Post BMT +145
+145
Day 4
The wins today…..Tim came this morning with coffee. My sweet niece, Micaela, camped out on the front lawn until I could sneak away. Brought me palisade peaches, Wisconsin cheese curds and thin mints. All favorites of mine which made for a delicious but interesting combination for my dinner. Thank you Mic!
IV zofran actually worked again (We gave up on it months ago) for Tate’s nausea and she ate 2 mini ice pops tonight. Tate was awake long enough to watch a whole movie with me. This is a rare occurrence. And, care conference is scheduled for Wednesday.
One of our favorite PA’s is on this week. Karlie has a baby girl named Tatum who turns 1 tomorrow. We hearing about her wild child and her strawberry themed party.
The challenges….symptoms continue. When I was visiting with my sweet niece outside, Tate got up on her own due to GI distress and as she was dry heaving in the bathroom garbage can, and in severe abdominal pain, she was unable to get herself back to her bed so had to pull the assist cord which does work. Two nurses were instantly there to assist her. So grateful! This does make me rethink leaving her at any time. She then ran a temp and required blood cultures and was in severe abdominal pain for quite a while. She’s now on precautions until a stool test comes back. No laundry, no leaving her room. A short term inconvenience. Mostly a big pain for the nurses as they have to gown up every time they come in.
I am having trouble getting her in and out of the bathtub due to weakness. So we are having to be a bit more creative with body mechanics. Looking forward to her PT coming by tomorrow because she specializes in great ideas!
LP will not take place until after the care conference which will include input from the adult movement specialist at University across the street. Not such a bad thing, just further out than we had hoped.
Chicago was brought up again as our next stop after discharge which just honestly feels exhausting. Nothing against the Windy City, but truly we just want to be at home.
Last night was extremely short on sleep and my morning started around 4:30. We have a new to us nurse which means I have more trouble relaxing, but like all of them, she’s way on top of things so I’m hoping for a bit more sleep tonight.
The messages and prayers are truly overwhelming. Thank you! After a day of processing and plenty of emotion yesterday and this morning, I’m ready to tackle this head on. My biggest prayer right now is a direction and quick definitive diagnosis so we can make decisions moving forward.