as a patient. The Dornbecher doctor has put on the full court press. He has called our clinic several times and spoken to this doctor pleading our case. Riley's original doctor is a nice pediatrician, but I just loved this sharp, smart intelligent and experienced doctor who initially took one look at Riley and ran to hold the labs . Nothing is better than an experienced doctor. Even if he is part time. I thought he might find our case interesting enough to take. Under duress and pressure he has agreed to be Riley's doctor. Read the labs and follow up, thanks to pressure from Dornbecher doctor.
So we are set up to go home. Then the company arrives. Every one arrives at the same time. My brother and his son ride up the elevator with one of my best friends and Riley's very oldest and best friend. They chat and realize they are visiting the same people. My girlfriend from longview arrives with her daughter, the another girlfriend from longview arrives baring gifts. She brings a big bucket of toys and junk food, candy chips subway sandwiches. Riley is in heaven
with all the attention.
The kids play playstation 2. My brother tells me my nephew has a tennis match in Gresham . I am dieing to see the boy play. He is quite talented and my brother is able to give him the opportunity to become great eventually. The boy is competitive and driven. I would love to see a game. But not today, today I am still at the hospital with Riley. I am sure the doctors think it strange that I have all these people in the room while they talk to me. But there is nothing to hide and these are some of my nearest and dearest friends and family. I would just have to repeat everything to them after the d0ctors left anyway. The news is so good, it should feel like a party.
The only part I hesitate over is the red cells. Today they must happen in order to go home. No more putting it off one more day. Platelets came this morning before everyone arrived. I was even impress by the speed they set on the injection. Ten minutes it seemed and the platelets were done. Riley was on a drip though of fluids to facilitate it, so he is tethered to his coat rack. he has called it his Christmas tree.
It makes for good drama for everyone. When ever he gets out of bed to use the bathroom everyone makes room. I am grateful he is going into the bathroom and not using his corner by the door like he usually does when its just me in the room. He looks so well. without the tree you might wonder what he is doing in this isolation ward.
There are not enough remotes for my nephew to join in the kids games so my brothers makes arrangements to see us at home, having heard the good news. He slips away with my nephew.
The teen agers play on, while all us mom's talk. I have a delightful time. Riley looks good and the plan is to be home tonight.
I then realize I haven't told Tom the change of plans. He still thinks Riley is coming home Sunday. I quickly call him. He freaks. What? We're not ready!. With the noise in the room, he makes me go out in the hall where he has my undivided attention to hear the list of questions he want me to ask before discharge. OK
Saturday, February 27, 2010
Saturday
Over a week in the hospital, Riley woke this morning with a sore throat and a slight fever.
He slept unteathered last night. He drinks enough water himself that he didn't have to have the fluid IV. But every time they stop the anti biotic fluids within 12 hours he gets symptoms of a cold. How can we go home?
Riley isn't eating much. I wish the hospital would serve breakfast for dinner. Riley is most energetic in the evening. He likes breakfast food best. His white cell count is 0.3, hemoglobin is 7. 1, platelets are 7 this morning. The nurse put the platelets in at high speed this morning. If they go in fast the body has less opportunity to realize its being invaded and react. The ATG goes in the same way. We started with an eight hour dose, to make sure he didn't have any sever reactions, now Riley gets the same amount in four hours.
I have my days confused. I told my brother I thought everyone was in school, thinking it was Friday. He is coming to visit us. I love all the visitors. They brighten an otherwise boring existance. I am so glad my brother is coming, he and his family light up a room. He couldn't make it to see my dad last summer, and I know he regretted it. This time he brought the whole family to town to see Riley. Riley is loving all the attention.
The platelets went in and Riley is perking up and feeling better. He hastles the nurse, cracking bad jokes. I can't help but be nervous all the time. I used to blow off the children's colds unless they were really feverish or vomiting. A dose of Tylenol and off to school. Now the slightest incling of a runny nose and I jump for the doctor.
The room is done at home. We just have to tidy up the house again. Its amazing how quickly it gets messy.
He slept unteathered last night. He drinks enough water himself that he didn't have to have the fluid IV. But every time they stop the anti biotic fluids within 12 hours he gets symptoms of a cold. How can we go home?
Riley isn't eating much. I wish the hospital would serve breakfast for dinner. Riley is most energetic in the evening. He likes breakfast food best. His white cell count is 0.3, hemoglobin is 7. 1, platelets are 7 this morning. The nurse put the platelets in at high speed this morning. If they go in fast the body has less opportunity to realize its being invaded and react. The ATG goes in the same way. We started with an eight hour dose, to make sure he didn't have any sever reactions, now Riley gets the same amount in four hours.
I have my days confused. I told my brother I thought everyone was in school, thinking it was Friday. He is coming to visit us. I love all the visitors. They brighten an otherwise boring existance. I am so glad my brother is coming, he and his family light up a room. He couldn't make it to see my dad last summer, and I know he regretted it. This time he brought the whole family to town to see Riley. Riley is loving all the attention.
The platelets went in and Riley is perking up and feeling better. He hastles the nurse, cracking bad jokes. I can't help but be nervous all the time. I used to blow off the children's colds unless they were really feverish or vomiting. A dose of Tylenol and off to school. Now the slightest incling of a runny nose and I jump for the doctor.
The room is done at home. We just have to tidy up the house again. Its amazing how quickly it gets messy.
Friday, February 26, 2010
First self inflicted shot
Riley slept most of today to the point where I got nervous, all afternoon. We have been postponing the red cell transfusion. We really want to wait until our last day to get the full benefit at home.
He finally woke and was refreshed. The nurse even unplugged him from his coat rack. We spent the late afternoon in the game room. I lost at a game of chess, but not until the last pieces for both of us. I made an alphabet necklace with Riley's name, and all his family including his Aunts and Uncle and cousins. We had a great time.
Riley decided on a bagel and cream cheese for dinner and ate it all . He asked for a second one.
After dinner the nurse came in with the evening blood booster shot. Riley cleaned his leg. I encouraged him to do his own shot. He took the needle and shoved it into his leg and injected himself. No fuss at all. He was so brave.
Tomorrow he will get platelets and red blood so he can be fresh and energetic at home.
His white cells are .3, red cells were 7.3, and platelets were at 20 after yesterdays transfusion.
It is his last treatment of ATG tomorrow. He will continue with the blood booster once a day and the cyclosporin twice a day for a year and the prednisone. We hold our breaths and wait. We wait a month minimum for a sign.
He finally woke and was refreshed. The nurse even unplugged him from his coat rack. We spent the late afternoon in the game room. I lost at a game of chess, but not until the last pieces for both of us. I made an alphabet necklace with Riley's name, and all his family including his Aunts and Uncle and cousins. We had a great time.
Riley decided on a bagel and cream cheese for dinner and ate it all . He asked for a second one.
After dinner the nurse came in with the evening blood booster shot. Riley cleaned his leg. I encouraged him to do his own shot. He took the needle and shoved it into his leg and injected himself. No fuss at all. He was so brave.
Tomorrow he will get platelets and red blood so he can be fresh and energetic at home.
His white cells are .3, red cells were 7.3, and platelets were at 20 after yesterdays transfusion.
It is his last treatment of ATG tomorrow. He will continue with the blood booster once a day and the cyclosporin twice a day for a year and the prednisone. We hold our breaths and wait. We wait a month minimum for a sign.
Dinner out
Tom called. He needs his phone charger. Do I want to drive up to the hospital, bring the charger and go out to dinner? I should say sneak out to dinner. Tom wants to go to the Chart House. It is just down the road from the hospital, and the only close restaurant. It also serves wine.
I bring Trevor so he can entertain Riley while we are away. We aren't really supposed to leave the hospital grounds with Trevor in the room, but the boys have our number and sometimes Mommy and Daddy just need their time together.
Riley walks down to the hall pulling his coat rack, to the movie closet, to get the extended version of Lord of the Rings. He swings by the nurses station to return the cabinet key. I know once the movie is in they wont have a problem and we can skip out. I can tell Riley is enjoying all this TV freedom. When Trevor and I approached the room I could hear Riley's laughter. He was watching Austin Powers. He wont have all these cool movies at home.
On the table is a PB and J sandwich in a bag. The crusts have been cut off. I ask if Grandma made it. Riley says yes, picks it up and starts chomping on it. Grandma knows just how to make Riley's sandwich, not like the hospital food. I am grateful to Grandma, even though I chuckle over her cutting off the crusts. The hospital has few meals Riley has liked. I stick to ordering him oatmeal with maple syrup and brown sugar, or french toast. He has gotten tired of cheese burgers. Grandma is a fantastic cook and has always known how to get the picky eater to eat.
I feel bad about Riley being so difficult for her the other day.
Tom and I have both had our oopses this week, when I tried to stay home Sunday night to sleep and Riley called at midnight vomiting on the phone, and Tom trying to sneak away before the meds had been taken the other morning. That must have been very trying for my mom having to witness Riley's melt down. She has a hard time being tough with the grand children. They know how to walk all over her. Nice thing about being a grandma is you get to give the brats back to their parents.
I do need to get the dog back. Grandma still has Bucky. I fear she will try and make a swap, and give us her dog instead. No, her dog would never let that happen.
A month ago, it was my birthday. Mom and Dad took me to The Chart House for dinner. This place is old old Portland. Mom had received a gift certificate to the place a while back and never used it. I was thrilled she wanted to spend it on me and my birthday. The Chart House has been around for years. My Grandmother would take us there when we were little. Its of the era of Henry Thieli's, and Yaw's Burgers on the East side. These places were restaurants that my parents went to as children.
We had a lovely birthday lunch. The menus had been customized. At the top they say Happy Birthday Stephanie. I felt incredibly special. Mom and Dad say its not like it used to be, but I am loving it. The Chart House has the look and smell of old money. Valet at the door and glittering views out the window. The other restaurant near the hospital was The Carnival. It has been bulldozed, and is just a big gravel strip now, just down from the hospital. I was truly sad to see it gone. I loved those gigantic milk shakes and choices of desserts, and the smell of cooking hamburgers. We could go there more often since it was just a burger joint kind of place, not too expensive.
All that is left near the hospital is The Chart House, with its expensive menu and incredible vista views. So Tom and I steal away for a moment of "us" time. We don't have reservations, but we get a window table anyway. The place is moderately crowded. Its after 7:30 pm. Tom takes a seat facing the door, which I find funny with the view to his side. He always likes to see who is coming in, no surprises. I do that when he is not with me now.
We order glasses of wine and enjoy the sparkling lights of the city. The Willamette river is invisible in the dark, but we know its there by the lack of lights. We toast. We talk about Riley.
Tom Tells me that he had the doctor look him right in the eye when the doctor told him that there is a good candidate for bone marrow on the list. We are lucky. If this treatment doesn't work we have a good donor. This is what I told my sister also. The problem is, though bone marrow is a cure with a 90% success rate, it has a 70% survival rate after surgery. "What
doesn't kill you, cures you". We would know within 3 months if Riley accepts or rejects the bone marrow. He either lives or dies. This is why we hesitate to do it. That is a C grade. Being young gives Riley a little better chance, maybe a B.
For me a B or C is not good enough. We hope this treatment works. He could relapse later under this regime, but later is a long way off. Modern medicine changes and discoveries are made. 5 years from now or 10 , there may be a medicine that cures Aplastic Anemia, if we can buy ourselves the time. Its the whole blood transfusion that causes the glitches. The longer he needs transfusions the worse his statistical survival rate is. His body will reject more easily. Do we do it now or run a greater risk waiting? It's all about time.
So, we are excited Riley gets to come home, Sunday. We are less stressed about each day. The routine is setting in. The deer in the headlights is gone. Riley poked his dad and the nurse with a saline needle. Tonight he pokes himself, then he gets to poke me as a reward. I am on duty tonight for sleep over, so I can get that bed time shot.
A friend, who is also a pharmacist, sent me a note recommending we let our regular pharmacy know what meds Riley will be on. Some of this exotic stuff is not kept in stock. So the pharmacy may need a heads up. Its all about who you know, what you know, and sharing that information. That was a huge tip.
Tom sent me another bed time text last night, from the hospital. Something about missed opportunity in the parking lot. I told him to hold the thought. Our life took a little detour, but with any luck we'll find our way back on the scenic route. I am looking forward to Sunday.
I bring Trevor so he can entertain Riley while we are away. We aren't really supposed to leave the hospital grounds with Trevor in the room, but the boys have our number and sometimes Mommy and Daddy just need their time together.
Riley walks down to the hall pulling his coat rack, to the movie closet, to get the extended version of Lord of the Rings. He swings by the nurses station to return the cabinet key. I know once the movie is in they wont have a problem and we can skip out. I can tell Riley is enjoying all this TV freedom. When Trevor and I approached the room I could hear Riley's laughter. He was watching Austin Powers. He wont have all these cool movies at home.
