Wednesday, February 27, 2008

Clinic Update

Just a quick update on how clinic went today. Keeg weighed in at 14.1 pounds! Obviously, he's still gaining weight even though I had been worried that he had been eating less lately. Chest xray, EKG, and labs all looked pretty good. Of course, his tacrolimus level was still low, so up we went again on that medication. Tacrolimus or Prograf is his main anti-rejection medication. Awhile back I explained that they are looking for a level in his blood around 15, but his usually stays within the 6 to 9 range no matter how much they increase his dose. However, his cylex assessment (the test that shows how effectively his immune system is suppressed) continues to be low. That means that his system is "nice and quiet" according to Dr. Barnes, despite not being where they would like on his tacro. The cylex assay takes about 2 weeks to come back. They pulled blood for another one last time we were at clinic, so we should get the results of that soon.

Keegan was supposed to get his last Synagis shot today (the $2000 bugger that staves off RSV, a sometimes fatal respiratory infection). This would have been his 6th dose, and our insurance only approved 5 initially. By the time we left the hospital today, the insurance company hadn't responded with the clinic's request for today's dose, so we'll have to go to the hospital later in the week again to get it. It's a pain for us, but Keegan loves going so much he won't mind - even if it is for a really painful shot. He gets to see all his nurse/doctor/surgeon friends and occasionally some ICU buddies. Today, we got to see Tucker when he was coming in for a check-up. He's two weeks younger than Keegan and already almost 17 pounds! He has had some rough patches after surgery and being on ECMO too, so we're praying he got a good report today.

A few things had us worried over the past week. Keegan had not slept well in days on end. He seemed uncomfortable alot and would fuss and cry all night, which is not like him at all. On Sunday, he went into a completely unprovoked, absolute frenzy of a fit for a good 10 minutes. When he calmed down, his color was completely ashen and his hands and feet felt cold. We were about to call the transplant coordinator on call when Marci came over, and he immediately turned back to normal (see what effect you have on this kid, Marci? ;) ). Then on Tuesday while I was in court, my mom noticed some blood in his diaper. We definitely called then, but since we were coming in today, they wanted us to wait based on what we described. Dr. Barnes checked him out today, and they saw no immediate cause for concern about the bleeding. They also checked his ears just in case he had an ear infection, but no go on that either. Perhaps he is in the throws of teething pain. Really makes you wish the kid could talk. He's such a happy baby that the slightest difference really makes you wonder if it's "normal baby" or something more. I feel like every minute I'm just waiting for the bottom to fall out, and it's very tiring.

Not much else going on. We're just working and trying to get by each day. Gray and I both have grandparents who are not doing very well, so please keep Chum and Grandad in your prayers if you can. We posted a few new pictures and a video of Keegan in his jumper. We have our first fundraiser, a wine-tasting/bottling, at Swirll in downtown Dallas coming up on Thursday, March 27. I'm gathering the last bit of info to post on the ACTIVITIES tab, so please check back soon. DCDLA has confirmed that their golf tourney on May 22 will benefit Keegan, so please watch for more updates on that too.

Thank you to everyone for remembering Keegan. It is so touching and renews my faith so much to hear your compassion and concern for all of us. We hope you are doing well and that you remember the blessings the Lord has given each of us daily.