Wow, That Sucked! I wish I had more positive things to post about our first night of chemo but there really isn't any except that it is over.. and this was supposed to be the easier one. We got admitted at 10:30am and didn't start the chemo until after 9:00pm. I thought perhaps this wouldn't be so bad as maybe he would sleep through most of it but boy was I wrong. I'm about to get graphic so if you have a weak stomach you may not want to read further. However this blog serves as my historical record and also for future Hurler BMT parents and so I need to put it all out there.
As I was saying, we started the Campath soon after 9:00 and within 15 minutes he had awoken from his sleep so I put him on my lap. Within maybe 10 more minutes, just as the nurse left, he started vomiting. So I called her in and she cleaned him up and I cleaned myself up. We left him in his bed as he had fallen back asleep. He again was restless after another 10 or so minutes and I tried to soothe him but again he vomited. After another round of clean up he wasn't fallen back asleep so I held him in the chair again. The nurse asked if I wanted any anti-nausea medication and I said lets just give it a few minutes and see if he falls back asleep. She left and almost immediatly he acted like he was going to get sick again but he didn't have anything left in him. So we gave him the anti-nausea and he finally was able to fall asleep. Near the end of the 2 hr infusion, just when I thought we were in the clear, my lap became very wet. So we had stopped it from coming out the top but it now moved to the bottom. Again a ring to the nurse and I had to break into the "Comfy" clothes that my college girlfriends had sent all of us and were waiting in our room when we arrived. Then the shakes started.. and the fever. I really wasn't prepared for the shakes which lasted over an hour. This was probably the hardest part as they wouldn't stop no matter how much I tried to hold him close and I know that how tight shaking makes your body. At about 1:00am those finally stopped and again we took position in the recliner. At about 2:30am I put him back in his bed and got some sleep myself, about 3 hrs worth. During that time they did give him more Tylenol and an Antibiotic which the Drs. said would most likely be needed since kiddos almost always have a fever.
Today we have ERT on top of the Campath and a sleep study tonight. It will be an interesting mix.
In other news - Paul wasn't feeling well yesterday so he went back to the hotel at around 2:00 so he missed the whole thing. Which is good since he doesn't do well with the gorey stuff and I will need a reprive today to do the laundry and make get a good nap in. We also got a call about noon yesterday saying we got into the RMH. What timing! So Paul is moving our stuff there this morning. Fortunately we have a bit less to move and more room in the car since Peyton is in Michigan and we are here.
By the way T=0 is the actual transplant day (July 24th) and we count down so as of yesterday we had 21 days to BMT day and then we start count up afterward.