Aaaaaah Okay, a good night's sleep does so much good for a person. I also got a shower this morning and was able to put some laundry in. I know doesn't seem like much, but yesterday was so nonstop it is nice to have a breather. He already got one of his pokes out of the way today with a blood draw this morning and the child life specialist is going to try to help us distract him and is asking for some numbing cream for his neupogen shot later today. He is so patient with everything else that goes on but pokies are just not his cup of tea.
They will check his eyes for fungal today, and his heart but both of those procedures shouldn't be too bad. He got a rash right after the CT scan yesterday so they are trying to figure out which med caused it, we are thinking it was probably the contrast which means he may be allergic to shellfish so if he has to get another CT done we'll have to watch it close.
He still has a fever so doesn't feel much like playing or anything which is actually easier when you are stuck in a hospital room, but also means that whatever is ailing him is still ailing. I don't have a copy of his counts yet but the resident said they are up a little so that is good news.
And we just found out the very bestest news when the nurse pulled off his dressing on his port removal site we discovered that they closed the wound after all and used steri strips on it which makes it totally fuss free. We won't be having to pack the wound and change the dressing twice a day after all. We are SO SO excited about that.
Dr Wright, his oncologist also popped in to say hi even though she's not treating inpatients this week, she just wanted to check in with us. She said about his chemo, when he finally does recover she is going to start with one pill a week and then work our way up from there instead of adjusting down like a normal ALL kid does in maintenance. She also said that when his infection is clear we will do a picc line which is a tube sticking out, probably from his arm, instead of his port for a while, just to make sure all of the infection is clear before they put a new port in. That was awesome news cause we are already missing his port big time. A picc line is kind of a pain cause they can't submerge it in water, and it involves dressing changes but it is better than stupid IV. One of the residents when we first got here said the attending that night thought he probably didn't even need to put in another central line since he was in maintenance and momma bear was ready to put up a big fight on that one. There was no way we were going to let them do an IV at least once a month for the next 2 years. So anyway it was a relief to talk to her. We love Dr. Wright, she has been the perfect oncologist for Ty.
Sorry that was so long, I don't remember details very well so I like to have a record of what is going on when there is so much. Thanks for all of the concern and prayers. We are doing okay, watching Pink Panther and snuggling when we can.
The Pink Panther is pretty funny :) I hope you can laugh away some of your troubles
ReplyDeleteYay for closing the port! When you mentioned the dressing changes before, I groaned for you. I love that they're starting low on the chemo and working up...hopefully he will have better response and fewer setbacks that way. Glad things are looking up!
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