Saturday, February 20, 2010
ATG
Mornings I am finding are the worst. I wake up and realize I have to be happy for another whole day. God made us all unique and special. Now I wish we were all clones. Tom called from the beach. His Tee time is later in the morning. It is selfish of me, but I am glad to have Riley all to myself. Tom is torn, but I want him golfing. I can't stand being in the room with us both being miserable. He can't hide the lines of grief anymore than I can. It tears me appart. I cried on the phone. I wish I hadnt, because I don't wasnt him to bail on the tournament and come back. I want this weekend all to myself. Visitors are ok, because they leave after a while, and Riley likes the company to show off his new digs. But Tom would be underfoot and here durin
Friday, February 19, 2010
Busy Day
I thought last night I would sleep like a log after almost 24 hours in the hospital. But I could hear the cat' s claws on the floor. The dog got up at 2:00am. I got up with him to make sure he went out and not in the house. My mind skittered over everything we have learned the last two weeks. I get up at 5:00 am and do a load of laundry.
When I am in my car my mind does the same thing. It wanders, flitting from thought to thought. I am focused at the hospital. Away from the hospital it hits me. I was honked at at a green light this morning. I was just staring out the window when the light changed. Rush hour traffic is not condusive to day dreaming at the wheel.
I called my mom and asked her to pick up some pajama bottoms for Riley. Nothing funny or funky Riley is a solids or plaids kind of guy. Trevor would have been all about red hot chili peppers and monkeys. Riley also needs slippers, size 13 men's. I think he is the biggest kid on the ward this week. Mom couldn't believe that was the size and called me twice to confirm.
I made Trevor take a bath before school today. He used Tom's shaving cream, not to shave, but as a body wash. He said the girls loved to smell him after he uses it. Now I know where all the shaving cream has been going. Just what I need is for Trevor at 12 to get a girlfriend.
In eighth grade they have the sex talk. There is a whole spring segment dedicated to sex education in Wellness. Nothing is held back. Riley got sick right at the beginning. he is going to miss the whole class. I don't know if I am pleased he is missing it or worried I will have to tell him all about it myself. I am sure Tom will enjoy explaining it to the boys. He went over the meaning of every swear word they knew. "If you are going to use it you had better know what it means". Honestly, I don't think I have heard them swear since.
Today we were inundated by hospital staff and volunteers introducing themselves and their programs. Riley will be kept quite as busy as he wants to be. He qualifies for the make a wish foundation. So he will have to think hard as to what he wants. I said be careful or we will all end up going to play golf at St Andrews in Scotland. There are four categories; be someone for a day like a fireman, get something like a computer, meet someone famous, Tom suggested Mike Riley the Head coach for OSU, or take a trip (my personal favorite).
Riley slept this morning. He slept through rounds when the doctors came in to talk to us and tell us the plans. They told us the pick line would be put in shortly. Its a perminant open line from the arm directly to the heart. No more baths and it must be completely covered for showers. It will be really bad to get water in the line. The benefit is no more bad IVs all treatments and blood draws will be through this line as long as it is well maintained. We skiped morning school from 10:00 to 12:00 thinking they would be puting in the pick. The teacher came looking for us. We had to put her off.
They finally came to put the line in around 1:00 pm. I had to leave the room. I went down to the car to walk the dog. Mom was running errands and had not been over to pick the dog up. He was contentedly waiting. He truly is an easy dog. I would recommend the Cavalier breed to anyone who really doesn't want a dog, but has to have one. He is really a cat at heart.
After the line was in, Riley was high from the tranquilizers. Quite chearful about life. He headed down to the art room to put his name on a racing shirt. There is to be a fund raiser bike marathon for Anemia disease. Someone will wear a shirt bearing Riley's name.
An afternoon teacher found him there and offered to help him with math. It turns out Riley has been keeping up quite nicely. His school math teacher had e-mailed his assignments. It was a very satisfactory afternoon. I pray that they all will be this pleasant, but tomorrow Riley receives his first course of nasty drugs. they want to start in the morning so there is staff available in case there is a reaction. We don't want a reaction to occure in the middle of the night with no one around.
