The teacher came today. I think she will do a great job. Riley tried at first to be bossy. Interrupting sentences and her train of thought. She quickly figured him out. It took a while to sort the homework out. She made a list of assignments for him to tackle. She will be back next Tuesday.
I had Trevor stay in his room while she was here. But later in the evening he came out and we all watched a little TV as a treat. Trevor decided to stick a balloon string in his mouth and chew on it. He is kind of an oral boy. If it fits in his mouth he will put it there. I made him pop the balloon and throw it all away. Riley might have wanted to play with it later when it was covered in mouth germs from a vomit boy. It also gave me an excuse to toss a balloon. I have 4 lingering on the ceiling of my two story entry, that we can't reach.
Tom came home and I headed to the school. Today was the high school orientation for eighth graders. I am glad I went. There are papers that need to be turned in. Who knows, in six months Riley might be able to attend school again. I want to make sure that if he cant carry a full load of classes, he at least gets the ones he really needs for college.
The councilor recommends a resume or summary for Riley so the school has a name and face to go with all the accommodations they might need to make for him. No PE for as long as the picc line is in. A picc can last up to two years. Riley will have his in for at least a year. Even after successful treatment, they will be drawing blood and checking on him regularly.
At the end of the meeting, it hit me that I didn't even know if my baby would be alive come August, let alone attending high school with all these other children in the room. A parent from football came up to give me a hug. She had heard about Riley. I cried on her shoulder. All the dreams and ambitions of all these families, and I just count in days and weeks now.
Tom gave me a hug when I got home. I spoke to Riley about what I had heard at the meeting. Then Tom read my blog about how upset I was with Trevor getting sick. Tom was... not happy to put it delicately. He reminded me that I have two children. I know that. Trevor would help an old lady cross the street with her bags. Riley wouldn't see even see the old lady. My job is to keep both boys from being hit by a passing car.
I know Trevor didn't want to be sick or purposefully get sick. But if I erred, it was on the side of caution. We can't afford any mistakes. Trevor got it. He stayed in his room all day. He weighs as much as I do. If he had really wanted to rebel I couldn't stop him. He slept most of the day anyway, an indication he needed the rest. I don't allow TV when children are home sick. You miss school, you're sick, then you need to rest. TV is a treat. Riley didn't get any TV either. He stayed in his room as a precaution most of the day. Tom thinks that the TV rule is excessive.
Tom is a TV addict. We can't go on vacation with him anywhere that doesn't have a TV. My children can live without it for a day. We didn't even last the day anyway, by the time Tom got home from work we all were watching House. He was mad because I was more worried about Riley's health than Trevors feelings. How could I be mad at Trevor for getting sick? He couldn't help it. That was Tom's argument.
I went outside and cried some more. I realize Tom is as distressed as I am. I love my boys very much, both boys. He should not have doubted me. Trevor knows how serious this all is. I cannot help responding the way I did. Maybe people are right who tell me I should ship my sick children away, but I disagree. I would rather do what I did yesterday with keeping each boy in his room. Isolating everyone until the danger has passed, including myself. I will decontaminate Trevor's room today. By isolating him until he felt better that is the only room I have to stress over. I feel pretty secure that I did the best I could to contain the germ. If I had to do it over again I would probably feel the same way and have the same response.
I am glad the day is passed and behind us. Today is another hurdle. We are going to ask how good a match is the bone marrow donor they may have found. After 20 red cell transfusions the success of the graft falls. The most successful surgeries are done within 3 months of diagnosis. It might be better to go with the bone marrow than wait. The treatment puts Riley back in the hospital for another long stay. We wouldn't even know how successful the surgery was until 100 days after. That is the amount of time the doctors give for rejection.
Contact a total stranger, inconveinience himself, and ask if he is still willing and able to save a child's life that he doesn't even know. Please say yes. Then do we do it? Torture Riley to the edge of death?