On the table is a PB and J sandwich in a bag. The crusts have been cut off. I ask if Grandma made it. Riley says yes, picks it up and starts chomping on it. Grandma knows just how to make Riley's sandwich, not like the hospital food. I am grateful to Grandma, even though I chuckle over her cutting off the crusts. The hospital has few meals Riley has liked. I stick to ordering him oatmeal with maple syrup and brown sugar, or french toast. He has gotten tired of cheese burgers. Grandma is a fantastic cook and has always known how to get the picky eater to eat.
I feel bad about Riley being so difficult for her the other day.
Tom and I have both had our oopses this week, when I tried to stay home Sunday night to sleep and Riley called at midnight vomiting on the phone, and Tom trying to sneak away before the meds had been taken the other morning. That must have been very trying for my mom having to witness Riley's melt down. She has a hard time being tough with the grand children. They know how to walk all over her. Nice thing about being a grandma is you get to give the brats back to their parents.
I do need to get the dog back. Grandma still has Bucky. I fear she will try and make a swap, and give us her dog instead. No, her dog would never let that happen.
A month ago, it was my birthday. Mom and Dad took me to The Chart House for dinner. This place is old old Portland. Mom had received a gift certificate to the place a while back and never used it. I was thrilled she wanted to spend it on me and my birthday. The Chart House has been around for years. My Grandmother would take us there when we were little. Its of the era of Henry Thieli's, and Yaw's Burgers on the East side. These places were restaurants that my parents went to as children.
We had a lovely birthday lunch. The menus had been customized. At the top they say Happy Birthday Stephanie. I felt incredibly special. Mom and Dad say its not like it used to be, but I am loving it. The Chart House has the look and smell of old money. Valet at the door and glittering views out the window. The other restaurant near the hospital was The Carnival. It has been bulldozed, and is just a big gravel strip now, just down from the hospital. I was truly sad to see it gone. I loved those gigantic milk shakes and choices of desserts, and the smell of cooking hamburgers. We could go there more often since it was just a burger joint kind of place, not too expensive.
All that is left near the hospital is The Chart House, with its expensive menu and incredible vista views. So Tom and I steal away for a moment of "us" time. We don't have reservations, but we get a window table anyway. The place is moderately crowded. Its after 7:30 pm. Tom takes a seat facing the door, which I find funny with the view to his side. He always likes to see who is coming in, no surprises. I do that when he is not with me now.
We order glasses of wine and enjoy the sparkling lights of the city. The Willamette river is invisible in the dark, but we know its there by the lack of lights. We toast. We talk about Riley.
Tom Tells me that he had the doctor look him right in the eye when the doctor told him that there is a good candidate for bone marrow on the list. We are lucky. If this treatment doesn't work we have a good donor. This is what I told my sister also. The problem is, though bone marrow is a cure with a 90% success rate, it has a 70% survival rate after surgery. "What
doesn't kill you, cures you". We would know within 3 months if Riley accepts or rejects the bone marrow. He either lives or dies. This is why we hesitate to do it. That is a C grade. Being young gives Riley a little better chance, maybe a B.
For me a B or C is not good enough. We hope this treatment works. He could relapse later under this regime, but later is a long way off. Modern medicine changes and discoveries are made. 5 years from now or 10 , there may be a medicine that cures Aplastic Anemia, if we can buy ourselves the time. Its the whole blood transfusion that causes the glitches. The longer he needs transfusions the worse his statistical survival rate is. His body will reject more easily. Do we do it now or run a greater risk waiting? It's all about time.
So, we are excited Riley gets to come home, Sunday. We are less stressed about each day. The routine is setting in. The deer in the headlights is gone. Riley poked his dad and the nurse with a saline needle. Tonight he pokes himself, then he gets to poke me as a reward. I am on duty tonight for sleep over, so I can get that bed time shot.
A friend, who is also a pharmacist, sent me a note recommending we let our regular pharmacy know what meds Riley will be on. Some of this exotic stuff is not kept in stock. So the pharmacy may need a heads up. Its all about who you know, what you know, and sharing that information. That was a huge tip.
Tom sent me another bed time text last night, from the hospital. Something about missed opportunity in the parking lot. I told him to hold the thought. Our life took a little detour, but with any luck we'll find our way back on the scenic route. I am looking forward to Sunday.
Thursday, February 25, 2010
Day after
I am not sure I even remember the 3:00am blood draw. I was so tired after yesterday's marathon. My lower back hurt going to bed. I can't imagine how my friends feel. I like projects and the aches that go with them. They worked with me because they wanted to help me in this difficult time. But I know not everyone likes to fling boards and paint brushes. I personally find it therapeutic and satisfying.
Tom told me the Hematologist doctor stopped by again, stressing that he might have given us the wrong impression about how sterile the house needed to be, when he heard I was going to gut Riley's room. He hasn't seen my house on a normal day, as my friends will attest (prior to all this cleaning help recently). Tom told him I have been wanting to tackle this project for a while and not to worry. I think Tom also felt it needed to be done or he would not have given me the time and opportunity to get it done.
When the Hematology doctor came on rounds, he asked how the remodel went. I told him it was all done. It is except for a few details. He told me he wanted to hire me for his home. I told him I was a tough task master. Dornbechers really has personable staff. Tom even knows which one I think of as the cute doctor. He said that doctor reminds him of Dr. Carter in ER.
Last night my sister showed me a web sight of some friends. They looked so old, with grey hair and age. The problem was they were close to our age. Middle age used to be so far away, now we are there. I swear I still feel 23, well, maybe 33. 23 was a good year, so was 33. 23 we were out of college with good jobs and money to burn and cheap rent. 33 I had my babies and got to play all day.
Riley loved the vanilla yogurt I order for him to take with his pills. They go down without a hitch, just a little ribbing from the nurse. The doctors come round and tell us he needs to gain weight. The nutritionist brings in the fixings for PB and J so Riley can make his own the way he likes it.
Tom arrives at the hospital. He is shaven, smells great and looks spiffy in a clean pressed dress shirt. He is refreshed, even though Trevor missed the bus this morning at 7:00 am and Tom yelled at him that he should ride his bike. Tom drove Trevor to school. He then went back to bed for a while.
The school calls. Trevor has had an accident in PE. Someone, while they were playing with the floor scooters, hit Trevor in the knee, hard, right in his old knee injury from football. He is in pain and in the nurses station. They wont give him any Tylenol for the pain, rules. Tom and I look at each other and agree I'll go check it out.
It will give me the opportunity I need to finish cleaning up after yesterday, that old silver lining. I get to the school and after several conversations, get Trevor in a wheel chair. We clean his locker and head home. I will check with Tom to see which of us is spending the night at the hospital tonight.
He is planning on going back to work next week, for at least a few days. This is such a long term illness, we are beginning to be less freaked out, and just take things as they come. I am becoming more organized and calmer in some ways. My rantings at Trevor are shorter and we make up faster these days. He is trying much harder at school, either that or the school, because of what is going on at home is being incredibly accommodating, generous, and helpful, and supportive of Trevor, and Riley for that matter.
Riley delayed red cells again today. The hospital is planning to discharge him on Sunday morning. Hospital time, it will more likely be about 2:00 pm. But the Doctor said that they will give him red cells or whole blood either tomorrow or Saturday to boost him up before discharging him. Then Tuesday he has blood drawn just to check the numbers and Thursday we go back to an all day at Dornbechers in the out patient clinic for a battery of tests and see if there are any indications of anything conclusive. We are not to anticipate anything at all for a month at least. We are told it will probably be 3 months before there is any indication of anything.
The indication will be if platelets hold on their own without transfusion for a definitive amount of time.
I have not canceled our summer trip yet. Washington DC/ New York with Aunt J. I can hope to myself for a little while longer that we will still be going. I told a friend we could get a gas mask for Riley so he can fly and hang out in a crowd. I said we would probably get followed around by secret service in DC wondering why Riley is wearing a gas mask on the Mall.
Trevor meanwhile has crawled into my bed to read. I sure hope he can go to school tomorrow.
I wonder who is getting to spend the night at the hospital tonight. Today I am glad I only have two.
Tom told me the Hematologist doctor stopped by again, stressing that he might have given us the wrong impression about how sterile the house needed to be, when he heard I was going to gut Riley's room. He hasn't seen my house on a normal day, as my friends will attest (prior to all this cleaning help recently). Tom told him I have been wanting to tackle this project for a while and not to worry. I think Tom also felt it needed to be done or he would not have given me the time and opportunity to get it done.
When the Hematology doctor came on rounds, he asked how the remodel went. I told him it was all done. It is except for a few details. He told me he wanted to hire me for his home. I told him I was a tough task master. Dornbechers really has personable staff. Tom even knows which one I think of as the cute doctor. He said that doctor reminds him of Dr. Carter in ER.
Last night my sister showed me a web sight of some friends. They looked so old, with grey hair and age. The problem was they were close to our age. Middle age used to be so far away, now we are there. I swear I still feel 23, well, maybe 33. 23 was a good year, so was 33. 23 we were out of college with good jobs and money to burn and cheap rent. 33 I had my babies and got to play all day.
Riley loved the vanilla yogurt I order for him to take with his pills. They go down without a hitch, just a little ribbing from the nurse. The doctors come round and tell us he needs to gain weight. The nutritionist brings in the fixings for PB and J so Riley can make his own the way he likes it.
Tom arrives at the hospital. He is shaven, smells great and looks spiffy in a clean pressed dress shirt. He is refreshed, even though Trevor missed the bus this morning at 7:00 am and Tom yelled at him that he should ride his bike. Tom drove Trevor to school. He then went back to bed for a while.
The school calls. Trevor has had an accident in PE. Someone, while they were playing with the floor scooters, hit Trevor in the knee, hard, right in his old knee injury from football. He is in pain and in the nurses station. They wont give him any Tylenol for the pain, rules. Tom and I look at each other and agree I'll go check it out.
It will give me the opportunity I need to finish cleaning up after yesterday, that old silver lining. I get to the school and after several conversations, get Trevor in a wheel chair. We clean his locker and head home. I will check with Tom to see which of us is spending the night at the hospital tonight.
He is planning on going back to work next week, for at least a few days. This is such a long term illness, we are beginning to be less freaked out, and just take things as they come. I am becoming more organized and calmer in some ways. My rantings at Trevor are shorter and we make up faster these days. He is trying much harder at school, either that or the school, because of what is going on at home is being incredibly accommodating, generous, and helpful, and supportive of Trevor, and Riley for that matter.
Riley delayed red cells again today. The hospital is planning to discharge him on Sunday morning. Hospital time, it will more likely be about 2:00 pm. But the Doctor said that they will give him red cells or whole blood either tomorrow or Saturday to boost him up before discharging him. Then Tuesday he has blood drawn just to check the numbers and Thursday we go back to an all day at Dornbechers in the out patient clinic for a battery of tests and see if there are any indications of anything conclusive. We are not to anticipate anything at all for a month at least. We are told it will probably be 3 months before there is any indication of anything.
The indication will be if platelets hold on their own without transfusion for a definitive amount of time.
I have not canceled our summer trip yet. Washington DC/ New York with Aunt J. I can hope to myself for a little while longer that we will still be going. I told a friend we could get a gas mask for Riley so he can fly and hang out in a crowd. I said we would probably get followed around by secret service in DC wondering why Riley is wearing a gas mask on the Mall.
Trevor meanwhile has crawled into my bed to read. I sure hope he can go to school tomorrow.
I wonder who is getting to spend the night at the hospital tonight. Today I am glad I only have two.
The Project
I was on a mission. I had one day to get Riley's room done. Tom needed a break from the hospital. The pressure was on. Elmer and his crew arrived at 8:15 am. I am so grateful to them and to my mom for hiring them. I had the room cleared of all the books and nicknacks, thanks to a dear friend yesterday, packing it up. The furniture was quickly moved into Trevor's room, so I could use the game room later for other things.
Riley had a twin bed, a dresser, a bedside table, and a two book shelves. The room was gutted of carpet and furniture, the tack strips pulled, and the room painted. The crew was done by 11:30 am, with two coats of paint ceiling and walls.
Friends started to arrive to help. I even had time for a quick cup of tea with the first one to arrive. She brought a meal with her for us to freeze and eat later this weekend. One vacuumed, and tackled the bathrooms cleaning. The crew used up all of the two gallons of paint I had bought.
I was looking at the boys bathroom, that they had shared with Grandpa Tom for a year. The walls were really grungy and were the same flat primer paint as Riley's room had been before painting. I scrounged all the little sample quarts from the garage I had from picking house colors last summer, and brought them into the kitchen. My neighbor ran to her house and brought over a clean and empty 5 gallon bucket and paints from her garage. There were four of us studying the cans seeing what combinations we could come up with to make enough to do the bathroom.
