Once again it has been far too long since my last writing. Unfortunately, this semester has been exceedingly difficult and I've had to prioritize my schoolwork. With the semester finally over, I can fill you all in with what has been going on with Landon. There have been far too many doctor appointments, late nights, and moments (good and bad) to write them all down. To save you all several hours of reading about minutia, I thought this blog would be best served as a state of affairs summary of how things are now.
After struggling for several weeks with an intolerable amount of gassiness, Karen and I were finally able to get Goat in to see a GI specialist in Kansas City. He was admitted to Children's Mercy and stayed for 3 days before the hospital team came to any conclusions. The biggest problem Landon's gas was causing is that he would become so filled with air that he would go into screaming fits and hold his breath. Due to his condition, he wouldn't trigger himself to breathe again and would start to turn blue and get cold due to lack of oxygen until we could force him to take a breath again. The problems as they were, the objective of treatment was to make him more comfortable by making the gas easier to pass but not necessarily prevent gas from forming.
The plan we came up with was to start Landon on a pre-digested formula so that his body would be able to absorb the nutrients right in his gut instead of breaking them down as the digestive process can produce a significant amount of gas (as anyone who has had a few too many beans can attest). The next step was a laxative to help the forward motility of the gas. Because Landon can't coordinate pushing to help himself potty, he needs softer stool to make the process easier. The first few days after we started him on the laxative were a diaper changing adventure as he was clearing out almost 6 weeks of backed up stool. He has definitely made up for lost time since then. The final change to Landon's diet was the addition of simethicone (known by brand name as Gas-X). This made burping easier for him by coalescing small bubbles with high surface tension into big bubbles with lower surface tension and easier reverse motility, essentially turning foamy bubbles into big bubbles that are easier to burp.
Another problem we ran into was that Landon began having seizures again and these proved very difficult to control. We increased his dosage of both phenobarbital and levitiracetam but he continued to have tremors and seizures when he cried. We finally figured out that the seizures seemed to be triggered by his breath holding and once we got that under control, the seizures abated a bit. He still is having tremors occasionally but they don't seem to affect his overall happiness so we are comfortable with his level right now.
More recently, we have been struggling with Landon spitting up big portions of his meals. The reason behind this is unknown but it poses a serious risk to his life. That's one of the challenges to having a child with Landon's specific special needs. Spitting up, vomiting, or even runny noses are a serious problem and we have to care for them vigilantly. The best therapy we've come up with so far is to change is feeding schedule and add erythromycin to his medications. Erythromycin in an antibiotic but it also speeds up how fast his stomach empties into his intestines so that he has less available to spit up. We've started feeding him 4 times a day, at the 9's and 3's, more slowly but greater volume. The less he has in his stomach at one time helps limit how much he can spit up and ultimately aspirate.
As I've mentioned before, we have a nurse that comes in during the day while I'm at school and Karen works. We recently qualified for respite hours from the nursing agency as well, which means that for 10 nights a year we can have a nurse come and spend the night so that Karen and I can get a full night's sleep. That's pretty exciting news for two people who haven't had a full night's sleep in nearly 8 months and we are already planning which days we will need someone to stay over. Most likely we will be using them on the nights before I have big tests so that I can focus or rest, depending on my level of preparedness.
For those who've asked how Karen and I are, we are still exhausted much of the time but doing fine otherwise. Karen still enjoys working at the jewelry store and has enjoyed decorating for the holiday season. Classes ended well for me as I managed As and Bs through some very difficult classes and with the added challenge of some long nights. Unfortunately, several of my closest friends weren't able to move on to next semester due to the devil of a class that is surgery, which claimed 15% of the students in my year. It won't be the same to study without them but I'm confident they'll find success their next time through. Next semester starts all too soon on January 8th.
In general, things are much the same for us as they've always been but fear is creeping into our minds a little more as time goes by. Each close call, each breath holding spell, every seizure makes us a little more afraid for Landon. While it has been a slow process, he has progressively gotten worse and we can only do so much to keep him from getting the flu or cold. If he were ever to catch a serious illness we would be in dire straits. You can only jolt awake to the sound of him choking in the middle of the night so many times before you wonder if one time you won't wake up. We have been extremely blessed to this point to have quick reflexes, light sleep, and a lot of luck. We continue to provide the best life for Landon that we can and I think, if he could tell us, he would say he's happy.
As we roll over from Christmas Eve into Christmas Day, I think it's important to recognize our blessings and the gifts we've received all year round. There were many times we questioned if Landon would ever get to see his first Christmas and for his presence today we are grateful. We have had the support of a community I'm confident can't be matched by any in the world. Despite our challenges, we find happiness in each day and try to be a pillar of love for those in our lives. Today we celebrate the birth of a baby who lived and died so that one day Karen and I can be with Landon again and for that I am eternally grateful. So Merry Christmas! Embrace your loved ones and enjoy each other on this special day.
“Then the Grinch thought of something he hadn't before! What if
Christmas, he thought, doesn't come from a store. What if
Christmas...perhaps...means a little bit more!” - Dr. Suess, How the Grinch Stole Christmas