Thursday, March 4, 2010
Wednesday, March 3, 2010
Anal children
Honestly if anyone can handle a disease like this its Riley. I told Riley Trevor was in quarantine and sick throwing up. I recommended Riley stay in his room until we decontaminate the house fully. He points at the air filter my sister bought for us. I mentally thank her. If Riley doesn't get sick, that machine is worth every penny.
Riley hasn't eaten breakfast. He found the frosted flakes yesterday and is looking forward to a big bowl. I tell him to check the milk first. I had just bought a new gallon yesterday and wanted to make sure he gets the fresh one. He goes down to the kitchen and the first thing he does is put on rubber gloves. He then grabs the wipes and says he is going to wipe light switches. The switches definately needed wiping. He eats his breakfast and then he teases me. Telling me how much he enjoys taking his pills, how they are the best breakfast food he knows. He eats them with yogurt. Once done he grimaces and says"nasty". but the pills are done. He grabs his computer and heads to his room. I even hear him use the bathroom, flush and wash his hands. He has quickly caught on to this new cleanliness.
I had wiped down his bathroom while he ate, so the room would be un contaminated. I am having Trevor use mine today. Trevor had to dump out his own bowl and rinse it himself. he went back to his room and shut the door. He realizes how serious his illness is. I bought a mask at the hardware store yesterday, a just in case purchase. I had not anticipated using it so soon. I will wear it when I go in to check on him. He probably needs a little love. I hope this teaches him to use soap and wash more thoroughly. I just want Riley to get through the next few days without getting this bug.
I am still tackling laundry. Every time the pile shinks, some one adds more. I need to change Riley's bedding, well Trevor's also and my own. Right there is an all day job. Better get started.
Riley hasn't eaten breakfast. He found the frosted flakes yesterday and is looking forward to a big bowl. I tell him to check the milk first. I had just bought a new gallon yesterday and wanted to make sure he gets the fresh one. He goes down to the kitchen and the first thing he does is put on rubber gloves. He then grabs the wipes and says he is going to wipe light switches. The switches definately needed wiping. He eats his breakfast and then he teases me. Telling me how much he enjoys taking his pills, how they are the best breakfast food he knows. He eats them with yogurt. Once done he grimaces and says"nasty". but the pills are done. He grabs his computer and heads to his room. I even hear him use the bathroom, flush and wash his hands. He has quickly caught on to this new cleanliness.
I had wiped down his bathroom while he ate, so the room would be un contaminated. I am having Trevor use mine today. Trevor had to dump out his own bowl and rinse it himself. he went back to his room and shut the door. He realizes how serious his illness is. I bought a mask at the hardware store yesterday, a just in case purchase. I had not anticipated using it so soon. I will wear it when I go in to check on him. He probably needs a little love. I hope this teaches him to use soap and wash more thoroughly. I just want Riley to get through the next few days without getting this bug.
I am still tackling laundry. Every time the pile shinks, some one adds more. I need to change Riley's bedding, well Trevor's also and my own. Right there is an all day job. Better get started.
Trevor's barfing
PTA was wonderful. Dealing with fun school activities. Seeing my friends, returning dishes. They did ask after Riley of course. That is always hard, but therapeutic also. I came home and cleaned up the kitchen and got the children ready for bed.
Trevor woke for school this morning. He said he didn't feel well. His stomach was upset. Just Monday he had said some one threw up at school. I can't help being furious at him. He did not wash his hands well enough. He did not stay far enough away from the sick ones. I give him the vomit bowl and say he is not to leave his room all day. He is on quarantine. He could kill his brother.
I grab Clorox wipes from the kitchen and start wiping surfaces. The banister on the stairs, I am wiping every day. The tops of the computer keyboards get wiped. The game controllers in the game room get a wipe. Anything that Trevor might have touched. I check on Riley, he says he feels fine. I will be taking his temperature all day. I have to cry again. It scares me so much that Trevor has a common bug.
I bring Trevor water and shut the door of his room behind me leaving. I go straight to the sink and wash my hands. I hear Trevor vomit. I go back into his room and give him a towel. I don't want to stay with him. He might give it to me, I can't afford to be sick. All I can think about is how he brought a bug into the house, the first week we are back. How dangerous that bug is to Riley. My heart feels tight. I don't have much sympathy for Trevor at the moment. I am too scared of the bug. That makes me cry more, not wanting to help Trevor. I am afraid to open his door.
