Day -13: Like yesterday, today was full of activity. At times, I felt like our hospital room was a revolving door. Over the past two days, we have had visits from all sorts of doctors, nurses, a speech therapist, a physical therapist, an occupational therapist, a social worker, doctors who want to sign us up for research studies, a Chaplin, a dietitian, and the list goes on and on. Its been a bit frustrating because poor Ryan cant sleep when he wants to, and I am hoping that once we have been here for a while, the initial welcome visits will die down. Today we had to keep him awake long enough in the morning to have him checked by the doctors during rounds, take his morning meds, play a little, and have his vitals taken several times. Then, I was able to put him down for a long nap, and I went home for a visit with Brendan and Maggie while Bret stayed with Ryan. :) Brendan and Maggie were so happy to see me, and I was equally happy. We played a little, ate lunch together, and then baked a cake. I was sad that my visit was super short, but it was so worth it :) I came back to the hospital just in time for Ryan to get his pre-meds and then he was given his second dose of Campath (a shot in his leg- he wasnt very happy :( ) Bret then went home to be with Brendan and Maggie and to get some rest before he works on Thursday and Friday. Ryan had a fever all day today which is just a side effect of the Campath. It wasnt too high, but he still had to take a couple doses of Tylenol. He played a little, but the poor guy mostly wanted to sleep. His diaper rash is getting better, and wound care has set up a different treatment plan that we started tonight. We are hoping that this small issue continues to get better before his counts start dropping. If it doesnt get better, it will get much much worse when there is nothing in his body to fight it. Ryan is still on several different antibiotics just in case he currently has or develops an infection. They switched to a different antibiotic today, and unfortunately, he had a strange reaction to it this evening. He started to run a low fever after not having one for about an hour, and then he face got really red, but it was a weird red. The redness covered every part of his face except for his cheeks. It was so weird. His cheeks were pale and cold while the rest of his face was hot and red. He wasnt upset about it or anything; he even smiled for the picture I took of him to show Bret. The redness and hotness lasted for about an hour, and then it just went away. It was really strange. He will get another dose of the antibiotic at midnight, and this time he will get it at a slower rate in the hopes that he wont get the red face again. If he does, they will just give him Tylenol and benadryl before he gets it again. So far everything is going as planned, and there havent been many surprises (the big one was the red face thing). These first couple of days and weeks are kind of the calm before the storm. Ryan wont really start to feel the effects of all of these meds until a week or so after the transplant. So, I am going to make the most of my time with my somewhat happy baby. Keep those prayers coming!
Posted on: Thu, 08 Jan 2015 03:29:12 +0000
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