We were sitting out in the gorgeous weather in the courtyard at Duke today after taking Heath on the long-requested trip the cafeteria. Since we are desperately trying to get him to learn to enjoy eating again (we're thinking that there is actually some fear in eating after what we learned about his tummy health issues--see below), we let him pick whatever he wanted. He chose baked lays, a huge pile of cantaloupe (called "lroupe" in our house), and some chex mix. He actually cried when we took it away because we were afraid he would eat too much and throw it up--and then we both wanted to cry for joy in seeing our child WANT to eat for the first time in, well, months.This wasn't the first time that we have shed tears of joy in the last 24 hours. or tears of fear, either, but I am going lean on the joy tears. We waited alot yesterday--to get Heath to drink the contrast dye (anna is a champion!), to go to the CT scan, for results. We hadn't really shared with everyone some of the words that had been dropped about what they hoped to "rule out" with the scan (things like lymphoma, tumors/lesions, weird tissue infections). We kept praying for the "least bad" thing, even though at that point we weren't really sure what THAT was. When we heard the GI specialist say, "well, since we have been able to rule out all these things (the list above), let me tell you what we think is going on...," the tears welled up. I don't think we had even realized how much on edge we really were about the possibilities. It is still not an easy course, but it is something that we can work on, and it is not generally life-threatening. Heath has a sort of GI motility issue that is a random, but seemingly chronic, paralysis of the bowels. This means that every once in a while, things almost stop "moving" altogether and allow for bacteria, gas and poop (I couldn't NOT use that word one time--our nurse teased me about the amazing hand motions that went along with my discussion with the team that was doing rounds yesterday...just ask me to show you sometime. :) to collect and cause him to feel full and sick, not want to eat, get dehydrated, and all sorts of other fun stuff. There isn't really a "fix" but they have him on azithromycin, an antibiotic whose side effect is often moving bowels (well, around 50% chance it will work). And, we're going to just have to work with the GI folks (we have added another specialist to our pretty spectacular list of appts. at duke) to figure out what can help him. We at least have a better understanding of what signs to look for in his behavior to tell us that he is having an "episode" and to keep from what happened this time, hopefully. He was really more dehydrated than they first thought, so he is still recovering his strength and all that goes with that too. BUT, if you consider some of the alternatives, we're thrilled. Bring on the bowels. It is funny how your perspective changes with life experiences.
I think we're looking at heading home tomorrow or Sunday morning. Heath is VERY ready--and we've been very grateful for the distractions of friends, family and neighbors visiting to keep us busy! your prayers and kind words from far away, your visits, the meals, the grass-cutting. for standing with us to hear and cry at the news, both good or bad. for family holding down all of our forts--and taking special time with our girl. I went to bed last night, with a tummy full of broc cass. from Delancy's in Burlington, feeling so blessed to have so many wonderful people in our lives.
As ever, we are grateful for the wonderful care that we receive here at Duke. We learned that the GI specialist and radiologist had combed through all of our xrays from the past 2 years to see the corner of bowel that had been taken while xraying the chest to "put together the puzzle pieces" of heath's problems. Medical staff who we got to know so well on our first "visit" have come by just to catch up OR have seen me in the hall and say, "hey--how is heath?" They care. Of course, there are always issues when working with medical teams and hospitals, but I am still grateful for this chance at good health care, and I wish it for every sick child.
We'll let you know how things go as we get home. I will try not to bring tears to your eyes by telling you about how all things are "moving" in our house. hee, hee. I am a little worried about the potty humor that has krept back into our adult minds in the midst of this newest adventure...
blessings on your motility. :)
carrie