Hopefully the teacher will bring me balance, when she comes. I hate this fear.
Trevor woke for school this morning. He said he didn't feel well. His stomach was upset. Just Monday he had said some one threw up at school. I can't help being furious at him. He did not wash his hands well enough. He did not stay far enough away from the sick ones. I give him the vomit bowl and say he is not to leave his room all day. He is on quarantine. He could kill his brother.
I grab Clorox wipes from the kitchen and start wiping surfaces. The banister on the stairs, I am wiping every day. The tops of the computer keyboards get wiped. The game controllers in the game room get a wipe. Anything that Trevor might have touched. I check on Riley, he says he feels fine. I will be taking his temperature all day. I have to cry again. It scares me so much that Trevor has a common bug.
I bring Trevor water and shut the door of his room behind me leaving. I go straight to the sink and wash my hands. I hear Trevor vomit. I go back into his room and give him a towel. I don't want to stay with him. He might give it to me, I can't afford to be sick. All I can think about is how he brought a bug into the house, the first week we are back. How dangerous that bug is to Riley. My heart feels tight. I don't have much sympathy for Trevor at the moment. I am too scared of the bug. That makes me cry more, not wanting to help Trevor. I am afraid to open his door.
Hopefully the teacher will bring me balance, when she comes. I hate this fear.
Tuesday, March 2, 2010
Outside activities
Tonight is PTA. I am so excited to have something to do other than dwell on my own personal issues. I showed up at school last night thinking it was Tuesday only to notice that none of the cars that should be in the parking lot were there. It dawned on me I had the wrong night.
Tom finally kicked Riley off his computer skype account and out of my girlfriend's kitchen. He said Riley could call back after 7:00 and some home work. Riley's best friend would be home and anticipating the call. The two boys play wizards 101 on line while talking to each other. It truling is amazing that they can do that from seperate cities.
Riley has chosen his wellness class to study. The topic is STDs. I am looking forward to skipping out to PTA before Tom gets into a discussion on the topic. I had been happy the school was going to have that "discussion" with Riley. Now it is back in our hands again, since Riley will be missing all this school.
Tom finally kicked Riley off his computer skype account and out of my girlfriend's kitchen. He said Riley could call back after 7:00 and some home work. Riley's best friend would be home and anticipating the call. The two boys play wizards 101 on line while talking to each other. It truling is amazing that they can do that from seperate cities.
Riley has chosen his wellness class to study. The topic is STDs. I am looking forward to skipping out to PTA before Tom gets into a discussion on the topic. I had been happy the school was going to have that "discussion" with Riley. Now it is back in our hands again, since Riley will be missing all this school.
Boredom
Last night we pulled in to the house at about 4:30. Not bad. My front neighbor must have been watching for me because she came over within a half hour with a stack of hot dishes fresh from her kitchen, Chicken teriyaki, rice and salad fixings.
One of Trevor's friends dropped by. I let him come in and play. I can see that keeping Riley social will not be a problem. But it will be a problem in that Trevor has to do homework after school and I don't want to turn anyone away. Trevor's friend joins us for dinner. He is a big boy. We all love the chicken teriyaki. After everyone has seconds including Riley, there are no leftovers. The phone rings and it is the boy's parents. It is time to go home. It is a school night.
The boy leaves and the door bell rings again. The little neighbor boy across from us wants to play. How can I say no? I tell him to wash his hands and he can go upstairs to play. He is gleeful. Trevor was supposed to be grounded for the month of February for grades, but it is now March 1. We didn't do so well with the grounding with everything going on, but this young man had been turned away a few times during the month so Trevor would study.
I know that this boy has a house rule to be home at 7:00pm. Trevor can do his homework after 7:00. I find it interesting that no one has fought or raised voices all evening. Usually in the coming and goings and games there is some squabble. This night there are only happy voices.
