Day 2 of antibody has just ended! Today has been a very long day for all of us! Jack did well last night and had low fevers on and off, but nothing too shocking. He woke up early this AM and we started getting everything ready to start the 2nd day of antibody. We started earlier today, around noon, so we could get done earlier in the night than we did the day before. He broke out in a rash a few times during the day, but his coughing has slowed down a lot so that’s good. They decided to come and do a breathing treatment on his this morning and that did not go well at all. Right when the respiratory Dr walked in I noticed she had a mask in her hand…Jack HATES oxygen masks. He had an awful experience with one when they put him under for his first CT before he was diagnosed and he will forever be scared of them. I asked her if she planned on using the mask and she said, “Well, how do you supposed I give him the breathing treatment without it?” I said, “Not sure, but you will have to figure it out.”
Our wonderful nurse, Tara, said that she should just do a blow by with the albuterol and see if that worked. Jack was still pretty upset about the whole thing and kept yelling while it was going on but I am sure it would have been much worse if he had a mask on him. I had a mini break down because my heart brakes when I watch him go through so much awful stuff. The breathing treatment didn’t do anything to help his cough, it in fact made it worse but he has gotten better on his own throughout the day.
This afternoon he fought a high fever of over 104 F, but now that the antibody has finished for the night we are hoping that it doesn’t come back again. Jack is getting pretty tired of being here, but thankfully he is halfway done with this cycle. When he gets up in the morning, he will only have 2 more nights that we have to stay here and then we get to go home and be “normal” for a few weeks before we check in again at the end of March.
Let’s hope that tomorrow goes better than today and that his fevers don’t get as high. Dr Eshun saw Jack this afternoon and thinks that it’s a good sign that his body is reacting because it is working. So although he has had clear scans already, we just have to keep in mind that this treatment is going to help his scans stay clear. We can’t give up on it yet…even though I just want to scoop him up and go home. He has come so far.
Zac just left to head home before going to work and we are all packed up here because we have to change rooms tonight. Not something we really want to do, but we don’t have much of a choice!