Sorry that I did not post last week. It's been busy around here and time has gotten away from me again.
Just an update from last week:
We checked in last week and Alex had reduced O2 levels and increased liver enzymes so they were worried that Alex had RSV. NOT a good thing for a patient like Alex. So... they took a bunch of tests to see what was what. Alex was also experiencing some shortness of breath so they sent her down for a chest x-ray to make sure everything was good. The x-ray showed that everything was where it should be. I really think most of the shortness of breath came from Alex panicking over the RSV scare. She really didn't feel comfortable with going home so they kept her overnight and waited on all the blood tests. I picked her up on Friday with a clean bill of blood health... she didn't even have a cold show up. One of the findings from last Thursday is that her anti-rejection level was WAY LOW! This could have been the reason why liver enzymes were off and her O2. So... they bumped up her dose 3 times the amount she was on and had us came back to clinic two days before our normal visit (today).
Our 5 days at home has been pretty dang good. Alex is spending a LOT more time awake. She has started having a little coffee in the mornings (very little) and eating a bit more (a very little bit more). I have also gotten her out a few times for a walk. It's been a pretty decent 5 days.
Well... that brings us to today. Today's visit was a little hard to explain and I don't know how I feel about it... as I am not sure they know enough yet. They are a bit concerned with all of Alex's weight loss. They think she could be showing signs of GVHD in her intestines. BUT... I don't think she is eating enough to maintain any weight. SOOO... the goal this week is to keep Alex eating all day long. Little bits... all day. Her stomach needs to get working properly and she needs to put on SOME weight this week. Even if it's hardly recordable. It needs to happen. If she loses any more... or the nausea isn't getting better... they think they will have to do an upper GI and take a scraping to find out if there is some GVHD.
Alex's blood counts are terrific... they are:
Hct - 33.0 (red blood)
PLTS - 154 (woohooo... hit a low normal range!)
ANC - 5.4 (awesome!)
Another good thing we are trying this week is a 2 hour fluid IV each night, instead of the 12 hours that we have been doing. Of course this means Alex has to DRINK! SO... not entirely sure this will fly but we'll see.
When we got home from clinic Alex went for a walk with us around the whole block. It's great to have her out! The doctor encouraged her to get out and about any time she could... get things moving the way they should. I'm hoping we can get her out a lot more in the next week.
That's about all that is happening here. We are finally into the teens heading into our 100 day mark. YAY!
Please send good eating vibes!
Thanks for tuning in everyone. I will try to be better at updating.
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