My house exterior has shades of grey, but originally we were looking at blue. These were just sample quarts of color and I had 10 of them. Many were only half full because I put big samples on the walls. We tossed them into the bucket one at a time. A little lighter, a little bluer, it turned from grey to brown then back to a rich dark grey. I loved it. My girlfriends were nervous, too dark, too grey. I said "trust me it will be lovely." Two of them went to work on the bathroom.
Unlike me, who never bothers to tape before painting, they did a meticulous job. The bathroom was stunning, in a rich dark slate or steel grey, that looked great with the grab bars we had installed for Grandpa . The girls asked if they should remove those industrial strength bars I had installed. I told them to leave them just in case Riley needs them later.
During all this action, another friend arrives with a spaghetti lunch and salad and brownies for everyone. The crew is cleaning up, so her timing is impeccable. Every one takes a break and eats. Of course, I am calling downstairs wondering where everyone went, and wondering why they take so long to eat, as I stress the waisted time. I do that to my boys also, I am such a slave driver with my projects. No eating or drinking until the project is finished. The volunteers enjoy their meal.
We are rocking and rolling. The crew leaves after lunch and we get on to the floors. I had debated sealing the subfloor, but with the vapor barrier pad, and the time it would have taken to dry we opt not to seal the floor. The crew has pulled all the tack strips and staples and nails. I run a putty knife along the floor just to check. They only missed a few. Its fantastic, we can start laying the floor and it is only noon. Some one vacuums, while I get the pad. It rolls out and we have plenty.
The first few rows are always a little more tricky, because they slide. But I found with this many helpers, we just got it done, easily. Sitting on the floor, we each could snap in a board at the same time in the row. The mom that brought lunch was comfortable with the saw, so she was running downstairs to the garage, making the end cuts at each row turn. Someone else would hand us the boards.
We were three quarters done, when lunch mom got a call that her horse was loose and limping so she had to leave. The bathroom moms were done and it was getting to the end of the school day around 2:30 pm. My friend from Longview needed to avoid the rush hour traffic, at least I hope she did. That left my neighbor and her brother in law (who had painted my house last summer). We got all the way into the closet and to the thin last pieces against the wall. We were tired and the last boards are always cut pieces. It seemed like forever. We couldn't get the pieces in. We did the whole room in 3 hours and spent the 4th hour on the last 2 boards. We decided to leave it until tomorrow when we were fresh and rested.
Everyone was gone. I finally went downstairs for a quiet bite of that delightful lunch spread. Just that little break gave me the energy, and fresh perspective to cut the last boards. All that is left now is a little fill piece at the closet door and hanging the clothing racks back up.
I could not have accomplished this task without all that help. I am so grateful to my mom for providing the demo crew and painters for the morning. I wore everyone out just doing the parts we did do, painting the bathroom, cleaning, and getting that floor down all in one day. Whoosh.
I was incredibly stinky after all that work so I grabbed a quick shower, threw on a dress and grabbed Trevor and headed out to the hospital where Tom was dieing for a break after 3 days and two full nights. He had tried to escape to my moms house, but Riley had had a little melt down over taking his pills. In the middle of the morning, my mom had called and said Riley was in distress. He wouldn't take his pills. He wanted me to come. Well, there I was with 9 people in my house ripping out his room. I called Tom and told him he would just have to go back to the hospital. So I knew I had to get everything done and get to the hospital ASAP.
Trevor called in the morning just after the painters started. He had left his reading book at home. I am trying really hard to give him good quality time and not get mad at those silly things Trevor is prone to do. I run the book to the school. In my car returning, he calls, "Thanks mom, and I think I forgot my math at home." Thank goodness I had gone through his binder last night. "No, its in there. Look again." I can but laugh at that boy sometimes.
Did I mention after school, Trevor has his after school bible study going in the dining room, with two friends. I am try to keep all routines. What a day. My sister and her daughter were at the hospital when I got there. They had brought Baskins and Robins ice cream. The hospital also had a dinner spread in the play room offered by Bon Appetite Restaurant. They volunteer a dinner once a month to the whole ward and visitors. The children watch Indiana Jones. My niece slaps Riley on the arm for something he says, and he yells "You can't hit me". She is mortified, for a moment she had forgotten Riley is so sick. He seems so normal at times, even with the tubes hanging off his arm. Everyone has to leave shortly. They all have school and work tomorrow.
I get ready for bed, then tell Riley to scoot over and share a spot in his bed. We are both wrapped in our special shawls. I ask him about this morning and what happened that caused him to have a melt down. Grandma had opened one of his pills and sprinkled the white powder over the apple sauce. He couldn't eat it. It wasn't the way he does it. He is so much like his grandfather, my dad, my mothers ex-husband. There is a reason why they are not married. My Dad could be so difficult. Things had to be just so.
Riley takes the spoon and dips it in the apple sauce then he buries the pill in the tip of the spoon. He takes the bite and the pill slides down his throat quietly. He couldn't take the big horse pill sizes, so they give him five little cyclosporine. He also takes Tylenol and Benedryl, but the nurses have learned that he can do those in liquid form, without complaint. The predizone is also added to the mix, but sometimes they give that in his IV. When he gets home it will be in pill form. We talk through, Riley's options and how important it is for him to take his pills. I explain how everyone takes pills. Trevor and I take big fat vitamins and fish oil pills. I talk about all the people we know and the pills they take, especially the relatives that need special medicines for their health. We talk for a while. Riley is tired of apple sauce, he doesn't like the chocolate pudding alternative. I suggest maybe yogurt or peanut butter and tell him to think about what he could order at breakfast that he would like to put his pills in.
I am almost tempted to stay squeezed into that nice comfortable twin bed. The mattress is really soft. It is just a little tight for the two of us. I give up my spot. Riley falls asleep shortly. I was happy to hit the day bed in the hospital window. Tom sends me a text message telling me he loves the king size feather bed at home. It's really soft and comfortable. Then he calls and tells me about the day.
The doctors were able to postpone the red blood another day. Even though Riley's number are falling, they are falling slowly enough. It is best to put off the red cells as long as possible. Tom and I are in agreement. He wants me to call him in the morning with Riley's blood counts. We both are so tired. We wish each other a good night's rest.
Riley had a twin bed, a dresser, a bedside table, and a two book shelves. The room was gutted of carpet and furniture, the tack strips pulled, and the room painted. The crew was done by 11:30 am, with two coats of paint ceiling and walls.
Friends started to arrive to help. I even had time for a quick cup of tea with the first one to arrive. She brought a meal with her for us to freeze and eat later this weekend. One vacuumed, and tackled the bathrooms cleaning. The crew used up all of the two gallons of paint I had bought.
I was looking at the boys bathroom, that they had shared with Grandpa Tom for a year. The walls were really grungy and were the same flat primer paint as Riley's room had been before painting. I scrounged all the little sample quarts from the garage I had from picking house colors last summer, and brought them into the kitchen. My neighbor ran to her house and brought over a clean and empty 5 gallon bucket and paints from her garage. There were four of us studying the cans seeing what combinations we could come up with to make enough to do the bathroom.
My house exterior has shades of grey, but originally we were looking at blue. These were just sample quarts of color and I had 10 of them. Many were only half full because I put big samples on the walls. We tossed them into the bucket one at a time. A little lighter, a little bluer, it turned from grey to brown then back to a rich dark grey. I loved it. My girlfriends were nervous, too dark, too grey. I said "trust me it will be lovely." Two of them went to work on the bathroom.
Unlike me, who never bothers to tape before painting, they did a meticulous job. The bathroom was stunning, in a rich dark slate or steel grey, that looked great with the grab bars we had installed for Grandpa . The girls asked if they should remove those industrial strength bars I had installed. I told them to leave them just in case Riley needs them later.
During all this action, another friend arrives with a spaghetti lunch and salad and brownies for everyone. The crew is cleaning up, so her timing is impeccable. Every one takes a break and eats. Of course, I am calling downstairs wondering where everyone went, and wondering why they take so long to eat, as I stress the waisted time. I do that to my boys also, I am such a slave driver with my projects. No eating or drinking until the project is finished. The volunteers enjoy their meal.
We are rocking and rolling. The crew leaves after lunch and we get on to the floors. I had debated sealing the subfloor, but with the vapor barrier pad, and the time it would have taken to dry we opt not to seal the floor. The crew has pulled all the tack strips and staples and nails. I run a putty knife along the floor just to check. They only missed a few. Its fantastic, we can start laying the floor and it is only noon. Some one vacuums, while I get the pad. It rolls out and we have plenty.
The first few rows are always a little more tricky, because they slide. But I found with this many helpers, we just got it done, easily. Sitting on the floor, we each could snap in a board at the same time in the row. The mom that brought lunch was comfortable with the saw, so she was running downstairs to the garage, making the end cuts at each row turn. Someone else would hand us the boards.
We were three quarters done, when lunch mom got a call that her horse was loose and limping so she had to leave. The bathroom moms were done and it was getting to the end of the school day around 2:30 pm. My friend from Longview needed to avoid the rush hour traffic, at least I hope she did. That left my neighbor and her brother in law (who had painted my house last summer). We got all the way into the closet and to the thin last pieces against the wall. We were tired and the last boards are always cut pieces. It seemed like forever. We couldn't get the pieces in. We did the whole room in 3 hours and spent the 4th hour on the last 2 boards. We decided to leave it until tomorrow when we were fresh and rested.
Everyone was gone. I finally went downstairs for a quiet bite of that delightful lunch spread. Just that little break gave me the energy, and fresh perspective to cut the last boards. All that is left now is a little fill piece at the closet door and hanging the clothing racks back up.
I could not have accomplished this task without all that help. I am so grateful to my mom for providing the demo crew and painters for the morning. I wore everyone out just doing the parts we did do, painting the bathroom, cleaning, and getting that floor down all in one day. Whoosh.
I was incredibly stinky after all that work so I grabbed a quick shower, threw on a dress and grabbed Trevor and headed out to the hospital where Tom was dieing for a break after 3 days and two full nights. He had tried to escape to my moms house, but Riley had had a little melt down over taking his pills. In the middle of the morning, my mom had called and said Riley was in distress. He wouldn't take his pills. He wanted me to come. Well, there I was with 9 people in my house ripping out his room. I called Tom and told him he would just have to go back to the hospital. So I knew I had to get everything done and get to the hospital ASAP.
Trevor called in the morning just after the painters started. He had left his reading book at home. I am trying really hard to give him good quality time and not get mad at those silly things Trevor is prone to do. I run the book to the school. In my car returning, he calls, "Thanks mom, and I think I forgot my math at home." Thank goodness I had gone through his binder last night. "No, its in there. Look again." I can but laugh at that boy sometimes.
Did I mention after school, Trevor has his after school bible study going in the dining room, with two friends. I am try to keep all routines. What a day. My sister and her daughter were at the hospital when I got there. They had brought Baskins and Robins ice cream. The hospital also had a dinner spread in the play room offered by Bon Appetite Restaurant. They volunteer a dinner once a month to the whole ward and visitors. The children watch Indiana Jones. My niece slaps Riley on the arm for something he says, and he yells "You can't hit me". She is mortified, for a moment she had forgotten Riley is so sick. He seems so normal at times, even with the tubes hanging off his arm. Everyone has to leave shortly. They all have school and work tomorrow.
I get ready for bed, then tell Riley to scoot over and share a spot in his bed. We are both wrapped in our special shawls. I ask him about this morning and what happened that caused him to have a melt down. Grandma had opened one of his pills and sprinkled the white powder over the apple sauce. He couldn't eat it. It wasn't the way he does it. He is so much like his grandfather, my dad, my mothers ex-husband. There is a reason why they are not married. My Dad could be so difficult. Things had to be just so.
Riley takes the spoon and dips it in the apple sauce then he buries the pill in the tip of the spoon. He takes the bite and the pill slides down his throat quietly. He couldn't take the big horse pill sizes, so they give him five little cyclosporine. He also takes Tylenol and Benedryl, but the nurses have learned that he can do those in liquid form, without complaint. The predizone is also added to the mix, but sometimes they give that in his IV. When he gets home it will be in pill form. We talk through, Riley's options and how important it is for him to take his pills. I explain how everyone takes pills. Trevor and I take big fat vitamins and fish oil pills. I talk about all the people we know and the pills they take, especially the relatives that need special medicines for their health. We talk for a while. Riley is tired of apple sauce, he doesn't like the chocolate pudding alternative. I suggest maybe yogurt or peanut butter and tell him to think about what he could order at breakfast that he would like to put his pills in.
I am almost tempted to stay squeezed into that nice comfortable twin bed. The mattress is really soft. It is just a little tight for the two of us. I give up my spot. Riley falls asleep shortly. I was happy to hit the day bed in the hospital window. Tom sends me a text message telling me he loves the king size feather bed at home. It's really soft and comfortable. Then he calls and tells me about the day.
