Still on the upswing. When I got here to the hospital Jim was pretty ticked. He got a feeding tube today to better regulate his medicine. Our boy is back because he is fed up. I don't blame him and that is perfectly ok as long as he keeps fighting. He has 12 more RSV treatments to go. He gets 3 a day so he should be done on Saturday. After that they will wean him from the ventilator. So, I am hoping if all goes well he can be back up to the bonemarrow floor next week.
The treatments cause him much anxiety so he lays there watching the clock. Poor Guy. They can give him meds to help with the anxiety, but they won't sedate him. He has started writing his needs on a pad of paper. I am saving the sheets to show him later because it looks like something a second grader has written. Pretty cute. His sister is staying with him tonight and my Dad will go in the morning so he doesn't have to be alone. He doesn't like me to go and boy does he lay on the guilt trip. My only saving grace is that he most likely will forget everything that has happened in the ICU. I hope he does anyway.
One thing that makes him happy is hearing his kids talk to him on the speaker phone. I keep telling him to keep his eye on the prize. He listens to their voices intently and beams.
Today I AM THANKFUL FOR people who sit with my husband so I can sleep, friends who deliver groceries to my kids, friends who bring food and friends that show up at my house who clean and do laundry. I am in awe. Boy do I owe alot of service when this thing is all through.
Tuesday, March 23, 2010
Monday, March 22, 2010
Day #11 Post Transplant (20 days in hospital) Possible Engraftment
Last night after much personal debate, I decided after not being home since Tuesday night that I would go home and see my kids and get some sleep in a bed. I felt like we were on a stable course and he was more aware. Jim's sister sat with him in between treatments from 9 Pm - 2:00 Am and then he went to treatment and my Mom came and sat with him after his treatment from 5:00 Am to 10:00 AM. That eased my mind so much because I just don't want him to be alone and afraid. He likes to have someone there to hold his hand. It kills me he has to be alone during his treatments, but that I can't control but I can control the rest of the time.
Today we are definitely on the upswing. The doctors think he has engrafted which means the new marrow is making cells. That is pretty early. Normally engraftment does not happen until day 14 - 20 and they usually will suppress that to prevent graft vs. host disease, but at this point it is good he is engrafting because that will give him some immunity to fight this RSV off. He still has a breathing tube
and has some ventilator support. He actually stood and walked to the nurses station today. Doesn't sound like much but is HUGE.
Tonight, my brother is going to sit with him between treatments and then our friend Jimmy is going to take the morning shift. I am so glad he is more aware and that there are people willing to sit with him so I can actually sleep. It is also good for my kids to see me come home at night and see them off in the morning. I know these last 5 days have been very hard on them. I am sure when we pulled them out of school on Thursday to see him, they couldn't help but think it might be goodbye. They are amazing kids though. Last night when I got home at 8:00 (now remember I hadn't been home since Tuesday}, they had spent the day cleaning and doing laundry so I wouldn't have to come home to it. I walked in the door at 8:00 PM and they were in the kitchen together making French Toast. Neighbors had invited them to dinner so I guess this was a snack. Anyway, I came home to see them and take care of them but instead I was tucked into bed, Sarah rubbed my back and Nate slept with me. They have had much help from family and friends but it was good to see them pulling together to help.
Today I AM THANKFUL FOR Mom and Nedra who sat here with Jim last night so I could get some sleep, and for my kids who cleaned up so I wouldn't be stressed when I got home. Also, I am thankful for neighbors who thought to call my kids on a Sunday to come over for a "pity party" and some good food.
Just so you know I wasn't being rude when I called it a pity party. When Jim, Camille, and Andee all had cancer we would get together with our families and some friends and have "pity parties." There wasn't any pitying going on just alot of inappropriate cancer jokes, alot of laughing and alot of love. I miss those pity parties. Can't wait for another one.
