The first few days were a bit tough- not the really HARD, but just tough in terms of getting used to being stuck in a hospital and realizing you have extremely limited freedom around where you go, what you do, how you sleep, and what you eat. They put an NG tube in during the surgery to put his hickman catheter in so he would be asleep, and it was causing him some discomfort at first. He does not need it now because he can eat well now, but once mucositis sets in (a side effect of the chemo) he will not be able to eat comfortably and they wanted to place it in preparation for that. Unfortunately, the NG tube the surgical team used was a very small and very long one and everyone commented "that's not the normal one we use." Finally around day 4, he was used to it, but he was not wanting to take his medicine, so the nurse suggested we try using it to give him his medicine- thinking we could show him the benefit of the NG tube. Another nurse told her to crush the pill up this time instead of doing the liquid, which is normally fine, but there is a VERY tiny chance that this method will clog the tube. Well....it clogged the tube. So they tried multiple things to unclog it- soda (actually!), drain buster (which I was calling pedatric draino), nothing worked. Finally they determined the only thing to do was to pull it out because it was unusable. They will likely put it back in, but not for a few more days.
There had been several sad moments in the first few days, but after Jeremy and the girls came on Thursday and ZiLong got to spend a little time with each sister, he was practically glowing! He was so happy to see them and it definitely showed in a major turnaround in how he felt yesterday. He is still pretty perky today even though Jeremy, Maddie and Violet went to Auburn to celebrate Jeremy's mom's 85th birthday so he does not get to see them today, but it was absolutely a huge boon to how he is feeling!
He has talked to a few friends on the phone and been enjoying super spicy cup noodles over hospital food! Violet hung out with him in the morning yesterday and Maddie in the afternoon. Violet went with me in the afternoon to the Ronald McDonald house to go do laundry- and destroyed me in Monopoly!
They have a few baseline labs but daily labs will start tomorrow or Monday. As of now this is where we stand:
WBC: 6.3
ANC:3.58
Hgb: 11.6 (plus transfusion)
Platelets: 191
These numbers will all bottom out before engraftment occurs. Today was the last day of chemotherapy and so far the anti-nausea meds have kept his nausea in check. We anticipate the nausea will increase and they will start administering them on a schedule rather than on an as needed basis.
If anyone would like to send cards, here is an address:
Zi Long George (Room # 5311)
c/o Marisa Schweber-Koren
Medical Social Services, T2
UCSF Benioff Children's Hospital Oakland
747 52nd Street
Oakland, CA 94609
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