The doctors were able to postpone the red blood another day. Even though Riley's number are falling, they are falling slowly enough. It is best to put off the red cells as long as possible. Tom and I are in agreement. He wants me to call him in the morning with Riley's blood counts. We both are so tired. We wish each other a good night's rest.
Wednesday, February 24, 2010
Whole Blood
Tom told me last night, Riley will probably receive whole blood today. Yesterday he received another transfusion of platelets. His red cell numbers are approaching the point where they give whole blood. I pray each time that its a magic transfusion, that someone out there has blood so special, Riley's blood perks up and starts working again magically on its own. We all wish for that magic shot, that cure all. I have faith in modern medicine, even if the doctor said how he is treating Riley will be considered primitive in 10 years time. There are no other choices.
When you read up on the Internet sights, they all talk about the same thing, the same treatments, the same studies. There are so few people that get this disease, there is not a large pool of subjects to work with. Then you have to take out adult studies, because they have an even worse chance of beating this than children do.
I will be interested today on what Riley's numbers are from his 3:00 am blood draw. They gave him platelets when the number was 7 yesterday. I was hoping they would wait a little longer to spread them out, but I think this ATG is powerful. They probably can't risk 3 or 5 while he is on the medication. The magic number is 7.6 for red cells. Yesterday his oxygen level was still good. He had energy. As those red cells fall further he will get headaches and be tired and listless.
When I stopped by the hospital last night I could tell Tom was in charge. The room looked like boys lived in it. I cleaned up the litter and empty pop cans. There are garbage cans everywhere, but can my boys find them? I laughed, it was good that they were comfortable. I brought Riley get well cards from school from the other students. We hung them on the walls to give the room some color and interest.
I also have a new prayer shawl. I found a prettily wrapped bag on my door step the other day. Riley had wanted a prayer shawl also and had confiscated the first one we were given. This second one I like even better. It is a beautiful olive green with flex of other colors in the yarn. I tell Riley he can keep the one he has become attached to, its lavender. I like this new one. I wear it everywhere. It goes with my wardrobe. I feel better with it softly draped on my shoulders. I will probably start sleeping with it like Riley does his.
I woke up this morning. Unlike yesterday I am unable to go back to sleep. I feel like I had coffee. I reach over and put my hand on Tom's side of the bed. I think in a few days he'll be back in his own bed also. I miss him being here. We will be a family again soon. Riley will be home. I wonder now if Riley will want to sleep with us again. I don't know if we can let him. Our room is not sanitized. We have a feather bed. Well, I had better get ready for the crew. Today, we prepare for Riley's return on Sunday.
When you read up on the Internet sights, they all talk about the same thing, the same treatments, the same studies. There are so few people that get this disease, there is not a large pool of subjects to work with. Then you have to take out adult studies, because they have an even worse chance of beating this than children do.
I will be interested today on what Riley's numbers are from his 3:00 am blood draw. They gave him platelets when the number was 7 yesterday. I was hoping they would wait a little longer to spread them out, but I think this ATG is powerful. They probably can't risk 3 or 5 while he is on the medication. The magic number is 7.6 for red cells. Yesterday his oxygen level was still good. He had energy. As those red cells fall further he will get headaches and be tired and listless.
When I stopped by the hospital last night I could tell Tom was in charge. The room looked like boys lived in it. I cleaned up the litter and empty pop cans. There are garbage cans everywhere, but can my boys find them? I laughed, it was good that they were comfortable. I brought Riley get well cards from school from the other students. We hung them on the walls to give the room some color and interest.
I also have a new prayer shawl. I found a prettily wrapped bag on my door step the other day. Riley had wanted a prayer shawl also and had confiscated the first one we were given. This second one I like even better. It is a beautiful olive green with flex of other colors in the yarn. I tell Riley he can keep the one he has become attached to, its lavender. I like this new one. I wear it everywhere. It goes with my wardrobe. I feel better with it softly draped on my shoulders. I will probably start sleeping with it like Riley does his.
I woke up this morning. Unlike yesterday I am unable to go back to sleep. I feel like I had coffee. I reach over and put my hand on Tom's side of the bed. I think in a few days he'll be back in his own bed also. I miss him being here. We will be a family again soon. Riley will be home. I wonder now if Riley will want to sleep with us again. I don't know if we can let him. Our room is not sanitized. We have a feather bed. Well, I had better get ready for the crew. Today, we prepare for Riley's return on Sunday.
Tuesday, February 23, 2010
Don't Read the Statistics
Tom always said if he ever got something serious he would become more educated on the subject than the doctor treating him. He is living up to those words. Immersed deep in the Advanced Google searches, he is finding what he considers wonderful informative web sights about bone marrow transplants and Aplastic Anemia. He tells me he has signed up for news letters on the subject. He tells me these are great web sights full of useful information. Then he tells me don't read the statistics.
I gave up reading about it at all in week two. He can fill me in as needed. I will use the practical now approach. If it pertains to what we are doing this day I will pay attention, otherwise I have to let it go. Too much information is not overload, it is debilitating. It catches me off guard when I am driving. I am thankful I am alone. I give Tom a hug goodbye at the hospital and it becomes a life grip. I shudder and pull myself together to drive home.
Trevor is waiting. He has walked home in the rain from after school study hall. I have him bring out his binder. He shows me many graded pages of math. I take him out to dinner to celebrate. Trevor handing in assignments, and getting them back graded, is a huge accomplishment for that boy. He is truly stepping up, or perhaps its his teachers know we could use some personal direction right now. All I know is he got his work in and graded, its time to celebrate. I tell him if he gets A's I will take him out to dinner for each one. He tells me he sees this as his opportunity to finally compete with his brother with grades. Riley has not been to school in three weeks. Trevor tells me Riley's name has probably been removed from class rosters and roll calls.
Riley will not be back to school this year. I pray he will be able to start high school, but I hear the words from the program directors hinting that they have dealt with similar cases before and they anticipate his not being in school for a very long time. Well, I was frightened by public high school anyway.
I gave up reading about it at all in week two. He can fill me in as needed. I will use the practical now approach. If it pertains to what we are doing this day I will pay attention, otherwise I have to let it go. Too much information is not overload, it is debilitating. It catches me off guard when I am driving. I am thankful I am alone. I give Tom a hug goodbye at the hospital and it becomes a life grip. I shudder and pull myself together to drive home.
Trevor is waiting. He has walked home in the rain from after school study hall. I have him bring out his binder. He shows me many graded pages of math. I take him out to dinner to celebrate. Trevor handing in assignments, and getting them back graded, is a huge accomplishment for that boy. He is truly stepping up, or perhaps its his teachers know we could use some personal direction right now. All I know is he got his work in and graded, its time to celebrate. I tell him if he gets A's I will take him out to dinner for each one. He tells me he sees this as his opportunity to finally compete with his brother with grades. Riley has not been to school in three weeks. Trevor tells me Riley's name has probably been removed from class rosters and roll calls.
Riley will not be back to school this year. I pray he will be able to start high school, but I hear the words from the program directors hinting that they have dealt with similar cases before and they anticipate his not being in school for a very long time. Well, I was frightened by public high school anyway.
Preparing
Today, A friend came over and just went to work on Riley's room, boxing up the trophies and the toys on the shelves and counters. She got the posters carefully down from the walls and the room ready for tomorrow's crew. She was a whirlwind. I am so glad she came, I think if I had done it alone I would not have been able to complete it. I would have gotten distracted by the baby box with all his early childhood treasures, or I would have started reading the labels on his trophies of the sports he will never play again. She just swept them into boxes, and away they went into the other room. We can go through them at our leasure after Riley's room is done tomorrow.
She said she would have sorted but we didn't have that luxury of time. She was right. I enjoyed her company hugely. She could be impersonal with the items the way I could not. I did clear out the closet of Riley's clothes, hanging them in the laundry room temporarily. Then I did laundry, while she packed the room. We were able to talk about our children and parenting techniques as if everything were normal, when boys should be allowed to date, the new sex ed class at school for eighth graders.
The room is now ready for the movers and painters tomorrow. I am hopeful to have the project done by mid evening. I hope so, because Tom asked if I was going to spend Wednesday night at the hospital. Three nights in a row is a lot, as I can attest from last weekend. My mom will sit with Riley tomorrow so Tom can go hide at her house and get a good rest, while we work on Riley's room. It is definitely a juggling act to get everything covered and be ready for Riley's return.
I spent the rest of the day running errands. I found I needed the pad that goes under the laminate, so swung by the builders store. I asked for brad nails, but didn't know what size so I will have to deal with that tomorrow some time. They told me to just bring in the gun.
My air compressor is at the neighbors. I'll get it tomorrow.
I got a call from the school liaison, so swung by the district office to facilitate getting the tutor for next week going. We get 5 hours a week and will have to figure out the schedule to be flexible for the days we have to go to the clinic at Dornbechers.
I also hit the bank with some checks that had been waiting for deposit. Including a refund from Grandpa Tom's assisted living, that needed to be deposited so we could pay the over expenses to the funeral home.
I also stopped by the mattress store and ordered the mattress and box spring for Riley to be delivered Friday, after his room is finished. Riley said soft, so did the woman in the store. She said if he was spending a lot of time in bed, he would want it soft. It will be the best set we have in the house. Most of our mattresses are hand me downs, and all are at least 10 years old minimum. Riley's will come sealed in plastic. We will just leave the plastic on for now.
The hospital beds and the day bed are vinyl so they can be wiped clean after each use. Riley gets his sheets changed every day. His room is wiped clean twice a day. It will be a difficult level to continue at home, but if I just focus on Riley's room and bathroom each day, I think I can manage. The rest of the house can be a little less attention to detail. At least I hope so. I think the hospital breaks it to you gently a little at a time.
I head to the hospital. The nurse was prepping Riley today to give himself his own shots once he comes home. Twice a day in the leg, he is to inject himself, just like a diabetic. I think it is his blood booster. He is right on the cusp of doing it himself or having his parents do it for him. Tom cringes at the thought.
I have a dear friend who's daughter is diabetic. I remember watching her hug her daughter as she injected the insulin. She hated doing it, sticking her daughter with a needle, causing pain. But it was life or death. It will be the same for Riley. Hopefully he will figure it out and become used to it, so I don't have to do it.
When I was in high school I took care of an elderly neighbor who was diabetic. She got to the point of being so frail she could not inject herself. The health care nurse had me practice on an orange with a needle to get the feel of the needle entering the skin and the correct angle. I suggested to the nurse with Riley, perhaps tomorrow Riley could practice on an orange to get used to the feel, before he tries injecting himself.
Tom is looking forward to a good nights rest and a good shower tomorrow. He looks a little unshaven this evening. Some old friends drop by who are in the neighborhood because they have their own appointment to see their doctor. Riley comments that his parents get more visitors than he does. But you can tell he is pleased with all the attention. He plays with the bed, elevating it as high as it will go showing off all the electronics in the room. Tom makes us all laugh over his adventures recently in Vegas and at home (It is his story to tell so I wont, but ask him about it because it is hysterical). Our friends ask if we can join them for dinner but we say our regrets. Right now is our Riley time. Adult time will come later.
She said she would have sorted but we didn't have that luxury of time. She was right. I enjoyed her company hugely. She could be impersonal with the items the way I could not. I did clear out the closet of Riley's clothes, hanging them in the laundry room temporarily. Then I did laundry, while she packed the room. We were able to talk about our children and parenting techniques as if everything were normal, when boys should be allowed to date, the new sex ed class at school for eighth graders.
The room is now ready for the movers and painters tomorrow. I am hopeful to have the project done by mid evening. I hope so, because Tom asked if I was going to spend Wednesday night at the hospital. Three nights in a row is a lot, as I can attest from last weekend. My mom will sit with Riley tomorrow so Tom can go hide at her house and get a good rest, while we work on Riley's room. It is definitely a juggling act to get everything covered and be ready for Riley's return.
I spent the rest of the day running errands. I found I needed the pad that goes under the laminate, so swung by the builders store. I asked for brad nails, but didn't know what size so I will have to deal with that tomorrow some time. They told me to just bring in the gun.
My air compressor is at the neighbors. I'll get it tomorrow.
I got a call from the school liaison, so swung by the district office to facilitate getting the tutor for next week going. We get 5 hours a week and will have to figure out the schedule to be flexible for the days we have to go to the clinic at Dornbechers.
I also hit the bank with some checks that had been waiting for deposit. Including a refund from Grandpa Tom's assisted living, that needed to be deposited so we could pay the over expenses to the funeral home.
I also stopped by the mattress store and ordered the mattress and box spring for Riley to be delivered Friday, after his room is finished. Riley said soft, so did the woman in the store. She said if he was spending a lot of time in bed, he would want it soft. It will be the best set we have in the house. Most of our mattresses are hand me downs, and all are at least 10 years old minimum. Riley's will come sealed in plastic. We will just leave the plastic on for now.