Mom and Big arrived with gifts, pajama bottoms and slippers size 13. They also brought a sandwich for me, very tasty. Big was sure Mom had gotten the shoe size wrong, but when Riley tried the slippers on, he says they were snug, but they'll stretch .
We now sit and watch Jackie Chan in Around the world in 80 days. Riley is loving it. He still needs a shower after three days. He promises after the movie he will get his arm wrapped and take a shower. They are tracking his urine output also, so he has been peeing into the jars and they need dumping. Might as well get used to it. Hospital life is on a different time schedule.
When I am in my car my mind does the same thing. It wanders, flitting from thought to thought. I am focused at the hospital. Away from the hospital it hits me. I was honked at at a green light this morning. I was just staring out the window when the light changed. Rush hour traffic is not condusive to day dreaming at the wheel.
I called my mom and asked her to pick up some pajama bottoms for Riley. Nothing funny or funky Riley is a solids or plaids kind of guy. Trevor would have been all about red hot chili peppers and monkeys. Riley also needs slippers, size 13 men's. I think he is the biggest kid on the ward this week. Mom couldn't believe that was the size and called me twice to confirm.
I made Trevor take a bath before school today. He used Tom's shaving cream, not to shave, but as a body wash. He said the girls loved to smell him after he uses it. Now I know where all the shaving cream has been going. Just what I need is for Trevor at 12 to get a girlfriend.
In eighth grade they have the sex talk. There is a whole spring segment dedicated to sex education in Wellness. Nothing is held back. Riley got sick right at the beginning. he is going to miss the whole class. I don't know if I am pleased he is missing it or worried I will have to tell him all about it myself. I am sure Tom will enjoy explaining it to the boys. He went over the meaning of every swear word they knew. "If you are going to use it you had better know what it means". Honestly, I don't think I have heard them swear since.
Today we were inundated by hospital staff and volunteers introducing themselves and their programs. Riley will be kept quite as busy as he wants to be. He qualifies for the make a wish foundation. So he will have to think hard as to what he wants. I said be careful or we will all end up going to play golf at St Andrews in Scotland. There are four categories; be someone for a day like a fireman, get something like a computer, meet someone famous, Tom suggested Mike Riley the Head coach for OSU, or take a trip (my personal favorite).
Riley slept this morning. He slept through rounds when the doctors came in to talk to us and tell us the plans. They told us the pick line would be put in shortly. Its a perminant open line from the arm directly to the heart. No more baths and it must be completely covered for showers. It will be really bad to get water in the line. The benefit is no more bad IVs all treatments and blood draws will be through this line as long as it is well maintained. We skiped morning school from 10:00 to 12:00 thinking they would be puting in the pick. The teacher came looking for us. We had to put her off.
They finally came to put the line in around 1:00 pm. I had to leave the room. I went down to the car to walk the dog. Mom was running errands and had not been over to pick the dog up. He was contentedly waiting. He truly is an easy dog. I would recommend the Cavalier breed to anyone who really doesn't want a dog, but has to have one. He is really a cat at heart.
After the line was in, Riley was high from the tranquilizers. Quite chearful about life. He headed down to the art room to put his name on a racing shirt. There is to be a fund raiser bike marathon for Anemia disease. Someone will wear a shirt bearing Riley's name.
An afternoon teacher found him there and offered to help him with math. It turns out Riley has been keeping up quite nicely. His school math teacher had e-mailed his assignments. It was a very satisfactory afternoon. I pray that they all will be this pleasant, but tomorrow Riley receives his first course of nasty drugs. they want to start in the morning so there is staff available in case there is a reaction. We don't want a reaction to occure in the middle of the night with no one around.
Mom and Big arrived with gifts, pajama bottoms and slippers size 13. They also brought a sandwich for me, very tasty. Big was sure Mom had gotten the shoe size wrong, but when Riley tried the slippers on, he says they were snug, but they'll stretch .
