After the stressful events of yesterday, I had a foreboding feeling on our way to Topeka today. I should have known better than to doubt my little fighter and his doctors. We arrived to find Landon hungry, grumpy, and seizure free. Having returned to his normal anti-convulsant dosing schedule, Landon's level of phenobarb is more stable and better controls his seizure activity. Even when he was extremely stimulated during a full workup (diaper change, weigh in, blood pressure check, new EKG leads, temp, and clothes change), he remained seizure free.
Landon's report for the day was one of quiet stability. No seizures, no oxygen desaturations, no temp drops. An uneventful day seems like a huge step in the right direction after the fiasco that was yesterday. No news was great news. We even celebrated the tiniest of victories, moving from newborn to size 1 diapers! Apparently he has inherited his father's appetite and seems to be constantly hungry. We changed is feeding from every 4 hours to every 3 and I fully expect him to still be unsatisfied.
As you can see from the video, Landon is making tons of progress on learning to suck (I apologize for my helium high voice, I haven't perfected baby talk yet). He is actively looking for things to suck on and he frequently gets in a rhythm of several pulls in a row. He is still unable to effectively swallow and breathe simultaneously but we are hopeful that those skills will develop with time. For those who are concerned, the sounds he is making are not straining to breathe, it is actually the fluttering of his vocal cords. Most of us have muscle tone that helps hold our vocal cords in place when we are breathing and otherwise not trying to make sound. His body can control his cords when trying (as when you hear him cry) but fails to hold them in place when he doesn't want to use them. This is something that many babies develop over time as they get older and stronger. To all my vet school friends, yes it sounds like tracheomalacia but I was assured that it was not (I asked the same question).
These moments of alertness really show the great progress he is making. He is obviously not a baby that is struggling to survive but one that is doing his best to thrive. Karen and I have made it a goal to foster his efforts in every way we can, even if that means a little less sleep at night and a little more education on supporting a baby with special needs. We are being trained to use an apnea monitor in the morning and to evaluate mobility and strength by an occupational therapist later this week.
We are still awaiting the results of genetic tests being run this week. We should know much more about Landon's condition on Thursday or Friday when these test results come back. As of right now, Karen and I are optimistic about the results. Little Goat has already exceeded the expectations of many and shows an eagerness to do more every day. The biggest risks to Landon's health right now are seizures and secondary infections. As we learned yesterday, a strong seizure can paralyze Landon's diaphragm and stop his breathing. With the adjustments being made to his anti-convulsant regimen, we trust that we can establish a long term solution to that problem. The risk of secondary infection is very real for Landon if we can't get him to suckle to feed. The insertion of a naso-gastric tube can easily introduce dangerous bacteria to his system and a G-button poses similar risks (as well as those associated with a major surgery, particularly on a respiratory compromised baby).
Sometimes the battle against Landon's condition seems like an endless war, something we can never win but must always fight against. It is easy to see the disease as an opposing soldier that is attacking Landon, something that is taking him away from us. When I think about it though, this mindset is hurtful to Little Goat. This disease is most likely in his very DNA, what makes him who he is. If we wished he was different, we wouldn't be able to cherish the person that he is with our whole hearts. That doesn't mean I'm glad he has this condition, but rather that I embrace everything about Landon, ailment and all. He is my unique angel and he is teaching me lessons every day. There is no beating this disease, but luckily we don't have to win any battle to win this war. We are already victorious because we don't see Landon as broken or something less than what he could have been. We seem him as a champion of his life, excelling in every way he can and inspiring his mom and dad.
"Whenever you are confronted by an opponent, conquer him with love." - Mahatma Gandhi