The hospital beds and the day bed are vinyl so they can be wiped clean after each use. Riley gets his sheets changed every day. His room is wiped clean twice a day. It will be a difficult level to continue at home, but if I just focus on Riley's room and bathroom each day, I think I can manage. The rest of the house can be a little less attention to detail. At least I hope so. I think the hospital breaks it to you gently a little at a time.
I head to the hospital. The nurse was prepping Riley today to give himself his own shots once he comes home. Twice a day in the leg, he is to inject himself, just like a diabetic. I think it is his blood booster. He is right on the cusp of doing it himself or having his parents do it for him. Tom cringes at the thought.
I have a dear friend who's daughter is diabetic. I remember watching her hug her daughter as she injected the insulin. She hated doing it, sticking her daughter with a needle, causing pain. But it was life or death. It will be the same for Riley. Hopefully he will figure it out and become used to it, so I don't have to do it.
When I was in high school I took care of an elderly neighbor who was diabetic. She got to the point of being so frail she could not inject herself. The health care nurse had me practice on an orange with a needle to get the feel of the needle entering the skin and the correct angle. I suggested to the nurse with Riley, perhaps tomorrow Riley could practice on an orange to get used to the feel, before he tries injecting himself.
Tom is looking forward to a good nights rest and a good shower tomorrow. He looks a little unshaven this evening. Some old friends drop by who are in the neighborhood because they have their own appointment to see their doctor. Riley comments that his parents get more visitors than he does. But you can tell he is pleased with all the attention. He plays with the bed, elevating it as high as it will go showing off all the electronics in the room. Tom makes us all laugh over his adventures recently in Vegas and at home (It is his story to tell so I wont, but ask him about it because it is hysterical). Our friends ask if we can join them for dinner but we say our regrets. Right now is our Riley time. Adult time will come later.
Home for a night
It feels so good to snuggle in with the cats in a soft and I mean soft feather mattress. The cats were all over me at first but then they went off to do what cats do in the night. The alarm went off at 6:15 for Trevor and after he was up I snuck back to bed. That extra hour is wonderful. Tom calls to ask me to bring him his gum. I tell him I'll be out in the afternoon. A friend is able to come help me organize Riley's toys and move them out of his room this morning.
I am told do not turn down any offers of help. I am so grateful to everyone. I get teary thinking about those friends that have cleaned, or dropped off meals, or said they would watch the house, make sure Trevor gets to school if he misses the bus. Just about anything to back me up so we can get through this in one piece. Those who know me well are finding it a little funny because I am a terrible cook and house keeper. What I am good at is loving my family and keeping them all happy (within reason).
Marriage is a juggling act. It takes a lot of work and compromise. But I tell my boys and my husband "You only go through life once. Do you want to be sad or do you want to be happy?"
Do those special things that come your way, because you may not have another opportunity.
One wish I have, that was a missed opportunity, is when my college room mates and I all turned 40, I was invited to go on a Mediterranean sale boat cruise of the Greek Islands. My two friends were going. It sounded lovely. One was not married, but had a boyfriend she would call at every island stop. She did eventually marry him. The other left her husband and their small son with his family in North Dakota for a fun week where the cousins and relatives could entertain them both. Both friends worked so they could afford the trip. It was only a 6 couple cruise. They were the only ones not a couple. They had such fun. It was a once in a life time experience. I did not go. I had a family and a budget. Some day I hope to find 6 couples that I know and do that trip with them, the one I missed.
We have friends we get together with, and do the family trips, Bend or the beach. They are rarer now. We did them before we all popped babies. But it has gotten harder with children and their activities for us all to get together. Washington and Oregon do not have the same spring breaks. Their children or ours are in sports. I do miss those somewhat drunken gatherings. We park our cars and no one drives. There is a hot tub for conversations until 2 in the morning. We solve all our problems and the world's.
I commented to my friend that dropped off the cookies the other day how most of my friends are still married, after 15 or 20 years. they have all survived the statistics. It makes me happy
to know. When you think about it, it means that they are trust worthy and solid human beings that still love each other and are willing to stay the course.
I dated a guy once, my college room mate did not like him, so we didn't go out again. He ended up killing someone, premeditatively, a couple years later. He is in the state pen. Thank goodness I trusted my room mate's judgement. My friends have always looked out for me. Now when I have truly needed them they are still here, waiting to help me in any way they can. I am truly blessed and spoiled. I am looking forward to many more good times of fun and frivolity with my family and my friends. We are going to have one hell of a party when we are through. It just may be a year away.
I am told do not turn down any offers of help. I am so grateful to everyone. I get teary thinking about those friends that have cleaned, or dropped off meals, or said they would watch the house, make sure Trevor gets to school if he misses the bus. Just about anything to back me up so we can get through this in one piece. Those who know me well are finding it a little funny because I am a terrible cook and house keeper. What I am good at is loving my family and keeping them all happy (within reason).
Marriage is a juggling act. It takes a lot of work and compromise. But I tell my boys and my husband "You only go through life once. Do you want to be sad or do you want to be happy?"
Do those special things that come your way, because you may not have another opportunity.
One wish I have, that was a missed opportunity, is when my college room mates and I all turned 40, I was invited to go on a Mediterranean sale boat cruise of the Greek Islands. My two friends were going. It sounded lovely. One was not married, but had a boyfriend she would call at every island stop. She did eventually marry him. The other left her husband and their small son with his family in North Dakota for a fun week where the cousins and relatives could entertain them both. Both friends worked so they could afford the trip. It was only a 6 couple cruise. They were the only ones not a couple. They had such fun. It was a once in a life time experience. I did not go. I had a family and a budget. Some day I hope to find 6 couples that I know and do that trip with them, the one I missed.
We have friends we get together with, and do the family trips, Bend or the beach. They are rarer now. We did them before we all popped babies. But it has gotten harder with children and their activities for us all to get together. Washington and Oregon do not have the same spring breaks. Their children or ours are in sports. I do miss those somewhat drunken gatherings. We park our cars and no one drives. There is a hot tub for conversations until 2 in the morning. We solve all our problems and the world's.
I commented to my friend that dropped off the cookies the other day how most of my friends are still married, after 15 or 20 years. they have all survived the statistics. It makes me happy
to know. When you think about it, it means that they are trust worthy and solid human beings that still love each other and are willing to stay the course.
I dated a guy once, my college room mate did not like him, so we didn't go out again. He ended up killing someone, premeditatively, a couple years later. He is in the state pen. Thank goodness I trusted my room mate's judgement. My friends have always looked out for me. Now when I have truly needed them they are still here, waiting to help me in any way they can. I am truly blessed and spoiled. I am looking forward to many more good times of fun and frivolity with my family and my friends. We are going to have one hell of a party when we are through. It just may be a year away.
Monday, February 22, 2010
Good news
I am supposed to be resting. I am at home for the afternoon. Tom is at the hospital. Tom just called. The news was so good I am still crying. Alison, the bone marrow coordinator just informed Tom that in the world wide donor lists there are potentially 80 matches to Riley and 10 good matches with perhaps 8 out of 8 first criteria. I don't want my baby to be sick at all, but this gives us hope. If the ATG does not work we still have hope and another avenue. All those prayers are working.
We weren't sure they would still run the screening after we started ATG. Some times insurance balks until they find out if the ATG works or not. Its a $20,000 cost to run the comparison. I am not going to give up on ATG. I want Riley well, yesterday. But it feels good to know this is not a dead end.
We weren't sure they would still run the screening after we started ATG. Some times insurance balks until they find out if the ATG works or not. Its a $20,000 cost to run the comparison. I am not going to give up on ATG. I want Riley well, yesterday. But it feels good to know this is not a dead end.
Better
Tom has given Riley his I pod. Riley is shouting when he speaks and singing to the music. He is feeling much better. but the fever is still malingering at 100.5 . I am told that the steroids will make Riley feel like he is PMSing so I should cut him a little slack with his aggressive bad manners. I don't know. He needs to behave. But I think giving each of us some space occasionally is a good idea. Even with only the three hours of sleep at home last night I feel refreshed.
Riley got so tangled in his coat rack cords he has started just closing the curtain behind the door and peeing in the corner with his little urinal, just standing up out of bed and going. He says don't look mom.
Riley still has an ugly rash all over his body. the doctor said it was a reaction to the primitive condition of the ATG horse serum. He said it was doing its job and so was Riley's body fighting it.
Riley got so tangled in his coat rack cords he has started just closing the curtain behind the door and peeing in the corner with his little urinal, just standing up out of bed and going. He says don't look mom.
Riley still has an ugly rash all over his body. the doctor said it was a reaction to the primitive condition of the ATG horse serum. He said it was doing its job and so was Riley's body fighting it.
Best Friend
Sunday, Riley's first and Best friend came by with his dad. The boys play. We order a coke from room service I joke its a $10 pop New York prices. I am grateful for the visit of a friend for Riley.
His dad gives me perspective on a father's view. He understands how hard it would be for Tom to concentrate at work with his son sick like this. We will eventually get into a routine.
Riley is telling Tom all about his meds and pills. Tom humorously says Riley has to figure out a way to share the Adavan they give him upon occasion to make him less anxious. Riley says he has a pick so they don't have to poke him. But Riley will willingly poke his dad if he really wants it.
His dad gives me perspective on a father's view. He understands how hard it would be for Tom to concentrate at work with his son sick like this. We will eventually get into a routine.
Riley is telling Tom all about his meds and pills. Tom humorously says Riley has to figure out a way to share the Adavan they give him upon occasion to make him less anxious. Riley says he has a pick so they don't have to poke him. But Riley will willingly poke his dad if he really wants it.
the night
Riley is running a fever. 103 when I arrive at the hospital. His body has started to rash. Red irregular blotches everywhere from under the chin on down. Tylonol only brings the fever down to 102 then 101, but that is as far as it will budge. The nurses check him at 3 and again at 6. He doesn't vomit again. He is happy I am here. He has even started to say please and thank you to the nurses and staff without prompting. The sicker he is the better his manners are getting.
This morning the Doctor comes in. He is more professional today. Concern shows on his face. He checks Riley over. Riley is exhausted. He likes the head of the bed raised and then ends up slipping down into a ball at the bottom. I recline the bed flat and Riley stretches out and continues sleeping.
The nurse comes in to check vitals. He lifts his arm for the blood pressure cuff and I back up from the odor. He stinks. Even the nurse takes a step back for a fresh breath. I tell Riley he needs a bath. He is so tired he doesn't want to order food. I order him oatmeal with maple syrup and brown sugar, and his apple sauce for the pills. The nurse as she is leaving tells us the schedule. He will need his shower before 10:30. That's when he gets his Benedryl to prepare for the 11:00am infusion that lasts 4 hours today. The Benedryl will knock him out and he wont want to shower after that.
I can tell he is tired. he just wants to sleep after the last night. He still has a fever. I tell him if he starts to lose weight they will put that tube in his nose like the boy next door has. It freaked Riley out the first day when they were introduced. He takes a few bites of oatmeal and uses the apple sauce to swallow his pills. No fuss , no big deal anymore taking pills. He is proud of himself, but he doesn't eat much and he rolls over to sleep. I am told he may need 10 to 12 hours a day for sleep.
The school teacher drops by. I tell her Riley had a bad night. I ask about the afternoon,. He perks up in the afternoons, at least he has so far. Tom arrives. We hang out and chat quietly.
My mom calls she wants to know why I didn't call her last night. She lives closer. Riley called me and wanted me I tell her. We can talk to Riley about the option to call Grandma since she lives closer and can get to him faster. I will leave it to Riley's choice. He could call us both next time.
I gave him that cell phone just for this reason and I had him put in Grandma's number.
He's up now. The nurse wrapped his pick line in Saran wrap to keep it sealed and dry. He is showering now. Yeah!! No more stinky boy for a while.
This morning the Doctor comes in. He is more professional today. Concern shows on his face. He checks Riley over. Riley is exhausted. He likes the head of the bed raised and then ends up slipping down into a ball at the bottom. I recline the bed flat and Riley stretches out and continues sleeping.
The nurse comes in to check vitals. He lifts his arm for the blood pressure cuff and I back up from the odor. He stinks. Even the nurse takes a step back for a fresh breath. I tell Riley he needs a bath. He is so tired he doesn't want to order food. I order him oatmeal with maple syrup and brown sugar, and his apple sauce for the pills. The nurse as she is leaving tells us the schedule. He will need his shower before 10:30. That's when he gets his Benedryl to prepare for the 11:00am infusion that lasts 4 hours today. The Benedryl will knock him out and he wont want to shower after that.