We now sit and watch Jackie Chan in Around the world in 80 days. Riley is loving it. He still needs a shower after three days. He promises after the movie he will get his arm wrapped and take a shower. They are tracking his urine output also, so he has been peeing into the jars and they need dumping. Might as well get used to it. Hospital life is on a different time schedule.
I am a snake oil sales man
After the doctor told us Trevor was not a match, my mind stopped remembering the statistics and articles Tom and I have been reading. We have to keep believing. We have to have faith. We must live in the moment. Don't think too hard about the future. don't think about the future at all. Well, maybe when it comes to school. We want to feel like there is a future. Positive thoughts.
I sent Tom off to play golf. He always functions better and is in a better mood after golf, refreshed and comfortable again. I love it when he plays. I miss our old club where he used to play all the time. He was much more relaxed and we played more together, not golf but just as a couple doing couples things. With this much stress, he definately needs to go golf . Besides I get to give my full attention to Riley and monopolize him. I don't have to share if I don't want to.
Trevor is going with his oldest and dearest friend for the weekend. He is excited. I was so distracted this morning I forgot to give him a kiss in the parking lot at school, I almost went back , but the bell had rung. He still accepts Kisses from me in public. Riley wont let me kiss him in public anymore.
Now I am off to the hospital. The doctor was great yesterday. Personable, clear, he made eye contact and answered our questions honestly. He looked like a scholar. He wasn't tall , but not short either. He had glasses on. His clothes were starched and pressed, very spiffy. We all looked like we had slept in our cloths, which we had.
He did say that umbilical cord stem cells are more forgiving when used. He said he would never use a 4 out of 6 matched protiens donor, but he would consider that using umbilical cord stem cells. With that said, he then said that we were not doing donors at this time and would not discuss that topic further. He moved on to the medicines and expectations of Riley's treatment. He was very efficient and concise. He talked to us for at least an hour. He also said he sees 1 to 3 cases like this a year. It is more of 1 in every one thousand have this disease. He is writing a paper on the subject and response to this treatement. But the subject pool is still pretty small, making Riley a very interesting case to add.
I was pleased when he said we were a record diagnosis to treatement. He said one reason was the fast response from the insurance company. That was thanks to Tom being who he is, knowing who to call to facilitate approvals. We knew right away what it probably was, so had not delayed or waited for the doctor to ask us to bring Trevor in. There was no delay on getting Trevor's test done. Once that was off the table, the choice protocol is to move directly to drugs.
So now I tell my boy these drugs that will make you feel aweful and sick will help cure you. I tell my husband, Riley is strong and we must be strong also, we can't fall apart, or dwell. I tell Trevor we will get through this, that I love him and I know I can count on him helping even if he didn't match his brother as a donor. I make everyone comfortable and happy for the moment. We live in the moment. I feel like a snake oil salesman of old, hawking a product that cures everything, a used car salesman. I just hope its not a lemon I'm selling.
I sent Tom off to play golf. He always functions better and is in a better mood after golf, refreshed and comfortable again. I love it when he plays. I miss our old club where he used to play all the time. He was much more relaxed and we played more together, not golf but just as a couple doing couples things. With this much stress, he definately needs to go golf . Besides I get to give my full attention to Riley and monopolize him. I don't have to share if I don't want to.
Trevor is going with his oldest and dearest friend for the weekend. He is excited. I was so distracted this morning I forgot to give him a kiss in the parking lot at school, I almost went back , but the bell had rung. He still accepts Kisses from me in public. Riley wont let me kiss him in public anymore.
Now I am off to the hospital. The doctor was great yesterday. Personable, clear, he made eye contact and answered our questions honestly. He looked like a scholar. He wasn't tall , but not short either. He had glasses on. His clothes were starched and pressed, very spiffy. We all looked like we had slept in our cloths, which we had.
He did say that umbilical cord stem cells are more forgiving when used. He said he would never use a 4 out of 6 matched protiens donor, but he would consider that using umbilical cord stem cells. With that said, he then said that we were not doing donors at this time and would not discuss that topic further. He moved on to the medicines and expectations of Riley's treatment. He was very efficient and concise. He talked to us for at least an hour. He also said he sees 1 to 3 cases like this a year. It is more of 1 in every one thousand have this disease. He is writing a paper on the subject and response to this treatement. But the subject pool is still pretty small, making Riley a very interesting case to add.