Tom is vigilant on the dishes and cleaning. He has the alarm set for shot time. Baths and bedtime roll around. The problem with have our room next to the children these days, is they don't go right to sleep. They stay up and read. For Mommy and Daddy to have quality time, we have to crank up the TV. If we tried to out wait the children until they fell asleep, well, we would never have a life.
Tuesday is our first school day home. Trevor is off to school without a hitch. Riley and I have a leisurely breakfast. I tell him it is time to tackle the two weeks of laundry in the game room. It all needs to be put away. It turns out to be mostly the boys. Riley has no hanger in his closet still. I cant put the cloths away. I decide I just have to get it fixed and tell Riley not to do anything stupid, I am off to the store for parts.
Last night Riley climbed the kitchen stool trying to check out the candy on the fridge. Tom yelled at him. If he falls, it would not be a good thing. I tell Riley to get going on his home work. Its nice and safe sitting at the table, while I am out.
Once I get to the store Riley calls me. He has the hospital on speaker phone. They want to make sure we get Riley's bandages on his Pi cc changed Thursday. This involves bringing in a special nurse. Not just anyone can change the bandage since they might accidentally pull it out. The nurse on the phone does not want it to be forgotten. I guess it should have been done Monday and was missed. Thursday will be a long day anyway since we talk to the Doctor about what our plans going forward are going to be. Changing the dressing will kill some time waiting.
A friend calls, she doesn't like to give herself shots, or so she says. She would like to drop by and have Riley give her her vitamin shot. She has been reading about what a good job he does poking himself, and his parents for that matter. I love it. We have a great time. Riley gives her her vitamin shot without trouble. He even puts on surgical gloves and uses alcohol wipes, just as he has been taught.
I can see that these days at home are going to be long while all the other children are at school. The only children available to play are children not in pre school yet and those are some of the most dangerous for germs. We'll make it work though. Just like in the ward, we will wash hands and take temperatures of all young guests. I just have to remember.
Riley has found another alternative. His new Skype account. The mom who set it up has toddlers at home. He calls them on skype. The youngest is riveted. The computer is responding to him personally. Riley spends over an hour playing with the babies through the computer and listening to everything going on in their busy household. Occasionally an adult will acknowledge his presents in the room through the computer as they get on with house cleaning and remodeling projects. They don't mind since the toddlers are entertained and being kept busy out of the way.
I feel a little sad that Riley is now living vicariously through his skype account in someone Else's kitchen. But it keeps him happy being entertained and entertaining toddlers. Tomorrow the teacher comes and he can change gears for school.
I am going to tackle the closet and then the laundry. I would have Riley help me but he might get hurt. He can't even do upper body strenghtening now. The Picc line might role up in the artery with vigorous excersize. He is not even supposed to raise his heart rate too much.
Once the picc is out in a year or so, he can get back to normal excersize.
One of Trevor's friends dropped by. I let him come in and play. I can see that keeping Riley social will not be a problem. But it will be a problem in that Trevor has to do homework after school and I don't want to turn anyone away. Trevor's friend joins us for dinner. He is a big boy. We all love the chicken teriyaki. After everyone has seconds including Riley, there are no leftovers. The phone rings and it is the boy's parents. It is time to go home. It is a school night.
The boy leaves and the door bell rings again. The little neighbor boy across from us wants to play. How can I say no? I tell him to wash his hands and he can go upstairs to play. He is gleeful. Trevor was supposed to be grounded for the month of February for grades, but it is now March 1. We didn't do so well with the grounding with everything going on, but this young man had been turned away a few times during the month so Trevor would study.
I know that this boy has a house rule to be home at 7:00pm. Trevor can do his homework after 7:00. I find it interesting that no one has fought or raised voices all evening. Usually in the coming and goings and games there is some squabble. This night there are only happy voices.
Tom is vigilant on the dishes and cleaning. He has the alarm set for shot time. Baths and bedtime roll around. The problem with have our room next to the children these days, is they don't go right to sleep. They stay up and read. For Mommy and Daddy to have quality time, we have to crank up the TV. If we tried to out wait the children until they fell asleep, well, we would never have a life.
