16 Jun Updates on 2 kiddos
Another quick update again tonight. I am going home tonight to get ready for a presentation I’m giving to the Executive Committee of the Solid Organ Transplant Center here at Children’s tomorrow. If I get approval from the Center’s leadership, the program will be a great step forward in achieving patient-family centered care for our transplant patients. I would love your prayers for clarity and support tomorrow…especially since it will be VERY early in the morning when my brain will likely not be working too well. More about that if we actually get a thumbs-up tomorrow!
So, this is an update about both kiddos. First, Miss Audrey had her one-year well child appointment today. She is only 18.5 pounds, so still just a “little bit”, as my dad calls her. She has gained weight and 2 whole inches though, so her doctor feels comfortable with that. No more formula for Audrey! All in all, she got a great report, except that she does not “cruise” on furniture yet. She will walk holding your hands, but she hasn’t felt the need to be self-propelled yet. If she doesn’t start in the next 6 weeks, we’ll reevaluate, but I’m sure it’s coming. Audrey also got all her vaccines today, including the live ones, with the approval of the transplant team and Infectious Disease doctors. They felt it was better to vaccinate Audrey to protect Keegan than the small risk that she would expose him from a live vaccine. So, here’s praying that she doesn’t develop any reactions to the MMR or varicella that would be dangerous to Keegan! After her appointment, she and I went to lunch with Mamie and Alex before I had to return to the hospital. It is so crazy to me to watch her dance with excitement as she eats!
And now, about Keegan’s day…he is beyond, beyond, beyond pale. And so very tired and lethargic. He refused to walk today and even was highly reluctant to take a small wagon ride around the hospital. He took an afternoon nap but still was asleep by 7:45pm. There is no way we will be discharged before the weekend. He still needs blood, and he will likely need more IV lasix after that. We are slowly getting scope results back. They look grossly the same at first glance, but we’ll await the official biopsy report before making any changes to our plan, if at all. PICC is out!! (That was no fun. Very glad I was at Audrey’s appointment so that Dad had to handle that one.) So far, I think he has tolerated the steroids well. He is still bleeding from the scopes, but it is slowly getting better. The only other curveball he threw us today was that he was having a very, very difficult time processing his extremely minimal tube feedings. Not quite sure what to make of it, so we will just continue to watch for now.
I will be honest and say that we are dealing with a lot of other things going on with Keegan right now. Not good things, but our team is doing a wonderful job of being proactive, involving us, educating us, and researching the best options for Keegan. We are nowhere near ready to go into detail of everything, but we would really appreciate your prayers for Keegan’s safety and healing, clarity and wisdom for his medical team, and peace and strength for our family. Please know that we will share that information when we are ready. For now, we appreciate your support and understanding. Thank you again for everything!