I was pleased when he said we were a record diagnosis to treatement. He said one reason was the fast response from the insurance company. That was thanks to Tom being who he is, knowing who to call to facilitate approvals. We knew right away what it probably was, so had not delayed or waited for the doctor to ask us to bring Trevor in. There was no delay on getting Trevor's test done. Once that was off the table, the choice protocol is to move directly to drugs.
So now I tell my boy these drugs that will make you feel aweful and sick will help cure you. I tell my husband, Riley is strong and we must be strong also, we can't fall apart, or dwell. I tell Trevor we will get through this, that I love him and I know I can count on him helping even if he didn't match his brother as a donor. I make everyone comfortable and happy for the moment. We live in the moment. I feel like a snake oil salesman of old, hawking a product that cures everything, a used car salesman. I just hope its not a lemon I'm selling.
Thursday, February 18, 2010
Trading places
Tom and I switched places tonight. Tom wanted to spend the night at the hospital with Riley. There was a traffic jamb on the freeway for him on the way in, so it took him an hour and a half to do the 35 minute drive. I made it home without mishap.
I feel somewhat relieved to have an action plan. I do have faith in modern medicine. Riley is not the first nor the last child to have this disease. The doctor felt this was a good course of action.
Having an action plan is huge. All that waiting was tearing us up inside.
Trevor was happy to see me when I came in, sort of. He was on the x- box playing one of those used games I got the other night from the Hollywood video close out sale. I made him get off the game and show me his school work.
The house looked wonderful. Another friend had dropped off dinner. It was beef stew in the crock pot, still warm and waiting for me. Its 7:00 pm and the first time home since 8: 30 pm last night.
Trevor got out his work for me to look through for school. I am trying to stay on top of that work. I think we both are sad and relieved that he is not a match. It is a scary thing for a 12 year old to be burdened with his brother's life. I have arranged for Trevor to go out of town with an old friend for the weekend, to distract him and give him some fun.
With this proceedure, I want to focus on Riley for a couple of days to see how he progresses.
It will be a slow process. It may take weeks to see any changes. I want Riley to get used to living at the hospital. Its like that first day of kindergarten when you drop your child off and the teachers want you to leave. Except this time they need you to stay. Think of it more like a parent teacher conference night.
We have been inundated with different specialist telling us details of what to expect and choices we have to make. Riley used to say he didn't want to go to school, now the poor boy is saying he is bored and when can he go back. It will be months. No crowds, no school. The doctors said no Friday nights at the movies, don't even take him to the store during the busy times. His weekend at the beach is canceled.
The window seat is not a bad bed. Tom said he found extra blankets for himself.
Tom is looking forward to being woken for blood tests at 3:00am and platelets at 5:00am so Riley will be ready for Pick insertion in the morning. Tom snuck in a bottle of wine for himself. So I guess they will be OK until morning.
I am going to tuck Trevor in. We have to be up for school at 6:00 am. I am taking in the letter from the doctor so we can get the tutor system set up. The hospital has a teacher to assist and coordinate with the schools so Riley doesn't fall too far behind hopefully. I had to ask about clarinette practicing. I was told it depends on how well he plays. It could be door open or door closed practices. We were told the story of another patient having a piano in the hall. Dornbeckers is amazing.
I feel somewhat relieved to have an action plan. I do have faith in modern medicine. Riley is not the first nor the last child to have this disease. The doctor felt this was a good course of action.
Having an action plan is huge. All that waiting was tearing us up inside.
Trevor was happy to see me when I came in, sort of. He was on the x- box playing one of those used games I got the other night from the Hollywood video close out sale. I made him get off the game and show me his school work.
The house looked wonderful. Another friend had dropped off dinner. It was beef stew in the crock pot, still warm and waiting for me. Its 7:00 pm and the first time home since 8: 30 pm last night.