Tuesday is our first school day home. Trevor is off to school without a hitch. Riley and I have a leisurely breakfast. I tell him it is time to tackle the two weeks of laundry in the game room. It all needs to be put away. It turns out to be mostly the boys. Riley has no hanger in his closet still. I cant put the cloths away. I decide I just have to get it fixed and tell Riley not to do anything stupid, I am off to the store for parts.
Last night Riley climbed the kitchen stool trying to check out the candy on the fridge. Tom yelled at him. If he falls, it would not be a good thing. I tell Riley to get going on his home work. Its nice and safe sitting at the table, while I am out.
Once I get to the store Riley calls me. He has the hospital on speaker phone. They want to make sure we get Riley's bandages on his Pi cc changed Thursday. This involves bringing in a special nurse. Not just anyone can change the bandage since they might accidentally pull it out. The nurse on the phone does not want it to be forgotten. I guess it should have been done Monday and was missed. Thursday will be a long day anyway since we talk to the Doctor about what our plans going forward are going to be. Changing the dressing will kill some time waiting.
A friend calls, she doesn't like to give herself shots, or so she says. She would like to drop by and have Riley give her her vitamin shot. She has been reading about what a good job he does poking himself, and his parents for that matter. I love it. We have a great time. Riley gives her her vitamin shot without trouble. He even puts on surgical gloves and uses alcohol wipes, just as he has been taught.
I can see that these days at home are going to be long while all the other children are at school. The only children available to play are children not in pre school yet and those are some of the most dangerous for germs. We'll make it work though. Just like in the ward, we will wash hands and take temperatures of all young guests. I just have to remember.
Riley has found another alternative. His new Skype account. The mom who set it up has toddlers at home. He calls them on skype. The youngest is riveted. The computer is responding to him personally. Riley spends over an hour playing with the babies through the computer and listening to everything going on in their busy household. Occasionally an adult will acknowledge his presents in the room through the computer as they get on with house cleaning and remodeling projects. They don't mind since the toddlers are entertained and being kept busy out of the way.
I feel a little sad that Riley is now living vicariously through his skype account in someone Else's kitchen. But it keeps him happy being entertained and entertaining toddlers. Tomorrow the teacher comes and he can change gears for school.
I am going to tackle the closet and then the laundry. I would have Riley help me but he might get hurt. He can't even do upper body strenghtening now. The Picc line might role up in the artery with vigorous excersize. He is not even supposed to raise his heart rate too much.
Once the picc is out in a year or so, he can get back to normal excersize.
Monday, March 1, 2010
hospital time
We make our appointment at 10:30. Blood is drawn and the numbers come back shortly. Riley's platelets are 9 . He will receive platelets. The only problem is its monday and there are no bags of A positive in stock. Red Cross has to be called. We wait for the delivery. Its after 2:30 before Riley is hooked up. The transfusion is quick but we still will need to sit around for an hour to make sure there are no reactions. Just in time for rush hour traffic. I am told Mondays are the worst. Thursday should not be so bad.
Eight AM
Its Monday. Trevor got off to school with his usu all style. Everything is ready by the door, but then there is always something missing. Can't find his shoes, missing reading book, backpack is broken. Today it was "where are my shoes?". Now I wait until 8:00 to call the clinic. I need to know if Riley needs to take the Prednizone or wait like the cyclosporine until after blood draw. I was told the doctors want a base line before pills. He is to bring everything with him but not take the pills.
Because we left on the weekend, I am not even sure what time our appointment is today. So I am camped out by the phone waiting for the clinic to open so I can call. I let Riley sleep. He needs the sleep and he sleeps so soundly.
Yesterday was fantastic. Tom enjoyed talking to Bill, who, like him believes in being more informed than the doctor regarding the disease. They could talk the talk together. he is at work today since this is just a simple follow up and maybe platelets. I cant help praying we'll walk into the clinic and find his blood all cured, his numbers climbing, as if he just had a little flu.