Today we are definitely on the upswing. The doctors think he has engrafted which means the new marrow is making cells. That is pretty early. Normally engraftment does not happen until day 14 - 20 and they usually will suppress that to prevent graft vs. host disease, but at this point it is good he is engrafting because that will give him some immunity to fight this RSV off. He still has a breathing tube
and has some ventilator support. He actually stood and walked to the nurses station today. Doesn't sound like much but is HUGE.
Tonight, my brother is going to sit with him between treatments and then our friend Jimmy is going to take the morning shift. I am so glad he is more aware and that there are people willing to sit with him so I can actually sleep. It is also good for my kids to see me come home at night and see them off in the morning. I know these last 5 days have been very hard on them. I am sure when we pulled them out of school on Thursday to see him, they couldn't help but think it might be goodbye. They are amazing kids though. Last night when I got home at 8:00 (now remember I hadn't been home since Tuesday}, they had spent the day cleaning and doing laundry so I wouldn't have to come home to it. I walked in the door at 8:00 PM and they were in the kitchen together making French Toast. Neighbors had invited them to dinner so I guess this was a snack. Anyway, I came home to see them and take care of them but instead I was tucked into bed, Sarah rubbed my back and Nate slept with me. They have had much help from family and friends but it was good to see them pulling together to help.
Today I AM THANKFUL FOR Mom and Nedra who sat here with Jim last night so I could get some sleep, and for my kids who cleaned up so I wouldn't be stressed when I got home. Also, I am thankful for neighbors who thought to call my kids on a Sunday to come over for a "pity party" and some good food.
Just so you know I wasn't being rude when I called it a pity party. When Jim, Camille, and Andee all had cancer we would get together with our families and some friends and have "pity parties." There wasn't any pitying going on just alot of inappropriate cancer jokes, alot of laughing and alot of love. I miss those pity parties. Can't wait for another one.
Sunday, March 21, 2010
Day #10 Post transplant
Today has been a fairly good day. I was able to get a couple of hours of solid sleep so I feel much better. I have slept here for 4 nights in a row and they kick me out for 3 hours each time he gets a treatment, so I am trying to decide what to do tonight. I don't feel like I can totally leave him alone because he still gets a little confused.
Today was about the same as yesterday. He is still on the ventilator but gets removed from it while he gets his RSV treatment. Which is actually terrible because he basically has to breath through a straw for 2 hours with no ventilation support. They can't give the treatment through the ventilator but he needs both the ventilator and the treatment. So, they compromise. So during the treatment his respirations, blood pressure, heart rate all go through the roof. On top of that no one can stay in the room so he is alone and anxious during that time. It wears him out. He is however lucid today and stood at the bedside twice. He can't speak with the breathing tube so we are having to come up with all sorts of sign language. Earlier he was getting a treatment and I looked at him through the window. He saw me and I guess signed I love You. I didn't know that one so I thought he was giving me the hangloose sign. (funny). Any chance he gets he holds on to me with a death grip. It is pretty cute. I guess he still likes me.
Anyway, I feel like we are making subtle progress. I guess as long as we are not moving backwards, I am good.
Today I AM THANKFUL for the sweet tender hugs and death grips he has on me.
Today was about the same as yesterday. He is still on the ventilator but gets removed from it while he gets his RSV treatment. Which is actually terrible because he basically has to breath through a straw for 2 hours with no ventilation support. They can't give the treatment through the ventilator but he needs both the ventilator and the treatment. So, they compromise. So during the treatment his respirations, blood pressure, heart rate all go through the roof. On top of that no one can stay in the room so he is alone and anxious during that time. It wears him out. He is however lucid today and stood at the bedside twice. He can't speak with the breathing tube so we are having to come up with all sorts of sign language. Earlier he was getting a treatment and I looked at him through the window. He saw me and I guess signed I love You. I didn't know that one so I thought he was giving me the hangloose sign. (funny). Any chance he gets he holds on to me with a death grip. It is pretty cute. I guess he still likes me.
Anyway, I feel like we are making subtle progress. I guess as long as we are not moving backwards, I am good.
Today I AM THANKFUL for the sweet tender hugs and death grips he has on me.
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