Trevor got out his work for me to look through for school. I am trying to stay on top of that work. I think we both are sad and relieved that he is not a match. It is a scary thing for a 12 year old to be burdened with his brother's life. I have arranged for Trevor to go out of town with an old friend for the weekend, to distract him and give him some fun.
With this proceedure, I want to focus on Riley for a couple of days to see how he progresses.
It will be a slow process. It may take weeks to see any changes. I want Riley to get used to living at the hospital. Its like that first day of kindergarten when you drop your child off and the teachers want you to leave. Except this time they need you to stay. Think of it more like a parent teacher conference night.
We have been inundated with different specialist telling us details of what to expect and choices we have to make. Riley used to say he didn't want to go to school, now the poor boy is saying he is bored and when can he go back. It will be months. No crowds, no school. The doctors said no Friday nights at the movies, don't even take him to the store during the busy times. His weekend at the beach is canceled.
The window seat is not a bad bed. Tom said he found extra blankets for himself.
Tom is looking forward to being woken for blood tests at 3:00am and platelets at 5:00am so Riley will be ready for Pick insertion in the morning. Tom snuck in a bottle of wine for himself. So I guess they will be OK until morning.
I am going to tuck Trevor in. We have to be up for school at 6:00 am. I am taking in the letter from the doctor so we can get the tutor system set up. The hospital has a teacher to assist and coordinate with the schools so Riley doesn't fall too far behind hopefully. I had to ask about clarinette practicing. I was told it depends on how well he plays. It could be door open or door closed practices. We were told the story of another patient having a piano in the hall. Dornbeckers is amazing.
Visitor Rules
Well, now that we are living at the hospital, we were introduced to our neighbors. One boy is also 14 and has been here a while. Our CNA thought it a good idea for the boys to meet. Hopefully they will hit it off.
No flowers or plants allowed. No sick visitors, even cold sores are not allowed. children under the age of 12 visiting hours end at 8.
Riley has a computer and a DVD player in his room. Movies play round the clock. I am going to bring his books tomorrow. School is from 10:00 to 12:00 am
They make it a pleasant as can be expected under the circumstances
No flowers or plants allowed. No sick visitors, even cold sores are not allowed. children under the age of 12 visiting hours end at 8.
Riley has a computer and a DVD player in his room. Movies play round the clock. I am going to bring his books tomorrow. School is from 10:00 to 12:00 am
They make it a pleasant as can be expected under the circumstances
Trevor is Not a match
We start a drug protocol now of predizone cyclosporine and ATG. A line will be put in Riley's arm that runs up his arm into his heart. That way he will not have to be poked with needles, especially with his bleeding and discomfort with the needle insertions. No baths for a very long time. No hot tubs or swimming either.
We should know in about three months if this process is going to work or if we must look to none related donors. The problem is since we didn't get the luxury of a sibling match, all other matches will be imperfect. The protocol we can start immediately. Waiting for a search costs money and time. We were told for sibling matches it is a fairly quick process, as they know in the lab within a few protiens whether the sibling is going to match or not. If they test a none specific donor there are many more criteria that have to be checked and cross checked. Its time consuming and expensive. So the order is sibling,then drugs, then donor search. Even cousins are unlikely to match well.
Riley is getting into calling down to the hopital kitchen and ordering his meals. He ordered beef tenderloin for dinner tonight. He had French toast with bacon for breakfast, mmmmmm. I have been having bags of powder with water added,hmm.
Side effects are potentially rash, fever, nausea, vomiting. He may also eat up platelets for the duration of the first course, meaning more transfusions. His bones will ache painfully in about 3 weeks, which is why the addition of the steriods to help overcome that pain. The idea is to reboot his system so the cyclosporine is an immune suppressant to help get the system up and running, to stop the body from fighting itself. He will be on it for potentially six months to a year or more. ATG he gets in the hospital for eight days. Then he is tested and observed for a while and then maybe treated again. Then the other drugs have to be wheened off slowly.
The cause was idiopathic, meaning unknown cause. He has no reason for his condition. It just is.
They found nothing conclusive. So, we move on to hoping the meds make him better.
Visitors are welcome if they are in good health. Riley will be at Dornbeckers until March this time.
