We've had a hard week over here. Kate was "off" most of the week. She never had a fever, which was great, but my mom intuition just knew something wasn't right.
At clinic on Wednesday, her liver levels (specifically her AST and ALT) were slightly elevated which can be an early indication of a viral infection. We sent off several viral studies but everything checked out ok. Thursday was a very off day - tons of crying, lots of sleeping, and a baby that was just so far from Kate's post transplant normal.
We had clinic again Friday and all of Kate's liver values are extremely elevated. Her AST is 784 and her ALT is 598. If you know anything about liver values you know that is so incredibly high. Her bilirubin is also elevated as are several other counts.
As of right now all labs point to graft verses host disease (GVHD). While GVHD is common, I was pretty shocked that we skipped all of the "typical" signs they tell you about (skin rash, GI issues) and went straight to pretty major liver issues. Kate was started on steroids as that is the first treatment of GVHD and the plan as of right now is for her to have a liver biopsy (yet another procedure under general anesthesia) Tuesday morning to either confirm the GVHD or confirm other liver issues.
The steroids have been hard as Kate can't seem to really get comfortable and sleep peacefully while on them. We've had several long nights (hence the blogging at 1:30 am) this weekend.
The GVHD diagnosis has me in a funk. I know I need to snap out of it but, right now I am just over seeing all of the other BMT kids we know from our stay excel, move to less clinic visits, and just over all do amazing with their transplants. I am so happy for them - really, I am. I don't want to see any of these kids struggle. But, it's just hard to watch your child be the one who has been back in the hospital, who still has low blood counts, who is battling GVHD, and who seems to be having such a hard time with the entire transplant process.
I was totally aware of all of these complications when we entered into the BMT world. But, if I'm being honest, I never thought we would deal with them. I just always thought Kate would sail right though. Obviously that has not been the case and it's hard to realize, and accept, that we are just not on the fast, complication free track to recovery.
I'm also finding myself very bitter towards moms of healthy kids who freak out over every little thing. This is ridiculous as it is always hard to see your child sick - no matter how major or minor. Fever is no fun, colds are hell, stomach bugs are miserable, and sleepless nights are exhausting for every parent. I am constantly reminding myself that our situation is abnormal and that it is normal for parents to freak out about normal things. It's a constant struggle for me though - I know it is driven by jealousy and I need to work on not letting my situation and struggles discredit the day to day struggles my mom friends are facing.
I also need to keep reminding myself it could be worse. Yes Kate is struggling. Yes it feels like we are dealing with one thing after another (because we are). Yes it is no fun and stressful. But, Alex and I are blessed. We have a roof over our heads, food on the table, amazing jobs that allow us to not have financial worries and allow me to take so much time off to focus on Kate, and we have an amazing support system.
Now that I've gotten all of that out, if you have it in you, we could really use prayers for Kate, her liver, and the GVHD. I'm ready for my happy girl to be back!
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