Wednesday, February 18, 2009

Update

Keegan's doing ok tonight after an iffy day. He didn't sleep great last night with lots of air and some distension of his tummy, but since he had no feeds after 5pm, he did not throw up this morning. (Yeah!) The good thing that tells us is that if we don't feed him at night/overnight, he won't throw up. The bad thing is that he needs the calories and formula to gain weight, and he can't take that much during the day. Today he was just generally ornery and uncomfortable most of the time that he was awake. He slept on and off for a lot of the day. He had been taking one nap a day for over a week, but today he took 4. He also had several of his "pain episodes", with an especially bad one this evening around 6pm (sorry you had to hear that one on the phone, Chelle). Gray thought it was the worst he'd had since he had the hives in reaction to his meds back in October. It absolutely kills me to see my baby in pain and not be able to help him or know where the pain is or why it hurts. Please pray that these are lessened tonight, so that both Keegan and Daddy get some sleep.

We've suspected for months that Keegan's stomach "falls asleep" when he's sleeping, but we're more certain of that now. We also suspect that he sometimes cannot even process his own bile secretions (hence the nasty color show we saw yesterday morning). Today, we gave him half his normal formula rates, and we've played around with his feeding schedule to have them finish earlier. We'll see if that helps. Fingers crossed. Tomorrow, we are scheduled for a gastric emptying scan to try to confirm these ideas. The problem will be scheduling it at a time to best simulate his overnight problems, but we'll just have to do our best. Keegan is also scheduled to have a series of xrays he's had before called an "upper GI series with small-bowel follow-through". This is to make sure the funky colored throw up and Keegan's recent pain and excessive air build-up are not related to an obstruction or abcess, perhaps a complication from his last surgery.

And now the glimmer of hope!!! We'll only call it a glimmer for now, but it's the best lead we've had in months. BIG thank yous go out to Dr. G and Dr. Albert in advance! Unfortunately, it's a "diagnosis of elimination" or an educated guess of what has happened. There's no way to prove our theory except by elimination of other possibilities and the nature of Keegan's symptoms. It makes a lot more sense than any of the other diseases or disorders we've tried to pin on Keegan in the last few months. Essentially, we're thinking Keegan's intestines may have underdeveloped due to the stress of his heart condition in utero. I don't want to go into a lot of detail just yet until we have more information. Again, it wouldn't be curable, but with a better working idea of what's happening, we can better tailor his treatment and management. More importantly, it would give us some peace of mind that we're not biding our time waiting on an elusive diagnosis that would never come. Or as one of the GI doctors said today, giving Keegan more and more scary diagnoses just to encompass his symptoms.

Sounds like we'll be moving down to the GI floor tomorrow or at least by the end of the week. This stay will likely be at least through next week, as the doctors have already used the phrase "over the weekend". (Happy birthday to me. Yeah.) Thank you for your prayers for Keegan and our entire family. We are so tired of the back and forth between the hospital and home. We truly hope this will be the end of our searching and the beginnings of a better life for Keegan...and all of us.