We should know in about three months if this process is going to work or if we must look to none related donors. The problem is since we didn't get the luxury of a sibling match, all other matches will be imperfect. The protocol we can start immediately. Waiting for a search costs money and time. We were told for sibling matches it is a fairly quick process, as they know in the lab within a few protiens whether the sibling is going to match or not. If they test a none specific donor there are many more criteria that have to be checked and cross checked. Its time consuming and expensive. So the order is sibling,then drugs, then donor search. Even cousins are unlikely to match well.
Riley is getting into calling down to the hopital kitchen and ordering his meals. He ordered beef tenderloin for dinner tonight. He had French toast with bacon for breakfast, mmmmmm. I have been having bags of powder with water added,hmm.
Side effects are potentially rash, fever, nausea, vomiting. He may also eat up platelets for the duration of the first course, meaning more transfusions. His bones will ache painfully in about 3 weeks, which is why the addition of the steriods to help overcome that pain. The idea is to reboot his system so the cyclosporine is an immune suppressant to help get the system up and running, to stop the body from fighting itself. He will be on it for potentially six months to a year or more. ATG he gets in the hospital for eight days. Then he is tested and observed for a while and then maybe treated again. Then the other drugs have to be wheened off slowly.
The cause was idiopathic, meaning unknown cause. He has no reason for his condition. It just is.
They found nothing conclusive. So, we move on to hoping the meds make him better.
Visitors are welcome if they are in good health. Riley will be at Dornbeckers until March this time.
Eventful night
We spent the night in the hospital. Riley started to complain of a headache, then his ears felt plugged and his throat got soar. We took his temperature for about 3 hours and talked to the on call doctor 3 times, trying to decide if we should bring him in. A temperature of 100.4 is considered dangerous, because they have to catch infections early since Riley's body cant do anything about them himself. He was up and down all evening. From 99.6 up to 100.2 then 100.3 then 100.1 then 99.9, but slowly progressing higher. It hit 100.5 and then 100.6 twice, we made the decision to take him to the ER at Dornbeckers. We were told not to give him Tylonol as it will mask any fever. What we really want to do is give him Tylonol and everyone get a good nights sleep.
Tom stays home with Trevor so Trevor can get off to school in the morning. Trevor is a sound sleeper. We relied on Riley to get the boys to school when I was in Tucson, and Tom would go to work before the boys got up. He calls my mom to tell her we are headed to the hospital. She lives just over the hill from it. I call her on the road and she already knows. she is planning to meet us there.
It is a hard decision to take him in. We were warned that if we ever brought him in it would involve a battery of tests and an automatic stay overnight for probably several days. If we take it seriously enough to bring him in , they respond in kind at take it seriously in return. Because we did not catch this early in the first place, we need to be over cautious now. I hate being a paranoid parent
The ride up was stressful. I want to speed but wonder what to do if a police officer flags me. I think about calling 911 and letting them know that if I am being followed they can give me the ticket at the ER. Riley says his head hurts and his throat is getting worse. The trip seems longer than usual even without traffic. Its 9:00 pm.
There is valet parking at the ER, I love that. They have a private room for children to wait. We get in quickly though, since they knew we were coming. We only have to wait while they sanitize the room for us. We can smell the cleaner in the air as we go in. It has a glass sliding wall like in the show House that we like to watch. They keep the door closed at first to isolate us.
Two nurses come in to assist with the IV and getting blood samples. Riley asks for lidacaine. Its a shot that numbs the area where the IV will be inserted. At first they dont want to do it saying that it causes the veins to retreat. Riley's hands are cold so they wrap the one they want to put the line in with a warming pad. They hope to raise the vein. They give Riley the lidacaine. then they can't find the vein. He bleeds. They pick another spot without lidacaine. He is in pain as they fish around under the skin looking for a vein with the needle. His leg is lifted off the bed two feet in the air shaking as he tells them it hurts. He also tells them they are not very good that he has had better. They end up calling a doctor in and he puts the line in up in the bend in the arm quickly, right where Riley requested it in the first place. He had not wanted it in his hand.
