14 Jan Update
Keegan’s appointments went relatively well yesterday, even if we do still have a lot of questions and decisions to make in the coming months. His bloodwork looked wonderful – so happy for that! Here’s what we came away with:
- Our amazing transplant cardiologist did a ton of research and consulted with several other leading cardiologists about the conundrum that is Keegan’s immunosuppression (i.e. the drugs he must take to ensure his body doesn’t reject his heart). She presented it all to me yesterday and sent me home with about an inch tall packet of research to read through this weekend. But in the end, it looks like we are left with just one option. No one throughout the country advocated for just using the current IV infusion drug as long-term immunosuppression. As I’ve mentioned before, that leaves us with one remaining oral drug. This particular drug has a tendency to cause ulcers in the mouth and GI tract, and that is something Keegan is prone to and really doesn’t need. But it looks like we will have to try it in small doses and give him secondary protection with a small maintenance dose of steriods. (Let me try to contain my enthusiasm over that one….grr.) Again, Gray and I want to be as fully informed as possible about this choice, but the truth is that it doesn’t appear we have one. He will get another dose of the current IV infusion next week, and then we will make a plan for where to go from there.
- From a kidney standpoint, he looks really good considering everything he’s been through in the last two months. He still has some blood in his urine, but the protein is gone. His urine is doing a good job filtering toxins, but it does appear he is not adequately producing enough to keep him from losing fluid out of his cells. This is probably what is causing his weight gain, blood pressure swings, and edema. He is on a “moderately high” dose of lasix to keep him producing what he is at this point, but we really don’t want to have to give him more. Diuretics are good at helping get the fluid off when you need them, but long-term use can be toxic.
- We need to get Keegan scheduled for a more intense kidney test that will give us a better picture of what his kidney function truly is at this point. We don’t know when that will be yet but hopefully soon. Until then, we will wait and watch and support him with lasix as needed.
- As of right now, Keegan will not be going back to school in the foreseeable future. He is too suppressed right now, especially with flu season kicking up. Even as we wean him from the stronger IV immunosuppressant, he will need to be closely monitored as we gauge his tolerance for the new drug. We can’t say we aren’t disappointed, but we aren’t exactly surprised. Given that Keegan’s team was so in favor of sending him to school in the first place, we know they are not taking the decision to withdraw him lightly. We are confident this is the best thing for him for now. Registration for next year is coming up, but we will need to talk to the school administration before making a decision for that far in the future. In the meantime, we’re looking into some other options to try to keep him learning and growing as best that we can.
You may have seen my update on Twitter or Facebook that as soon as I got back home with Keegan yesterday, I took Audrey to the pediatrician. We were suspicious of an ear infection, but she checked out fine. She’s just being ornery, I guess! Or maybe this is her sneaky way of getting to climb into Mama and Daddy’s bed in the wee morning hours. But tell me it’s not near impossible to say “no” to this little bed bug!
Speaking of the little Miss, it is time for her to get up from her last nap, so I’ll wrap this up. Thank you so much for your prayers for Keegan’s appointments yesterday and your continued prayers and support for his healing and strength. There aren’t enough words to express how much you lift us up during this very long journey. We couldn’t get through it without such a loving group of friends and family. Thank you.