Thursday, July 2, 2009

Update

So, this week's been pretty busy. We'll start at the beginning, since that's always a great place to start. Right? Lots of info, so stay with me!

MONDAY - Early Childhood Intervention planning meeting. This went well, if you ignored Keegan's insistent, loud, and thoroughly annoying screaming the entire hour and a half. The screaming is a combination of inability to properly communicate (exactly what we'll be working on with the speech therapist) and always wanting to be part of the action. At any rate, the consensus was to begin once a week feeding/speech therapy with ECI, and every other week sessions to work on Keegan's cognitive/developmental issues. The therapists will give me 5 or 6 strategies to work on, and we'll evaluate Keegan's progress at each meeting. I'm not sure it's enough sessions to really help, but it's something! Considering Baylor STILL has not come through with their plan almost one whole month after Keegan's evaluation, I'm just ready to get started period.

While we're talking about feeding and therapy however, did you see my Tweet from earlier this morning? Keegan ran to his highchair when I said "let's eat breakfast", and then, he ate mini-waffles!! This may sound silly to you, but it was an ENORMOUS step forward for Keegan. Now, I need to clarify that "eating" means he picked them up, tasted them, sucked on them for a bit, and let some of them dissolve in his mouth. When there was a little too much mushed waffle in his mouth, he freaked out a bit, but a sip of water helped. Needless to say, we're hoping to start turning a corner with Keegan's interest in eating. The doctor even gave me permission this afternoon to reduce Keegan's tube feeds more during the day to hopefully induce more hunger/interest. We'll see how it goes!

TUESDAY - Immunology appointment and labs. The immunologist was glad to see Keegan was doing well, but she didn't really have much more info for us than that. She still believes Keegan has his own little version of an autoimmune disease/problem caused by the transplant and subsequent immunosuppression meds. She thinks his immune system is confused. It knows something's up but can't figure out what, leaving him with a ton of nonspecific antibodies that all go about doing their own things and affecting his intestines, liver, skin, blood, etc. Again we heard, "his bloodwork is definitely off, but not in a way that tells us what's wrong." Helpful. Due to the large amount of blood needed for the immunology workups, the remainder will be drawn next Friday with more liver levels. Keegan's immunosuppressant levels were low Tuesday; add that to a mystery fever he had last week, and we were suspicious that his liver was acting up again. So, we increased his meds and will see what happens next week.

WEDNESDAY - Meeting with Children's Chief Medical Officer about communication problems in the hospital (don't think that's his official title, but the best way I could describe it). This went really well also. At times, I felt as though he didn't think I was telling him anything new, and I'm sure I wasn't. But luckily, Keegan has touched enough people to be a great impetus for change in the hospital. We're working on a very exciting change that will be wonderful for future inpatient stays at least. The harder question is how to handle the in-between communication problems. I'm really very excited to have been invited to participate in this task force and look forward to making hospital stays better for all the kiddos.

THURSDAY - G-tube replacement. Keegan's gastronomy button, where his tube feeds are hooked into his tummy, had been leaking more and more lately. Come to find out that there is a nationwide problem with the particular size button Keegan has, so the GI doc had us come in to replace the button with a new one, get a weight on Keegan, and discuss his tube feeds. The button replacement went very smoothly. Keegan barely cried. And brace yourselves people, Keegan weighs 10.7 kilos (23 lb 9 oz)!!!! ARE YOU KIDDING?!?! I felt like I was on CLOUD NINE, y'all!! He weighed roughly the same at his immunology appointment Tuesday, but it was with his clothes/diaper on and on the standing scale. This time we went "au natuel" on the baby scale for the most accurate weight. Amazing, just amazing. Gray and I have worked to increase Keegan's tube feed volume at night (historically a bad time for feeding him, if you recall) over the last two weeks, and now with the approval of his GI doc, we're going to start reducing his overall daily volume. We hope he'll pick up the calories in oral feeds if he gets less formula during the day. We'd love you to pray with us for continued small steps forward daily on the feeding front.

Ok, I've flooded you with too much info today. As my friend Jennifer sometimes says, are your retinas bleeding yet? Thanks for sticking with us through all the craziness. Your reward is new photos of the Bug HERE! Lastly, please continue to pray for our dear friends the Akemans. They are facing big decisions with little Miss Avery's care, and Paul continues to struggle with back pain after his spinal surgery. My last prayer request is for dear Nate. He spent a lot of time in the ICU this winter, and he is back there yet again for another infection and pulmonary problems. He is such a fighter. We pray for a quick recovery, so he can play with his brothers again soon. Thanks so much.