Tuesday, May 19, 2009

Cardiology Clinic

Clinic went well but very long yesterday for Keegan. Daddy was able to accompany us back to the hospital today, a truly special treat. Keegan was certainly back to his old rockstar status. Everyone wanted to come say hi, and by far, the most uttered phrase of the day was "He is SO big!" (Big being a relative term, however, since at 20months he's more the size of a 12month old...but big for Keegan.) And he is - his weight was down, but obviously, this is a different scale. Even with some weight loss, he's still 21 pounds. Light years away from the measly 14 pounds he weighed in November.

Keegan's chest x-ray was "beautiful" according to Dr. Barnes, and his EKG was stable. We were able to avoid an echo until July because he had one before leaving Boston. Labs were mostly stable but a little off. His liver enzymes were up a touch, no need to worry yet though. His red and white blood cell counts are being kept at good levels (at least good for Keegan) by the current 4x/wk shots we're giving him. A few other things were off, but the doctors are giving him until next Friday to redraw labs before taking action. Dr. Barnes (Keegan's cardiologist here) is not going to alter anything in "the plan" from Boston at this point. Good choice, since we probably wouldn't have agreed with changing it anyway. Keegan's kidney function was the only other topic of the day. We agreed it was time to refer him to a renal specialist to have a procedure done that will evaluate Keegan's current level of kidney function. The diuretic he's on now will be continued. We don't anticipate having to do anything special about his kidneys (or rather, one non-atrophied kidney) now. We just want to know where we stand now for comparison in the future.

Between catching up with everyone and doing all of the above, it was almost noon before we headed over to his hematologist's office to get his pentamadine (a breathing treatment to prevent pneumonia). Of course, his pentam wasn't ready, so 45 minutes past his naptime we were heading back to the main hospital for the treatment. Needless to say, Keegan had a royal meltdown in the treatment chamber and completely passed out in his stroller afterward. That allowed me to catch up with Dr. Leonard (who performed K's first open-heart surgery) and Dr. Guleserian (his transplant surgeon). By 2:20pm, a full 6.5 hours after arriving, we were in the car on the way home. WHEW! But, drum roll....next month, he only has labs and pentam...and it can be done at Legacy! He'll only have one more full-fledged cardiology appointment in July before his annual and cath/biopsy in September. I'm floored by that...a good floored!

Today I went back to the hospital for my monthly family advisor meeting. I'm hoping that my role in the hospital administration will facilitate some changes to prevent our previous experiences from happening again to Keegan or any other kid. Everyone was very anxious to hear about Keegan, and there was a collective "wow" when I announced that we have been home since May 1 - the longest we've been home consecutively since the last week of August 2008! Can you believe it? I almost don't want to put that in writing lest I jinx it. Well, we won't let it get jinxed - we are here to stay for awhile. We're still trying desperately to get Keegan's therapy schedule in place. No more appointments this week. Next week, we'll see Keegan's pediatrician, hematologist, gastroenterologist, and dermatologist. We don't see immunology again until the end of June.

Thank you so much for your prayers for our friend, Paul. His surgery was successful, and he is at home recovering. Your continued prayers would be appreciated as Angie cares for Paul and Avery in the coming weeks. She is a superwoman! As always, we are so grateful for your prayers and support for Keegan also. COTA has been such a blessing to us. We truly could not have survived the last nine months without your dedication and generosity to this cause. Your donations have helped Keegan and many other transplanted children. Due to Keegan's history, his deductibles have exceeded $10,000 per year, and he's not even 2 years old. It certainly won't get better from here. Because of COTA though, we don't have to worry about making sure Keegan gets the best medical care, regardless of holes in or insurance coverage. The Lord's work is truly being done through so many of you, and we are humbled to experience that blessing every day. Thank you, thank you, thank you.