I can tell he is tired. he just wants to sleep after the last night. He still has a fever. I tell him if he starts to lose weight they will put that tube in his nose like the boy next door has. It freaked Riley out the first day when they were introduced. He takes a few bites of oatmeal and uses the apple sauce to swallow his pills. No fuss , no big deal anymore taking pills. He is proud of himself, but he doesn't eat much and he rolls over to sleep. I am told he may need 10 to 12 hours a day for sleep.
The school teacher drops by. I tell her Riley had a bad night. I ask about the afternoon,. He perks up in the afternoons, at least he has so far. Tom arrives. We hang out and chat quietly.
My mom calls she wants to know why I didn't call her last night. She lives closer. Riley called me and wanted me I tell her. We can talk to Riley about the option to call Grandma since she lives closer and can get to him faster. I will leave it to Riley's choice. He could call us both next time.
I gave him that cell phone just for this reason and I had him put in Grandma's number.
He's up now. The nurse wrapped his pick line in Saran wrap to keep it sealed and dry. He is showering now. Yeah!! No more stinky boy for a while.
Highs and Lows
Riley is a spoiled brat in some ways. My mother would say in lots of ways. He was a real pill in the morning. I have to remind him to say please and thank you to the nurses and aids. I tell him if he isn't nice they wont be nice back. We are climbing the walls. He is feeling smothered and I am feeling under appreciated.
My sister has agreed to stop by the hospital. She will either sit with Riley or go get Trevor from Longview. It is another beautiful day outside. she doesn't know exactly where Trevor is staying so she encourages me to go and get away for a while. Bond with Trevor on the way home, quality time.
Riley is being so rude to me and everyone as Little Lord Fauntleroy on his throne that I decide to bail for a while. The drive sounds dreamy, even though I really dislike driving. Riley is doing fine, so I leave. I don't even wait for my sister to arrive at the hospital. There is plenty of staff to help Riley and I think maybe he needs some space also. He knows my number and the call buttons for the nurses.
Tory gets to the hospital and Riley is playing Play station. She takes the window seat and waits for me. she thinks I am in the bathroom. Finally after thirty minute of thinking I am hiding in the bathroom, she interrupts Riley's game to ask where I am, only to find out I have already left. She calls me to find out I am almost in Longview. I made good time.
Ever since our trip to the Grand Canyon last summer, when we went through Idaho doing 80, its a lot easier driving fast. i am in my red Ford Taurus, which compared to The Jeep rides like a sports car. I enjoy an hour of stress free conversation with my friends while waiting for Trevor to come back from a lake walk with his buddy. Last time I had seen them, I helped paint their daughter's new bedroom pink. She had been sharing with Mom and Dad. It was time for her big girl room. The room looks adorable, just waiting for those ruffled curtains grandma is planning to make for her.
The boys get back from the lake and Trevor packs up his stuff. He is sad to go, but also wants to see his brother. Hugs are exchanged. These two boys have known each other since T-ball at the Y when they were 4, oldest and bestest friends.
Trevor and I chat while driving. He is looking forward to seeing his brother. On the other hand I am thinking of the logistics of driving to the hospital then driving Trevor home then going back to the hospital. Unconsciously I catch the freeway home rather than the freeway to the hospital. I notice what I have done and ask if Trevor minds going home. He gets upset. He really wants to see Riley at the hospital. He has not been yet, since I shipped him out of town when the crisis began at the end of last week.
We loop round and head to the hospital. He is so big and healthy compared to the other children. His voice doesn't need a bull horn to be heard. He finds the family lounge with left over pizza from an earlier birthday of some other family. There is also cake. The boys play video games. Riley's dinner is getting cold, so Trevor reminds him to eat and gets the tray for him.
Around 7:00 pm Riley gets his end of day shot and shortly breaks out in a bad case of hives all over his body. The nurse is in checking on him. He lifts his arm and asks her if this rash is unusual or if this is expected symptoms. She leaps away to grab a doctor and benedryl. We end up with three checking Riley over. He is now covered and itching like crazy. I wet some cold towels and lay them on his arms and legs. He is not to scratch. If he scratches he could bleed and bleeding is bad. One nurse checks to make sure his nails are cut short. They warn him to tell immediately if his mouth or throat itch.I ask him with was the worse symptom the hives or the aching bones last night when I had to massage him. He says the bones were worse. so, I say, this isn't so bad after all. He asks me to scratch. I use the rough wet towel to rub his legs. I tell him to watch the clock, in fifteen minutes the benedryl will kick in and he will stop itching. Finally about 30 minutes later it is in control and the boys are back to the video game.
After 8:00 pm, it is time to take Trevor home. Trevor has school on Monday. I say I will be back
later. On the drive home I feel exhaustion set in. We come into the house, and I immediately hear the cats crying. They have been stuck in a room all weekend. When I left on Friday and saw Trevor off to school I had opened a can off cat food and brought both cats downstairs, shutting all the upstairs bedroom doors so they would not go pee where they shouldn't. Well, Trevor had come home from school to wait for his ride and had not packed socks. He had gone upstairs and opened those doors got his socks and shut the doors again, but the cats had followed him into the rooms unannounced to Trevor. He shut them in for the bedrooms for the whole weekend. A different bedroom for each cat.
I have not found where they peed , but I know I will eventually. I will pick up a basket or some cloths to wear and find the cat odor. I am so tired I yell at Trevor. He says he didn't mean to do it. I tell him I was relying on him. I send him to his room to bed and go to mine. Its 9:00 pm. I call Riley and ask if he minds my sleeping at home tonight in my own bed. He says that's fine. He is settling in nicely and the nurses check on him.
My head hits the pillow and I am out within minutes. I just have to tell Trevor to stop meowing at the cats. Now that they are free, its as if it never happened for the cats.
Midnight the house phone rings. Riley is crying. He doesn't feel good, he is nauseated. I tell him I am on my way and grab my cloths and dress. I wake Trevor enough to tell him I am going back to the hospital and pray he remembers in the morning. I will call him when its time to get up. I put the phone in his room. Tom will be home today so it will be better tonight. I did love that 3 hours of uninterrupted sleep
I am in the car in less than 5 minutes. The streets are quiet. The phone rings again on the freeway. Its Riley still feeling bad. I tell him less than 25 minutes I'll be there. He asks me to distract him, tell him a story. I try telling him about Trevor locking the cats in the bedrooms for the weekend. Riley says its not helping. He starts to vomit while I am talking to him. He has to vomit into a plastic bin, he tells me the nurses want to see it. After he is through he feels better and wants to know which rooms the cats were locked it. He is relieved it was not his room.
I am speeding and see someone pulled over by the police going the other way. There is barely any traffic, I am really speeding. I slow down to just 10 miles over the speed limit. I pass a police car in the dark with a speed detector. I slow down to five miles over. He doesn't pull out. The exit comes, I take it. The road to the hospital is deserted. I have to drive carefully though, a lot of bikers use this road. There aren't any at this hour but I want to be careful.
I get a parking spot right up front. The doors of the hospital are locked and my heart leaps. How do I get in at this hour. I notice a call button. It takes me a moment to focus and read the instructions. "After hours Push the Button". I push it and a woman's voice asks Last name of who am I visiting. I give Riley's name and room number. She buzzes me in.
My sister has agreed to stop by the hospital. She will either sit with Riley or go get Trevor from Longview. It is another beautiful day outside. she doesn't know exactly where Trevor is staying so she encourages me to go and get away for a while. Bond with Trevor on the way home, quality time.
Riley is being so rude to me and everyone as Little Lord Fauntleroy on his throne that I decide to bail for a while. The drive sounds dreamy, even though I really dislike driving. Riley is doing fine, so I leave. I don't even wait for my sister to arrive at the hospital. There is plenty of staff to help Riley and I think maybe he needs some space also. He knows my number and the call buttons for the nurses.
Tory gets to the hospital and Riley is playing Play station. She takes the window seat and waits for me. she thinks I am in the bathroom. Finally after thirty minute of thinking I am hiding in the bathroom, she interrupts Riley's game to ask where I am, only to find out I have already left. She calls me to find out I am almost in Longview. I made good time.
Ever since our trip to the Grand Canyon last summer, when we went through Idaho doing 80, its a lot easier driving fast. i am in my red Ford Taurus, which compared to The Jeep rides like a sports car. I enjoy an hour of stress free conversation with my friends while waiting for Trevor to come back from a lake walk with his buddy. Last time I had seen them, I helped paint their daughter's new bedroom pink. She had been sharing with Mom and Dad. It was time for her big girl room. The room looks adorable, just waiting for those ruffled curtains grandma is planning to make for her.
The boys get back from the lake and Trevor packs up his stuff. He is sad to go, but also wants to see his brother. Hugs are exchanged. These two boys have known each other since T-ball at the Y when they were 4, oldest and bestest friends.
Trevor and I chat while driving. He is looking forward to seeing his brother. On the other hand I am thinking of the logistics of driving to the hospital then driving Trevor home then going back to the hospital. Unconsciously I catch the freeway home rather than the freeway to the hospital. I notice what I have done and ask if Trevor minds going home. He gets upset. He really wants to see Riley at the hospital. He has not been yet, since I shipped him out of town when the crisis began at the end of last week.
We loop round and head to the hospital. He is so big and healthy compared to the other children. His voice doesn't need a bull horn to be heard. He finds the family lounge with left over pizza from an earlier birthday of some other family. There is also cake. The boys play video games. Riley's dinner is getting cold, so Trevor reminds him to eat and gets the tray for him.
Around 7:00 pm Riley gets his end of day shot and shortly breaks out in a bad case of hives all over his body. The nurse is in checking on him. He lifts his arm and asks her if this rash is unusual or if this is expected symptoms. She leaps away to grab a doctor and benedryl. We end up with three checking Riley over. He is now covered and itching like crazy. I wet some cold towels and lay them on his arms and legs. He is not to scratch. If he scratches he could bleed and bleeding is bad. One nurse checks to make sure his nails are cut short. They warn him to tell immediately if his mouth or throat itch.I ask him with was the worse symptom the hives or the aching bones last night when I had to massage him. He says the bones were worse. so, I say, this isn't so bad after all. He asks me to scratch. I use the rough wet towel to rub his legs. I tell him to watch the clock, in fifteen minutes the benedryl will kick in and he will stop itching. Finally about 30 minutes later it is in control and the boys are back to the video game.
After 8:00 pm, it is time to take Trevor home. Trevor has school on Monday. I say I will be back
later. On the drive home I feel exhaustion set in. We come into the house, and I immediately hear the cats crying. They have been stuck in a room all weekend. When I left on Friday and saw Trevor off to school I had opened a can off cat food and brought both cats downstairs, shutting all the upstairs bedroom doors so they would not go pee where they shouldn't. Well, Trevor had come home from school to wait for his ride and had not packed socks. He had gone upstairs and opened those doors got his socks and shut the doors again, but the cats had followed him into the rooms unannounced to Trevor. He shut them in for the bedrooms for the whole weekend. A different bedroom for each cat.
I have not found where they peed , but I know I will eventually. I will pick up a basket or some cloths to wear and find the cat odor. I am so tired I yell at Trevor. He says he didn't mean to do it. I tell him I was relying on him. I send him to his room to bed and go to mine. Its 9:00 pm. I call Riley and ask if he minds my sleeping at home tonight in my own bed. He says that's fine. He is settling in nicely and the nurses check on him.
My head hits the pillow and I am out within minutes. I just have to tell Trevor to stop meowing at the cats. Now that they are free, its as if it never happened for the cats.
Midnight the house phone rings. Riley is crying. He doesn't feel good, he is nauseated. I tell him I am on my way and grab my cloths and dress. I wake Trevor enough to tell him I am going back to the hospital and pray he remembers in the morning. I will call him when its time to get up. I put the phone in his room. Tom will be home today so it will be better tonight. I did love that 3 hours of uninterrupted sleep
I am in the car in less than 5 minutes. The streets are quiet. The phone rings again on the freeway. Its Riley still feeling bad. I tell him less than 25 minutes I'll be there. He asks me to distract him, tell him a story. I try telling him about Trevor locking the cats in the bedrooms for the weekend. Riley says its not helping. He starts to vomit while I am talking to him. He has to vomit into a plastic bin, he tells me the nurses want to see it. After he is through he feels better and wants to know which rooms the cats were locked it. He is relieved it was not his room.
I am speeding and see someone pulled over by the police going the other way. There is barely any traffic, I am really speeding. I slow down to just 10 miles over the speed limit. I pass a police car in the dark with a speed detector. I slow down to five miles over. He doesn't pull out. The exit comes, I take it. The road to the hospital is deserted. I have to drive carefully though, a lot of bikers use this road. There aren't any at this hour but I want to be careful.
I get a parking spot right up front. The doors of the hospital are locked and my heart leaps. How do I get in at this hour. I notice a call button. It takes me a moment to focus and read the instructions. "After hours Push the Button". I push it and a woman's voice asks Last name of who am I visiting. I give Riley's name and room number. She buzzes me in.