He is also hungry. I give him one of my diet bars. Its high protein. Thank goodness for that diet. I always have food on me now.It consoles him for the moment
The nurses had told Riley that they couldn't do the arm IV because of the bruises there from the other lines he had before. The doctor got it done though. They take his temperature, 99.9. I am beginning to feel like it was an unnessessary trip we are now committed to. Especially when one doctor looks in his ears because he says they feel plugged. She can't see anything because of the wax in his ears. She takes a long cutip and cleans out both ears. Low and behold they don't feel plugged anymore. She checks his throat, but doesn't see any inflamation. Thats all good but we are committed. the low grade fever may be something.
Tom stays home with Trevor so Trevor can get off to school in the morning. Trevor is a sound sleeper. We relied on Riley to get the boys to school when I was in Tucson, and Tom would go to work before the boys got up. He calls my mom to tell her we are headed to the hospital. She lives just over the hill from it. I call her on the road and she already knows. she is planning to meet us there.
It is a hard decision to take him in. We were warned that if we ever brought him in it would involve a battery of tests and an automatic stay overnight for probably several days. If we take it seriously enough to bring him in , they respond in kind at take it seriously in return. Because we did not catch this early in the first place, we need to be over cautious now. I hate being a paranoid parent
The ride up was stressful. I want to speed but wonder what to do if a police officer flags me. I think about calling 911 and letting them know that if I am being followed they can give me the ticket at the ER. Riley says his head hurts and his throat is getting worse. The trip seems longer than usual even without traffic. Its 9:00 pm.
There is valet parking at the ER, I love that. They have a private room for children to wait. We get in quickly though, since they knew we were coming. We only have to wait while they sanitize the room for us. We can smell the cleaner in the air as we go in. It has a glass sliding wall like in the show House that we like to watch. They keep the door closed at first to isolate us.
Two nurses come in to assist with the IV and getting blood samples. Riley asks for lidacaine. Its a shot that numbs the area where the IV will be inserted. At first they dont want to do it saying that it causes the veins to retreat. Riley's hands are cold so they wrap the one they want to put the line in with a warming pad. They hope to raise the vein. They give Riley the lidacaine. then they can't find the vein. He bleeds. They pick another spot without lidacaine. He is in pain as they fish around under the skin looking for a vein with the needle. His leg is lifted off the bed two feet in the air shaking as he tells them it hurts. He also tells them they are not very good that he has had better. They end up calling a doctor in and he puts the line in up in the bend in the arm quickly, right where Riley requested it in the first place. He had not wanted it in his hand.
He is also hungry. I give him one of my diet bars. Its high protein. Thank goodness for that diet. I always have food on me now.It consoles him for the moment
The nurses had told Riley that they couldn't do the arm IV because of the bruises there from the other lines he had before. The doctor got it done though. They take his temperature, 99.9. I am beginning to feel like it was an unnessessary trip we are now committed to. Especially when one doctor looks in his ears because he says they feel plugged. She can't see anything because of the wax in his ears. She takes a long cutip and cleans out both ears. Low and behold they don't feel plugged anymore. She checks his throat, but doesn't see any inflamation. Thats all good but we are committed. the low grade fever may be something.
They start him on an antibiotic. This particular antibiotic will be given every eight hours. We are wheeled up to the 10th floor to his room. Its after midnight, the ward is quiet and all the doors are shut. He gets the last available room. I get a quick tour, where to find more blankets and where the coffee is in the morning. They give us blankets for the window seat. Mom makes the bed and asks if I want her to stay. Not this time, its our first visit overnight.
I want to be here for Riley. I had asked him earlier and he said he wanted me to stay. I told mom this is just the beginning, there would be plenty of other opportunities for her to spend the night. If Riley gets bone marrow, because of the suppressed immunity, he could be in the hospital for months. I was glad for her company in the ER though. Especially with groucho marks in the bed offending the nurses for not being able to get his IV going without pain.
I call Tom to tell him goodnight. Both our voices break. Its late. We will see him tomorrow. Its our big day. If only we can get through it without another crisis.
Subscribe to:
Posts (Atom)
