Who would have thought a year ago, heck even 6 months ago, that we could stop focusing on Wyatt's needs as our primary daily worry.
The hiatal hernia repair surgery in November of 2012 transformed this kid in such a positive way, I sometimes have to take a second look to make sure the hospital staff didn't accidently give us back someone else's child. Recovery was drawn out and argumentative as usual and we had some pump feeding issues for a little while post-op but it was because of these same pump feeding issues, that we were so sick and tired of, that we dared to take a chance. Every doctor we had ever met was always so concerned that Wyatt would lose weight, they didn't even want to try weaning him off the pump feeding, always stating that his body already uses so much energy trying to breathe. If they knew more about CCHS they'd know that his body, well specifically his brain, really could care less about breathing ;) Knowing our son's personality though of readily taking the easy way out or playing the sympathy card when given the chance, we knew that if we stayed on this path of scheduled pump feedings he's never learn to eat on his own. So we first switched him to only a continuous overnight feed making sure he got all his daily calories he needed, and then allowed him to eat whatever he wanted during the day. Based on how much he ate during the day, we'd lower his pump feeding volumes at night. Wyatt did ok with that method but still had days where he was simply too lazy to even try to eat and since he had all his calories over the course of the night, he wasn’t hungry for breakfast and he often had stomach pains from the pressure of the pump feeds. And frankly, hooking up a pump feed every night and making sure it doesn't come undone just to leave a big mess all over the place was getting old very fast. So we decided, what the heck, we'll try it for three days without any pump feedings and see how he does. Damn I wish we would have had the guts to do this a long time ago. By day two he had discovered his love for food and all we had to do was encourage him to drink sips of water between bites. That was the end of the pump feeds. Ironically it took us blindly giving it a shot against doctor’s recommendations and simply trusting in Wyatt’s abilities to realize he didn’t have feeding issues in the first place, he has saliva production issues that caused him to get frustrated while eating. He doesn’t produce hardly any saliva and therefore food gets stuck on the roof of his mouth easily. No doctor was aware of that or had even considered that to be a possibility. It was always assumed that CCHS also meant oral motor skills delays. We always knew his skills were there but couldn’t figure out why he wasn’t progressing in the oral feeding department. A few sips of water in between bites, problem solved! That’s what I hate about having a medically complex child. You start to over think everything and treat everything as a medical issue first before using your common sense. Well, lesson learned – simplify! Not only did the surgery lead to him now eating independently (NONSTOP), Wyatt is now also SLEEP-VENTILATED ONLY!!! I never thought we’d get to this point but again, it took having the guts to trust his abilities! For those of you who do not have a child on a ventilator, I’m sorry, there is no way I can explain to you what a difference that makes. Sure, we still have to take his equipment with us everywhere we go and we are still too nervous to try to let him sprint while driving in the car but we can pick him up and go in our backyard or upstairs now and leave his equipment on the chart. Since being able to come off his leash as I call it, he’s made huge progress crawling like he’s racing someone, crawling up the stairs, and standing up and walking assisted. He knows his limitations when he’s hooked up to the vent and is now able to take full advantage of his freedom when he’s sprinting. He still throws his tantrums and passes out so we can’t leave him out of sight but him being mostly independent of the vent during awake hours is a huge relief on all of us. And now that he’s vocalizing more making up his own language with the weirdest sounds, you can often audibly tell where he is at which is also something that wasn’t possible before. I swear he can call whales and sea lions, imitates donkeys even though he’s never met one, and plays like a dog by still picking up balls with his mouth sometimes. And the eye contact he gives you is so hard to resist. He’s a character, always ready to entertain and he so knows how to wrap people around his little finger… Last year we were not able to enjoy these moments because he always had some sort of medical issue and threw so many blue spells we could never relax. Today, he still throws 1-5 blue spells a day but we’ve learned to “ignore” them and only observe from a distance as they are now mostly attention getters and when hooked up to the vent, he usually recovers on his own. He’s learned to accept car rides as normal routine and rarely throws a tantrum in the car anymore which has allows us all more freedom and we are comfortable enough to not have an adult sit next to him in the backseat anymore. Heck, we’ve gotten so in tuned with his routine and cues that we don’t even hook up the Pulse Ox or CO2 Monitor to him anymore unless he’s sleeping or seems a little off. Overall, 2013 so far has started to be much more relaxing than 2011 or 2012. Let’s keep our fingers crossed that it will stay that way, at least for the most part.
