Post BMT Day +72
Post BMT +72
Our first night and day out of the hospital has been eventful! If you missed the hotel bed bug saga, back up a day.
Unfortunately, getting to our apartment at Brent’s Place during the night didn’t end in a restful way. Tate started vomiting shortly after arriving here and hasn’t stopped yet. She was up all night long with stomach pain and vomiting. We had seen this brewing prior to discharge yesterday but didn’t anticipate that it would progress.
We had a clinic appointment this morning at the hospital-10 am. Tate continued to throw up 3-4 times an hour through OT and her clinic appointment. Her day has been miserable.
Her team considered whether she should be readmitted today. She isn’t able to keep down any of her oral meds. Most importantly, the steroid for the GVHD. She also is short of her daily fluid goal 800 ml even with the tpn. The vomiting now means she’ll quickly land in a place of dehydration. Her labs have also shifted in an unfavorable way in the last 24 hours. Tate (or I) of course feel almost desperate to not be readmitted. So….one of her Dr’s will call tomorrow. If she’s still vomiting, not drinking and unable to keep down her oral meds, the decision will be made for us. Not looking great at this point.
The girls obviously didn’t make Prom. So very disappointing, but absolutely not even an option tonight. The combination of vomiting and Tates temp hovering just below “true fever” protocol made her ineligible even if she physically could rally. Normalcy is coming. We’re not giving up!
The good stuff….Keira! This girl is a rockstar. I would’ve been in serious trouble without her last night and today. Tate is requiring constant attention and care and isn’t able to be left alone at this time. Last night, Keira made trips to Brent’s Place to unload the car from the hotel in the middle of the night. A little Audi doesn’t fit 3, a wheelchair and a ridiculous amount of medical equipment and supplies very well. Thus, the multiple trips. This morning she dropped tate and I at the hospital and went to the hotel to safely pack up everything that needed to be cleaned/sanitized. Came back to BP, unloaded, and started getting through the laundry. All afternoon she laid with Tate, replacing puke bags, refreshing orange peels and in general making it possible for me to get the meds and central line, tpn/lipids and g/j stuff organized. She also is graduating from HS a year early, recently got her nursing assistant license and is now working full time while finishing up an AP chemistry course. And, will be playing college soccer next year at WLC in Milwaukee. I AM bragging on her a bit, but beyond achievements, the depth of her heart shines through in the things that matter most as evidenced by her willingness to put family first. Always. I’m so grateful to be her mom.
More good stuff…we survived day 1 of Tates ridiculous amount of medications, handled sterile cap changes and disconnecting, mixing and restarting the tpn/lipids. We’ll be adding in j tube feeds shortly which will mean Tate will be connected to another pump most of the day. The tpn alone weighs about 5 lbs when full. The G/J pump will add another bag of fluids. We’re telling Tate it’s part of her PT. We got to see some beloved faces today that we already miss! So grateful for a team that genuinely cares.
Thank you for all the prayers. We are pretty exhausted and are digging deep for stamina. As always, we are so grateful for all the love and support and need prayers that Tates body settles down so we can stay out of the hospital!