Wednesday, July 22, 2009

Update

We've had a busy start to the week. I probably don't have much naptime left to post this, but I'll try anyway. Monday was transplant clinic. Keegan had two blood draws, a chest x-ray, an echo, an EKG, a breathing treatment, and a doctor's visit. The best news of the day was that he weighed in at an amazing 24 pounds! That has given us enough lee-way to play with his feeds a bit more, and we're hoping to be able to start three smaller feeds a day by next week. His heart looks just fine. Funny how the biggest, scariest part of his entire life and the one thing that is likely causing everything else to go haywire is doing great. Believe you me, we are overjoyed by the idea, especially after seeing sweet Hannah struggle through an acute rejection episode. His labs were about the same - liver numbers are still high but not climbing; electrolyte levels are still low but not lower yet. Blood counts are still ok but not rising as much as they used to in response to the shots. I've found myself summarizing Keegan's situation lately by saying that if any doctor picked up his labs without knowing his situation, they'd probably freak out. Yet, if you look at Keegan and if he could answer your question of how he is, he'd probably say he's just fine. Kids are amazing little people - so resilient, so positive, and so much stronger than an adult would be in this situation.

We see the GI doctor tomorrow to discuss where we stand with Keegan's feeds, g-button troubles of late, and general state of his GI issues. We meet with the nephrologist at the beginning of August to schedule further testing of Keegan's kidney function. We don't see hematology again until next month either. Still, I've been told that hematology, cardiology, and immunology are in discussions about plans for Keegan's treatment over the winter. We received some discouraging news from all the recent immunology labs that were run. Keegan has still been unable to produce enough antibodies to be protected against the illnesses for which he has been vaccinated. Basically, when you receive a vaccine, you are injected with a small amount of the actual disease (dead or alive) in order to have your immune system make and maintain enough antibodies to protect from actually contracting the disease. Keegan obviously needs this precious protection since he is immunosuppressed and susceptible to life-threatening infections (which is why he can't have live vaccines, since he can't fight them off). Keegan has not produced enough (or any in some cases) to maintain this protection, neither does his blood respond properly in a test tube to injected bacterias and viruses. The last idea that was being considered was putting him on some preventative IV antibiotics or IVIG to try to keep him healthy during the infection-heavy winter months. I"m sure we'll have more info on it soon.

The other good news of the week:

- We finally are scheduled for twice weekly feeding and occupational therapy at Baylor in Allen, starting tomorrow!

- Our transplant friend, Hannah, has been moved to the cardiology floor and out of the CVICU. Her heart function appears to have returned to normal, but she still has a bit of recovering to do. Thank you for all your prayers for this sweet girl.

- Our other friend, Carter, has been inpatient dealing with a recurring case of hemolytic anemia. He is stabilizing and has managed to stay out of the ICU this time.

Thank you so much for your support and love for not only our Bug but his friends also. What amazing children! Your continued prayers for all of them are much appreciated. Other than that, Keegan is doing ok. He has been having some trouble sleeping lately. We're sure it's just a phase, but it still has Gray and I a little on edge. One of the first signs of Keegan's troubles last year was disruption of his rock-solid sleeping patterns. It could be nothing, but it is sometimes difficult to avoid worrying about it.

Check out the newest photos of Keegan HERE. Thank you again. We simply cannot say it enough.

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