Sunday, February 21, 2010
Sunday morning
Another beautiful day out the window. The weather will probably change as soon as it is time to go home. They checked vitals last night. Riley said his nose was plugged at bed time. He had a slight fever. During the night it went away. This morning I asked if his nose was still plugged and he said his throat felt a little sore. My chest tightens. I pray it is nothing. the nurse taking vitals says she will mention it to the doctors.
He lies in bed draped with a prayer shawl gifted to us by one of his teachers. Trevor brought it home from school. Riley likes the soft feel and requests it now. I believe he can feel the loving hands that knit it. Eventually, he will have to pick up the phone and order breakfast, not to forget the apple sauce for his pills.
We wait
He lies in bed draped with a prayer shawl gifted to us by one of his teachers. Trevor brought it home from school. Riley likes the soft feel and requests it now. I believe he can feel the loving hands that knit it. Eventually, he will have to pick up the phone and order breakfast, not to forget the apple sauce for his pills.
We wait
Telling stories
Mom has been telling stories to Riley about my childhood. Riley is not happy about having to continue to pee in the urinals,for all to see, but one of the side effects is blockage so the doctors want to make sure his output continues properly. So Mom tells Riley an embarrassing moment about me, to cheer him up. Like the time when we were road tripping in the Barracuda. I had to go potty. Mom kept a little yellow bowl with a handle in the car so we could just go where ever. No need to find a gas station when children are small. Tory and I were about 4 and 7. This was the pre seat belt era, when children built forts with blankets in the back seat and fought for space. I guess they still fight for space once they give up the car seat.
Well, Mom sends me back into the trunk area with the "yellow potty" , while Dad continues driving down the freeway. "No one will see you" she says. So there I am using the yellow potty, when Dad decides to pass a greyhound bus. All these people are looking down at me through the hatchback trunk window. I am mortified. To this day I still don't know if Dad did it on purpose. He has a funny sense of humor sometimes. It made Riley laugh. At least he gets to pee with no one watching.
He tells me he has fun peeing in odd spots in the bathroom now. He will go into the shower with his jar. He thought it would be funny to leave it in the shower for me to find. He was disappointed I didn't even notice. He had to tell me what he' been doing. We really have to work at finding entertaining things to do. Maybe I should bring Trevor to spice things up a bit.
Trevor is just such a bull in a china shop
Well, Mom sends me back into the trunk area with the "yellow potty" , while Dad continues driving down the freeway. "No one will see you" she says. So there I am using the yellow potty, when Dad decides to pass a greyhound bus. All these people are looking down at me through the hatchback trunk window. I am mortified. To this day I still don't know if Dad did it on purpose. He has a funny sense of humor sometimes. It made Riley laugh. At least he gets to pee with no one watching.
He tells me he has fun peeing in odd spots in the bathroom now. He will go into the shower with his jar. He thought it would be funny to leave it in the shower for me to find. He was disappointed I didn't even notice. He had to tell me what he' been doing. We really have to work at finding entertaining things to do. Maybe I should bring Trevor to spice things up a bit.
Trevor is just such a bull in a china shop
Pearls
Mom always dresses up when she goes shopping at Nordstrom. She used to wear a fur coat downtown. If she took us out with her we had to dress up also. She said you get better service if you look like are someone special, especially someone with money. I am dressed in my clubbing cloths, pearls and dresses. I am probably the best dressed parent on the ward. I could be mistaken for the professional staff. It makes me feel better, being dressed up.
Yesterday at rounds, I was sitting in my window seat when the doctors arrived. The lead doctor comes over to talk to me about Riley's care. he crouches on the floor to get down to eye level with me, but that puts him below eye level. I am listening for a couple of minutes, when it dawns on me he must be incredibly uncomfortable crouched like that. He is probably close to my age and my legs would be killing me if it were me. I graciously offer room on my huge window seat for him to sit. He gratefully accepts. I felt a little like a queen and her court. It must have been the pearls I was wearing, for him to be that respectful, crouching before me, when there was plenty of room on the bench.
PS I found the spell check in the program today. Yeah
Yesterday at rounds, I was sitting in my window seat when the doctors arrived. The lead doctor comes over to talk to me about Riley's care. he crouches on the floor to get down to eye level with me, but that puts him below eye level. I am listening for a couple of minutes, when it dawns on me he must be incredibly uncomfortable crouched like that. He is probably close to my age and my legs would be killing me if it were me. I graciously offer room on my huge window seat for him to sit. He gratefully accepts. I felt a little like a queen and her court. It must have been the pearls I was wearing, for him to be that respectful, crouching before me, when there was plenty of room on the bench.
PS I found the spell check in the program today. Yeah
Change
I had a dream last night. I can't decide if it was a nightmare or not. It caused me stress. I drempt Tom had given our house back to the bank. It is still worth more than we owe on the mortgage. But why bother with the hastle of selling it ourselves. Having to keep it clean all the time and in perfect show condition. That has some value also in bother.
He brings us home to a new house. Its a fixer, but I am not sure I like it. It has step downs and stairs everywhere. t I am clumsy, I hate step downs. My next house is going to have everything on the main floor so we can grow old in it, all the way to wheel chairs and walkers. My dad taught me that. The house is dirty. The back yard has a pool and hot tub for the boys, but it is filthy. Tom is getting mad because I am not jumping up and down with glee over his choice. Its a fixer, I always say I want a fixer.
He tells me he payed cash and we don't have a mortgage any more. I start remodeling in my mind. I will rip out the carpet on the stairs, even move the stairs with this kind of cash flow. I envision paint colors. I go look for a phone book to call a pool cleaning service. But Tom is still mad at me for not being excited at first. I am still not thrilled with the steps everywhere, but I am also trying to figure out how I can cheaply raise the floors to one level.
Life is not perfect. You take what you get and make the best of it.
He brings us home to a new house. Its a fixer, but I am not sure I like it. It has step downs and stairs everywhere. t I am clumsy, I hate step downs. My next house is going to have everything on the main floor so we can grow old in it, all the way to wheel chairs and walkers. My dad taught me that. The house is dirty. The back yard has a pool and hot tub for the boys, but it is filthy. Tom is getting mad because I am not jumping up and down with glee over his choice. Its a fixer, I always say I want a fixer.
He tells me he payed cash and we don't have a mortgage any more. I start remodeling in my mind. I will rip out the carpet on the stairs, even move the stairs with this kind of cash flow. I envision paint colors. I go look for a phone book to call a pool cleaning service. But Tom is still mad at me for not being excited at first. I am still not thrilled with the steps everywhere, but I am also trying to figure out how I can cheaply raise the floors to one level.
Life is not perfect. You take what you get and make the best of it.
Saturday, February 20, 2010
Tackle Riley's room
I am looking for volunteers for Wednesday and Thursday to tackle Riley's room while he is at the hospital. We will paint his walls and ceiling with semi gloss low emissions paint. His walls still have the original house flat white primer. They can't be wiped without taking the texture off. We are taking out the carpet Wednesday morning. Then we will lay the laminate I already have.
I bought the flooring last year when grandpa tom Sr moved out and I replace all the floors in the hall and his bedroom. I got this great deal at Lumber liquidators $0.49 a square foot. I bought the whole pallet of 1500 square feet. I have enough to do Riley's room and probably Trevor's floor also.
Mom said she had a guy that would come over to move the furniture out and rip out the carpet on Wednesday morning. I figure, with help, I can get the project done in two days, three days max. My neighbor said she could help paint. But I would like two more people. Trevor's room doesn't need painting but we could do his floors at the same time as the painting of Riley's room.
Then do Riley's floor.
I did the hall in 3 days and every board had to be cut. The guest room to 3 days. But it was almost finished in two. That was by myself. The boys rooms are small. I could just do Riley's room and skip Trevor's until later, just to be safe that I complete the project. But it will give us a couple of days to air it out before Riley comes home.
My sister bought us an air purifier for Riley. It filters molds and fungus., which are truly dangerous for Riley.
If you are interested send me an e-mail or let me know. I will see if we can pull this off.
I bought the flooring last year when grandpa tom Sr moved out and I replace all the floors in the hall and his bedroom. I got this great deal at Lumber liquidators $0.49 a square foot. I bought the whole pallet of 1500 square feet. I have enough to do Riley's room and probably Trevor's floor also.
Mom said she had a guy that would come over to move the furniture out and rip out the carpet on Wednesday morning. I figure, with help, I can get the project done in two days, three days max. My neighbor said she could help paint. But I would like two more people. Trevor's room doesn't need painting but we could do his floors at the same time as the painting of Riley's room.
Then do Riley's floor.
I did the hall in 3 days and every board had to be cut. The guest room to 3 days. But it was almost finished in two. That was by myself. The boys rooms are small. I could just do Riley's room and skip Trevor's until later, just to be safe that I complete the project. But it will give us a couple of days to air it out before Riley comes home.
My sister bought us an air purifier for Riley. It filters molds and fungus., which are truly dangerous for Riley.
If you are interested send me an e-mail or let me know. I will see if we can pull this off.
Cute doctor
I forgot to mention cute Dr Jonathan. He's a very friendly first year. He stopped by to see Riley. Riley had asked the day before if he could see his own x-rays of the pick line after it was put in. Jonathan made the time just special to bring up Rileys charts on the computer. There was an x-ray from the first night in the ER when they were lookng to make sure there was no fluid in the lungs. Then he pulled up the x ray taken after the pick was inserted.
The pick runs from the upper arm accross the chest and down to the used blood side of the heart. It is two lines in one, so they can draw blood while still keeping a drip going. We could see it like a string running through the picture. I had no idea the heart was so low and in the middle. Riley said he knew because his wellness teacher had an internal organ skeliton at school she had been showing the students. It makes sence when you think that when people are trained to do CPR it is in the middle not off to one side.
Jonathon also pointed out Riley's stomach with air in it. He spoke about the bones that grow marrow, the tibia, the furmer, the pelvice and the back bone and spine. It was just a drop in visit to inform a curious boy. I was talking to another doctor who told me shifts can be 30 hours long and a doctor may get time to sleep briefly but not always. Tom told me OCEA makes mill workers leave after 16 hours max and they can't come back for 6 hours after that or something like that. Tom tells me I am eighty percent right when I repeat something he tells me.
I sure would want a doctor at the beginning of his shift working on me, not the end.
The pick runs from the upper arm accross the chest and down to the used blood side of the heart. It is two lines in one, so they can draw blood while still keeping a drip going. We could see it like a string running through the picture. I had no idea the heart was so low and in the middle. Riley said he knew because his wellness teacher had an internal organ skeliton at school she had been showing the students. It makes sence when you think that when people are trained to do CPR it is in the middle not off to one side.
Jonathon also pointed out Riley's stomach with air in it. He spoke about the bones that grow marrow, the tibia, the furmer, the pelvice and the back bone and spine. It was just a drop in visit to inform a curious boy. I was talking to another doctor who told me shifts can be 30 hours long and a doctor may get time to sleep briefly but not always. Tom told me OCEA makes mill workers leave after 16 hours max and they can't come back for 6 hours after that or something like that. Tom tells me I am eighty percent right when I repeat something he tells me.
I sure would want a doctor at the beginning of his shift working on me, not the end.
Away at Dinner
We go to the Thia Rose for dinner. We have stuffed meat wraps for starters. We then have coconut soup. Pad Thia and a delicious pumpkin and chicken curry dish my dad recommends. The Pumpkin with curry turns out to be my favorite. We have hot tea with dinner. no one orders a cocktail. I feel like I need to have all my faculties unimpaired by alcohol. these days. I haven't had a glass of wine since our first visit to Dornbeckers. Tom and I had a glass after we got home that night with the diagnosis. I think my sister and dad follow my lead. Or maybe they just don't drink anymore. Its a new age we live in with drinking and driving.
I enjoy my dinner, but we don't linger. Just as well, because when we arrive back at the room. My mother is stressed. Riley has had the chills or shakes just ten minutes earlier and put himself to bed. His legs ache and the nurse has given him tylonol. I can tell my mom is freaked. She leaves. Its 7:45pm.
My sister lingers for a short while, but we can't really talk because it bothers Riley. On the way out we weigh ourselves on the fancy scale in the hall. Its in kilos though so we will have to translate it. Neither of us knows the pound translation. I had just used the bathroom and lost a kilo of weight. Too much information?.
I come back in the room and Riley asks me to rub his "buttox". "What?"" My butt is sore,mom, so are my legs, will you give me a massage? ". Of course. I massage his legs and buttox. His legs feel like they do when we have been skiing, tense and sore. Its a side effect of the strong meds, aching muscles. If Tom were here, would he massage Riley's "buttox"?
