Post BMT Day +78
Post BMT +78
I sit here realizing I didn’t even snap a picture of tate today. Today was long. The highlight of the day was Tim was able to spend the evening with us. It was so nice to sit on our little patio with him while Tate napped. The rest of the day was hard and I’m not feeling super positive tonight. Today was emotional and draining.
Tate woke throwing up again this morning and with the same migraine she’s had since Monday. We had run out of pain meds due to a pharmacy error and the combination of pain and nausea/vomiting makes the basics trying. The day was a drain right out of the gates.
Her appointment was at 9:30 and after labs, was supposed to consist of PT/OT. Total bust as Tate couldn’t stop throwing up and understandably didn’t see the value in it while hovering over a bag. Labs came back with electrolytes way off from less than 24 hours prior despite the adjustment in the new tpn that was started the night before. She got a 2 hour potassium infusion and needed a phosphorus boost as well. However, that one takes 6 hours so it was tabled to see how things looked after the K+. Repeat labs after the infusion showed improved potassium but still low. So…they want her back again tomorrow for another recheck and clinic appointment.
Tate’s GI system is not responding to the attempts to get things moving. We’re doubling down on efforts hoping for improvement so next steps can be taken with J tube feeds. She sees her GI Dr. in a week. She also was struggling with chest pain today which seems to be related to the upper GI GVHD. She had some blood in her G tube drainage today showing the ulcers in her stomach are still active. We need to be more consistent with the oral/topical steroid. Difficult when she can’t keep things down. We will keep trying.
White counts continue to be elevated and climbed again from just yesterday. She sprouted a rash on her face that I’m hoping will be gone by tomorrow. They aren’t sure if something is brewing or her bone marrow is still just figuring life out. Bottom line is she’s not feeling well. She regularly sees the other BMT kids eating and running around and asks how they feel so good. I have no answers. Tired tonight. The sun rises tomorrow. Or actually, it doesn’t. We’re getting a snowstorm in Colorado! Crazy CO weather! I had so many sweet offers for groceries today. Thank you! That wasn’t my intent with my post. I actually did get to run to the store while Tim was here. Did I mention that Grocery shopping is overwhelming when you haven’t done it for 5 months!?