Sunday, February 22, 2009

Update

Sorry for the delay in posting. Things can get crazy quickly at the hospital. Keegan's doing well - same ol', same ol'. We moved down to the GI floor on Thursday evening, much to Keegan's chagrin. He likes all the nurses down here for sure, but he doesn't seem to like the location very much. Our room was hand-picked by the GI charge nurse to put him right in front of the fish tank that he loved to look at last time. However, this go-round he seems bound and determined to escape. If we walk out of the room to go see the fish, he keeps going - right on out of the unit and doesn't want to turn back around! It's pretty funny. He's getting better at walking while holding our hands. Hopefully, he'll get it figured out once we're home.

Friday morning was very, very rough. We had been waiting on having a test called a gastric emptying scan. It requires mixing a radioactive isotope into Keegan's feed, and then looking with an x-ray to see how fast the isotope moves through his system. Evidently, the one plant in the entire world that produces these isotopes was temporarily shut down, resulting in a worldwide shortage. The doctors didn't deem Keegan emergent enough to use up some of the isotope, so they ordered yet another "upper GI series" set of xrays. This is where they put barium contrast down Keegan's feeding tube and watch it move through his system with x-ray. For kids Keegan's age, they strap them to a board to keep him from moving, which he of couse hates. It was ordered to make sure Keegan didn't have an obstruction in his intestines that caused the dark vomiting. This time it confirmed that Keegan's ability to empty food properly out of his stomach is severely impaired. We pushed the barium, and it sat and sat and sat in his stomach. The radiologist turned him every which way from Sunday on that board, and Keegan was screaming up a storm - both of which should have helped him empty the contrast into his small bowel. We sat there for what seemed like forever, and I was about to say enough when the radiologist suggested sinking a second feeding tube down his nose to at least get some contrast in his small bowel to check for obstructions. Well, that pushed some out of his stomach into his small bowel, and the rest he threw up. Not fun. Needless to say, we don't need the gastric emptying scan any more!

After the stressful test, Keegan was exhausted, irritable, and was in some pain, so we gave him some tylenol and let him sleep. The attending this week is the chief of the GI department. He read through my 6-page medical history of Keegan, spent quite a bit of time talking to us, and wanted to try a new medication that might help stem the vomitting and hopefully also help Keegan's tummy process better. It's actually an antihistamine (allergy med), but it has been used effectively to treat what's called "abdominal migraines" or "cyclical vomiting". He doesn't think Keegan actually has either of this syndromes, but some of his symptoms are similiar. He's had 3 doses of the medication so far, threw up the first morning (Saturday) but not this morning (Sunday). It will take some time to see if the med will work. This is NOT the ultimate answer for Keegan. It does not explain his diarrhea, his inability to absorb and process nutrients, etc. However, we believe if we can stop the vomitting and help his tummy actually "let go" of his food properly, especially when he's asleep, we may have a clearer picture of the remaining symptoms.

We still think that the most likely explanation of Keegan's problem is that he has underdeveloped intestines stemming from problems associated with his heart defect. If we can help him stop vomitting with this one medication, we can focus on how best to help him deal with everything else. The plan for this hospital stay is that IF Keegan does not throw up tomorrow (Monday), we can work on getting things in order to go home. YEAH!! So, please, please pray that Keegan does well overnight and does not throw up tomorrow!!!

One last good piece of news from this week, we re-ran labs today to see if Keegan was able to produce any antibodies to the immunization boosters we gave him in January, and he did!! Another YEAH for Keegan! It's one more good thing, but immunology is still going to follow him. There are some other concerning things in his labs recently, but they are going to watch them and wait for now.

Again, we are so very thankful for your prayers for Keegan. We are so tired in our search for healing and help for our precious Bug, but we have renewed hope in recent developments. We have prayed to see improvement without having to travel with Keegan and expose him to new people and germs. Your support and prayers have kept us going through all this. We love to get your calls, texts, emails, and guestbook postings. We know that this has been tedious to y'all also, but we are so humbled by your faith and hope for Keegan. Thank you. More tomorrow!

Show me your ways, O Lord, teach me your paths; guide me in your truths and teach me, for you are God, my Savior, and my hope is in you all day long. Psalm 25:4-5