01 Nov Update
Sorry for not posting yesterday. Halloween was a busy day around here. Keegan’s blood counts were extremely low again yesterday, and he was very lethargic. He was asleep most of the day, even most of the time we were at the Halloween carnival. We were finally able to get him two units of blood and put him back on TPN yesterday evening. That really helped perk him up today.
We had our care conference yesterday morning, and Gray and I feel like it went very well. Don’t know how everyone else felt. Ultimately, we just wanted everyone on the same page about what kind of communication we expect from their end and what type of participation they should expect from us. I think it helped the transplant team to sit down with representatives from radiology, MRI, and diagnostics also. They were able to learn how to better communicate with each other when things aren’t going as planned.
Children’s GI finally came to meet with us and evaluate Keegan yesterday afternoon. They scheduled him for an immediate colonoscopy, which he is actually in right now as I’m typing. There are so many things that could be going on with his system, and the colonoscopy and a repeat of the upper endoscopy are just the beginning of this continuous elimination process. We’ll post again this afternoon with results, and we are fervently praying that we are able to end the day with at least a bit more information than “everything looked fine.”
Keegan was the cutest Itsy Bitsy Spider ever yesterday. He was able to go to the carnival for a bit. Then, we went to visit his friends in clinic and the CVICU. Last night, we put his costume on one last time and did some “reverse trick-or-treating.” Mamie and Big Daddy brought some candy up, and we walked the floor handing out candy to nurses, doctors, staff, and any other kids whose parents said it was ok. Mamie and BD also brought the Huffman family tradition of chili and ghost cake up to the hospital, so that we didn’t have to miss out on that either. We’re trying to post new pictures of yesterday’s events. If they’re not up right away, we’ll get them up soon, so keep checking.
Please pray that this colonoscopy and upper endoscopy are able to provide an answer for Keegan that he so desperately needs now. We’ll update again soon. Thank you!