I still have a hard time getting over the fact he looks fine.
Dinner last night was mac and cheese, made by Riley's Principal no less. She lives in our neighborhood and wanted to bring a meal over. I told her old fashioned mac and cheese would be lovely. The boys did love it. There was a fruit salad to go with it. It is so nice to not have to go to the store yet. I feel like a caveman entrenched in a blizzard. Its cozy by the fire with the storm raging outside, but eventually I will have to go get more food, face the real world. Do the normal things.
Riley has a Hawaiian pillow case on his bed. A friend made two pillow cases. One was plaid and one was Hawaiian print. We used the plaid at the hospital. It did cheer up the bedroom not to have the all white bedding at the hospital. His room is so clean now. I still have not brought his stuff back in. I need to tackle the game room with the piles of clothes and boxes of toys from Riley's room. My goal is tomorrow. We will be home and I can get it done. It needs a definite clean sweep approach.
I think I'll pick up some more plastic bins to get organized. I will need one for Riley's records anyway. The hospital statements have started to arrive in the mail. "We have billed your insurance company". Worth every penny, insurance. $2500 here, another for $6000. The prescription co pays have been $35 for one drug, for a one week supply.I think we will use up our flexible spending this year. So I am going to get a plastic bin to hold all the information in one place. Taxes might be tricky next year.
Speaking of taxes, I need to make a new appointment to get the taxes done on my dad's estate. I had to postpone during this crisis. But I have to get that estate closed. All I can say is it was a good thing I did all the distributions last summer so no one is still waiting for anything big. The lawyers said to wait, but my gut had told me to get it done. It has turned out to be a good call.
I'll ad it to my to do list for this week. I have everything we need now.
Its eight. Time to call the clinic for today's appointment.
Because we left on the weekend, I am not even sure what time our appointment is today. So I am camped out by the phone waiting for the clinic to open so I can call. I let Riley sleep. He needs the sleep and he sleeps so soundly.
Yesterday was fantastic. Tom enjoyed talking to Bill, who, like him believes in being more informed than the doctor regarding the disease. They could talk the talk together. he is at work today since this is just a simple follow up and maybe platelets. I cant help praying we'll walk into the clinic and find his blood all cured, his numbers climbing, as if he just had a little flu.
I still have a hard time getting over the fact he looks fine.
Dinner last night was mac and cheese, made by Riley's Principal no less. She lives in our neighborhood and wanted to bring a meal over. I told her old fashioned mac and cheese would be lovely. The boys did love it. There was a fruit salad to go with it. It is so nice to not have to go to the store yet. I feel like a caveman entrenched in a blizzard. Its cozy by the fire with the storm raging outside, but eventually I will have to go get more food, face the real world. Do the normal things.
Riley has a Hawaiian pillow case on his bed. A friend made two pillow cases. One was plaid and one was Hawaiian print. We used the plaid at the hospital. It did cheer up the bedroom not to have the all white bedding at the hospital. His room is so clean now. I still have not brought his stuff back in. I need to tackle the game room with the piles of clothes and boxes of toys from Riley's room. My goal is tomorrow. We will be home and I can get it done. It needs a definite clean sweep approach.
I think I'll pick up some more plastic bins to get organized. I will need one for Riley's records anyway. The hospital statements have started to arrive in the mail. "We have billed your insurance company". Worth every penny, insurance. $2500 here, another for $6000. The prescription co pays have been $35 for one drug, for a one week supply.I think we will use up our flexible spending this year. So I am going to get a plastic bin to hold all the information in one place. Taxes might be tricky next year.
Speaking of taxes, I need to make a new appointment to get the taxes done on my dad's estate. I had to postpone during this crisis. But I have to get that estate closed. All I can say is it was a good thing I did all the distributions last summer so no one is still waiting for anything big. The lawyers said to wait, but my gut had told me to get it done. It has turned out to be a good call.
I'll ad it to my to do list for this week. I have everything we need now.
Its eight. Time to call the clinic for today's appointment.
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