Day +7

 

Day +7 numbers:

WBC: 1.7 (down)

ANC: 450

Hgb: 7.2

Platelets: 51

Yesterday at day +6 Zilong had the first sore appear in his mouth, and he has probably 4-5 more today.  He said so far they are not painful and he is still able to eat well, so hopefully he can keep doing that. I will be surprised if they do not become much more painful, but right now we are all just blissfully unaware. He is really worn out from his counts going down though, and while he does perk up, he is definitely getting the dark rings under his eyes and does not have the same energy he normally does.  While he was doing regular transfusions, the goal as to keep his hemoglobin (Hgb) between 9.5 and 10.5, but he always felt much better with higher Hgb, so his was often around 10.5-11.5 coming into transfusion.  In the hospital for transplant, they will not transfuse until he is below 7.0 unless he is feeling really uncomfortable.  He is hanging in there but based on today's counts, they have started an antibiotic due to the ANC dropping below 500 (which is expected) and he will most likely get a blood transfusion tomorrow.  Will it be his last one ever? Not sure, but it's interesting to think about!

 

He has decided that weekdays definitely are better than weekends.  There are more people in the hospital on the weekdays and more visitors like art therapy, music therapy, PT, the teacher, etc.  He also has been trying to keep up with school online which is around 40% successful.  At this point, I think the most successful class has been math because she is actually getting everything posted online.  He is not super motivated himself to do the work, which means I need to be pushing.  Several classes seem to delve into chaos within minutes, and one class seems to always have his camera facing either the ceiling or the floor, and it becomes impossible to hear what is going on, let alone see what is going on.  I'm hoping he can get through school this week and then we can take a few weeks break.  

 

Otherwise there has been lots of time hanging out in the playroom, meeting other families in the kitchen, and running around finding foods that ZiLong will like and eat that are not hospital food. The most recent one is chicken nuggets with buffalo spicy sauce- a definite winner!  He has been enjoying playing with gifts sent by friends and family- thank you all so much! They have really helped to pass the time!  I've enjoyed seeing our friends the crows- Bertha and Mabel- named after the two women who founded the hospital. They mostly hang out on top of the day hospital, but I saw them out my window yesterday!

Yesterday the glass company came to the hospital parking garage to fix our three windows that were smashed. Unfortunately they could not do the middle/slider window because it's really a two person job, so they asked me to drive to the shop so they could do it with support. I spent almost 2 hours waiting at the Safelite shop for them to replace the window, but they were al so nice, it's impossible to be frustrated with them. They even let me go sit in the little employee back area with a table instead of the small front waiting area with a TV playing at full blast!

At night, our room is lit by the light of the IV pole.  He sleeps well and does not have any issue in that area, so we just wait each day to see what the new numbers are and see how he is feeling.  I would be lying if I did not say there were some arguments over doing schoolwork, and in particular Math, but we are certainly getting through it! My main goal is not that he finishes every single last assignment, it's that he can generally try to keep up for the most part with his classmates.