Post BMT day 242 # 2
+242
Day 9
We are home! It ended up being a LONG day. Surgery went fine. High blood pressure, then bleeding from the surgery site delayed discharge. We needed to coordinate antibiotic home delivery and I had to check off on training videos. Finally a concerning chest X-ray delayed things further. Follow up for that will take place Monday morning with Tate’s hospitalist/special care Dr. We finally walked through our front door about 8 PM. It’s these nights that I wish I could skip all the night duties, crawl into bed and pull the sheets over my head until morning. But….I’m super grateful for these little antibiotic “grenades.” Each one is a dose. She gets them every 8 hours. They are simple and portable and don’t require a pump or IV pole. Most importantly, they allow us to complete the next week of iv antibiotics home instead of in the hospital.
Dr. Nakano (Tate’s hematologist) stopped by in his sloth onesie. We love and appreciate this man so much. He was the initial driver in too many hours to count, researching transplant options for Tate. He presented her to the national boards and compiled as much information as he could find. He supplies a lab in Boston with samples for study and Tate is one of a handful that he’s completely studying her genetic material in a way that hasn’t been done before hoping to find answers for future kiddos. He’s one of the most brilliant humans we’ve ever had the privilege to call a friend. With Tate’s iron/blood challenges that are emerging, he’s back on active Team Tate. We ended up switching to Dr. Gumer’s team during the week ( intestinal rehab Dr.) She happened to be working inpatient this past week which was a bonus for us. We also adore her. Wish i would’ve snapped a picture with her. Her genuine care for Tate is apparent to all. Grateful!
This was an admission in which we felt heard and supported and loved. Seems we always come out with more than Tate went in with but we have a solid team to help us wade through the yuck. Thank you for the continued prayers!