Riley spikes a small fever at his 8:30 temperature check. The nurse goes to find a doctor. He decides to draw a blood culture. The results wont be back for days though. They take the blood from both lines in the pick. They want to make sure the line is clear of infection. The tylonol kicks in and the temperature drops slightly within the half hour. But after the nurse leave Riley says his nose is plugged. He also says his heart is racing but tells me that is a listed side effect of the treatment. The nurse will be back in another hour to check him. I'll tell her then and see if Riley still has a plugged nose. They will be checking more frequently tonight after his first treatment.
Tomorrow the treatment will be sped up to 6 hour and the next day to 4 hours, where it will stay for the rest of the week. That is on top of all the pills he has to take. The nurse has reminded him to order apple sauce with breakfast so he can take his pills in the morning without crisis. He did a really great job at bed time tonight with the pills in his apple sauce.
He is so big that Riley's feet hit the footboard. The mattress has slid down. I will have to adjust it when he gets up again. We tried removing the footboard, but it turned out to be the power center for all the remotes. Riley likes to adjust the bed a lot and he has to be able to call the nurse so we put the footboard back on the bed. DG (my dad in Tucson) used to have that problem in the hospital. The foot board drove him crazy. As soon as Riley gets up to use the urinal in the bathroom again, I leap up and adjust the mattress, shoving it up to the head.
Time for bed. Tomorrow, Sunday, will be another adventure.
I enjoy my dinner, but we don't linger. Just as well, because when we arrive back at the room. My mother is stressed. Riley has had the chills or shakes just ten minutes earlier and put himself to bed. His legs ache and the nurse has given him tylonol. I can tell my mom is freaked. She leaves. Its 7:45pm.
My sister lingers for a short while, but we can't really talk because it bothers Riley. On the way out we weigh ourselves on the fancy scale in the hall. Its in kilos though so we will have to translate it. Neither of us knows the pound translation. I had just used the bathroom and lost a kilo of weight. Too much information?.
I come back in the room and Riley asks me to rub his "buttox". "What?"" My butt is sore,mom, so are my legs, will you give me a massage? ". Of course. I massage his legs and buttox. His legs feel like they do when we have been skiing, tense and sore. Its a side effect of the strong meds, aching muscles. If Tom were here, would he massage Riley's "buttox"?
Riley spikes a small fever at his 8:30 temperature check. The nurse goes to find a doctor. He decides to draw a blood culture. The results wont be back for days though. They take the blood from both lines in the pick. They want to make sure the line is clear of infection. The tylonol kicks in and the temperature drops slightly within the half hour. But after the nurse leave Riley says his nose is plugged. He also says his heart is racing but tells me that is a listed side effect of the treatment. The nurse will be back in another hour to check him. I'll tell her then and see if Riley still has a plugged nose. They will be checking more frequently tonight after his first treatment.
Tomorrow the treatment will be sped up to 6 hour and the next day to 4 hours, where it will stay for the rest of the week. That is on top of all the pills he has to take. The nurse has reminded him to order apple sauce with breakfast so he can take his pills in the morning without crisis. He did a really great job at bed time tonight with the pills in his apple sauce.
He is so big that Riley's feet hit the footboard. The mattress has slid down. I will have to adjust it when he gets up again. We tried removing the footboard, but it turned out to be the power center for all the remotes. Riley likes to adjust the bed a lot and he has to be able to call the nurse so we put the footboard back on the bed. DG (my dad in Tucson) used to have that problem in the hospital. The foot board drove him crazy. As soon as Riley gets up to use the urinal in the bathroom again, I leap up and adjust the mattress, shoving it up to the head.
Time for bed. Tomorrow, Sunday, will be another adventure.
Bringing cookies
Rileys 3:00 am platelet count was at 45 this morning from 60 yesterday. The pick line is working great. Around 11:00 the ATG starts. It is a chemo drug, this horse serum. It will run 8 hours today. Riley roams the halls pulling his coat rack of fluids behind him. There are other yoiunger children with parents trailing behind pushing coat racks and scooters. I know coat rack is probably not the right term, but that is what they look like.
My Mom comes by with plaid pjs and keeps us company. She has raided my dad's stash of safeway cookies for us. She agrees to come back later to watch riley tonight while my sister and dad go out to dinner. She leaves and an old friend I havent seen in a couple of years drops by with home made cookies. Riley eat at least 6. They are delicious. I take the safeway cookies to the nurses station. Mom taught me keep the nurses happy and they will keep you happy. The doctors come in on their rounds to check on Rileys progress. he is taking this first dose quite well so far.
Tom calls in the afternoon. He and his partner are in second place after the first day. He has won money. I tell him not to lose it playing poker or Bernie tonight. Its another tradition of the weekend, the party and gambling Saturday night. He tells me he is going to continue taking time off from work. I don't know how I feel about it. I kind of am in a zone. I am getting my system down and organized. I feel like this is my job, the children and caring for them sick or well. His needing to take the time off implies I can't do my job. I know he feels the need to be here, but my feeling is his job is his job at work. My fear is if we need him later more, he wont have the time available without risking his job. This is a year long if not longer treatment. I am in control now and see what needs to be done for the children. He fired someone just resently for abuse of the family leave act. We can discuss it when he gets back. I want him to enjoy the weekend.
My sister comes and is happy to see Riley doing so well. We plan to go out to dinner
My Mom comes by with plaid pjs and keeps us company. She has raided my dad's stash of safeway cookies for us. She agrees to come back later to watch riley tonight while my sister and dad go out to dinner. She leaves and an old friend I havent seen in a couple of years drops by with home made cookies. Riley eat at least 6. They are delicious. I take the safeway cookies to the nurses station. Mom taught me keep the nurses happy and they will keep you happy. The doctors come in on their rounds to check on Rileys progress. he is taking this first dose quite well so far.
Tom calls in the afternoon. He and his partner are in second place after the first day. He has won money. I tell him not to lose it playing poker or Bernie tonight. Its another tradition of the weekend, the party and gambling Saturday night. He tells me he is going to continue taking time off from work. I don't know how I feel about it. I kind of am in a zone. I am getting my system down and organized. I feel like this is my job, the children and caring for them sick or well. His needing to take the time off implies I can't do my job. I know he feels the need to be here, but my feeling is his job is his job at work. My fear is if we need him later more, he wont have the time available without risking his job. This is a year long if not longer treatment. I am in control now and see what needs to be done for the children. He fired someone just resently for abuse of the family leave act. We can discuss it when he gets back. I want him to enjoy the weekend.
My sister comes and is happy to see Riley doing so well. We plan to go out to dinner
So far so good
It has been a lovely day. The sun shines through the window onto the day bed. I need to change the sheet tonight. Nice that someone else is doing the laundry. I asked Mom to buy another couple of those pj bottoms.
Visitors Welcome.. Please
Ok, bonding with your child goes only so far. Today, Riley had his first experience with taking pills that are not chewable. After a huge brew haha about how he couldn't take the pills. He could do it with apple sauce, but of course, there was none available. We tried it with chocolate pudding. He got it done with a lot of fuss. All but one huge pill, probably the most important one.
Then he thought he was going to throw up. He was shaking and holding the green plastic tub in his lap just in case. Crying and saying he didn't like any of this. He asks the nurse if this is going to happen all the time. She says he shouldn't be feeling sick at all yet, the pills he just took were Tylonal and benadril and another anti nausia med. The big pill he hasn't taken yet is the drug.
He pulled it together and went to check out another movie, a comedy this time, Antz.
I met a mom while filling up Riley's bottle. She was here with her son who is also 14. She has been in and out of Dornbeckers for a year. She said I looked new. I had that deer in the headlights look still. She had her daughter with her today. The daughter was cute and had built a giant ferris wheel like Riley did in his x-block at school. That got Riley out of bed and social.
We traded contact information since they were headed home for the week. We will probably see them again in clinic. They live two hours from the hospital. The mom said they sometimes stay at McDonald House. I feel guilty my family just lives over the hill and our drive is 30 minutes normally.
The nurse come back Riley has finally taken the big pill. His apple sauce came
Then he thought he was going to throw up. He was shaking and holding the green plastic tub in his lap just in case. Crying and saying he didn't like any of this. He asks the nurse if this is going to happen all the time. She says he shouldn't be feeling sick at all yet, the pills he just took were Tylonal and benadril and another anti nausia med. The big pill he hasn't taken yet is the drug.
He pulled it together and went to check out another movie, a comedy this time, Antz.
I met a mom while filling up Riley's bottle. She was here with her son who is also 14. She has been in and out of Dornbeckers for a year. She said I looked new. I had that deer in the headlights look still. She had her daughter with her today. The daughter was cute and had built a giant ferris wheel like Riley did in his x-block at school. That got Riley out of bed and social.
We traded contact information since they were headed home for the week. We will probably see them again in clinic. They live two hours from the hospital. The mom said they sometimes stay at McDonald House. I feel guilty my family just lives over the hill and our drive is 30 minutes normally.
The nurse come back Riley has finally taken the big pill. His apple sauce came
Toilets
Riley is getting tired of peeing in the cups. He doesn't like the feeling of the warm liquid going through the plastic jar between his fingers. Last night he had to ask if he could poop in the toilet or if they wanted a specimen of that also. No, just the pee is all they are measuring at this time. He came out of the bathroom and asked if I was getting tired of seeing his pee. I told him it was nothing new. He never flushed the toilets anyway. I noticed this morning, the advantage is he is not peeing on the seat either. I have friends who will appreciate this comment.
ATG
Tome would be here during my personal time. He will have his own time when he gets back. Right now I want this time, selfish as it is.
They come later to inject the poison into Riley. They are going to stop his bone marrow and reboot it theorectially. The doctors tell me Dornbeckers uses horse syrum over the other option of rabbit syrum. they could not tell me why one was better than the other, but there is a debate raging over the subject. I asked why not cow or pig. It got a chuckle. Though one doctor said she knew why they dont use pig. Then she didn't continue and the conversation moved on.
It has been a beautiful few days out the window. Riley asked me to snuggle in his faniy twin bed last night, while we talked. He asked why hospitals don't have baconies and I explained the air is purified. On his floor, the air coming in is cleaned. When my dad was in the hopital, the air was pressurized to prevent germs from escaping. There are lovely court yards through out the hospital, but Riley can't leave the ward.
Riley read the synopsis of the drug side effects last night nausia, vomiting, seisures. He asked if it was really necessary that he had to take it. Did he have a choice?He asked. I said not really. If he didn't take the drugs he would probably die. He is 14, I have always been open with my boys. When they ask why, I tell them. Besides he can tell from his father and my faces that this is serious stuff. Being kept in the dark would drive him to think he was dieing tomorrow.
He said something like that yesterday. He thinks the boy next door has a bigger room. He made the comment that He, Riley was the one that was dieing so why didn't he have the bigger room. I told him he wasn't dieing and to hush because there were very sick children around. The boy next door had just had a transplant himself. He has a tube down his nose to his stomach because he wasn't eating. He is a long termer. We are just starting our stay.
I had Riley order a big breakfast 3 eggs french toast and bacon. He loves the french toast. Every day this week has been french toast. I debated the big meal in case he gets sick later, but on hopital time it will probably all be digested before they start. Most of it is soft food anyway. Its just the bacon that might make it hard coming back up. I'll tell him to chew well.
They come later to inject the poison into Riley. They are going to stop his bone marrow and reboot it theorectially. The doctors tell me Dornbeckers uses horse syrum over the other option of rabbit syrum. they could not tell me why one was better than the other, but there is a debate raging over the subject. I asked why not cow or pig. It got a chuckle. Though one doctor said she knew why they dont use pig. Then she didn't continue and the conversation moved on.
It has been a beautiful few days out the window. Riley asked me to snuggle in his faniy twin bed last night, while we talked. He asked why hospitals don't have baconies and I explained the air is purified. On his floor, the air coming in is cleaned. When my dad was in the hopital, the air was pressurized to prevent germs from escaping. There are lovely court yards through out the hospital, but Riley can't leave the ward.
Riley read the synopsis of the drug side effects last night nausia, vomiting, seisures. He asked if it was really necessary that he had to take it. Did he have a choice?He asked. I said not really. If he didn't take the drugs he would probably die. He is 14, I have always been open with my boys. When they ask why, I tell them. Besides he can tell from his father and my faces that this is serious stuff. Being kept in the dark would drive him to think he was dieing tomorrow.
He said something like that yesterday. He thinks the boy next door has a bigger room. He made the comment that He, Riley was the one that was dieing so why didn't he have the bigger room. I told him he wasn't dieing and to hush because there were very sick children around. The boy next door had just had a transplant himself. He has a tube down his nose to his stomach because he wasn't eating. He is a long termer. We are just starting our stay.
I had Riley order a big breakfast 3 eggs french toast and bacon. He loves the french toast. Every day this week has been french toast. I debated the big meal in case he gets sick later, but on hopital time it will probably all be digested before they start. Most of it is soft food anyway. Its just the bacon that might make it hard coming back up. I'll tell him to chew well.
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