Post BMT +55
Day 117
Post BMT +55
I caught a smile today to share with you.
After the overnight vomiting and GI issues and the 102+ fever this morning, the rest of day 2/2 of IVIG was pretty standard. Lots and lots of meetings and discussions took place today. A whole “rehab” in the BMT wing plan was created by the new attending (whom I love) and then pretty promptly squashed by Tate’s BMT Dr. (who I also love.) He tends to be very relaxed and feels strongly that if Tate can get her bare minimum discharge boxes checked, she can go. I also agree that the rehab plan is a good one. But, We believe that she will progress better once out of the hospital. The other side doesn’t feel she is ready and is worried about all the “what if’s.” What if she doesn’t eat, move enough, continues with vomiting and diarrhea, can’t tolerate the water needed in her g tube instead of iv, can’t tolerate the formula, pain gets too bad, etc. They want her to be able to discharge and not have to come back. I tend to sit on the other side of “Let them go and see. She can always come back.” Bottom line is as more opinions form about what is best, the expectations become less clear and frustration grows on all sides. The goal from everyone though is the same…to get Tate well. We are ready so are really pushing for Monday to move to the apartment at Brent’s Place.
They moved Tate’s IV fluids to a water bolus through her G tube tonight. It pretty instantly increased the nausea, but Tate copes by pulling her sleeping mask down and trying to sleep through it. Tomorrow they will start a trickle feed through her G-tube. It Will make her sick, but there is no way to try and reboot her GI system without pushing forward. We’ve tried everything else. She will leave on tpn and lipids, but these are boxes that still need to be checked as my goal is off the tpn/lipids as soon as is possible!
The fever responded to meds and has not come back. They’re starting to think it’s just her body’s reaction to distress. Fever protocol outpatient is annoying, so praying this pattern doesn’t continue.
I don’t “like” all the comments from you all but want you to know I read every single one; often more than once. I am so grateful. You all really carried me today. Your beautiful, encouraging words were salve to my bruised, exhausted heart. I’m out of fight for the week already. I’m praying after all the dialogue today I don’t need as much tomorrow and there will be a little more unification on the care plan. Tate has a lot to muscle through this week. I know with a little prayer support, she can do it. We can do it. Thank you for loving us so well! We thank God for her tribe!