short update

I know I am not usually one to be short and sweet on here but a lovely cold is kicking my butt right now so here’s just a quick update.

We met with ENT (Ear, Nose & Throat specialist) on Friday and have decided that while Wyatt’s stoma site is functional from a ventilation standpoint, it is definitely not normal and needs to be reconstructed at some point. Doing the procedure has its drawbacks of course as it will be similar to having a new trach in regard to cleaning and recovery time and it will require 3-4 days of hospitalization post surgery. However, the current “Panhandle” shaped stoma site (vs a normal round appearance) is creating an air leak that shouldn’t be there and the two areas of additional skin growth around his stoma site often get irritated. The way the procedure works is that after anesthesia kicks in, they would intubate him through the mouth to get a clear view of the stoma. They would then use the existing stoma but tighten up the area around it as needed, preserve the good tissue as much as possible and remove the excess skin growths. After surgery of course, there will be stitches again and the first trach change I would presume has to be done by ENT before discharge. There is no urgency to doing the procedure but we feel strongly that it needs to be done sooner rather than later and having the excess skin removed should provide more comfort to Wyatt and reduce the risk of infection and inflammation. The lead time is approximately 4-6 weeks so most likely it won’t get scheduled until June. Since Wyatt also needs his yearly MRI of the abdomen and chest done with sedation, I’m going to try my best to push the hospital to do the MRI during that same hospital stay.

Some other updates… While Wyatt has had some prolonged episodes that ended with seizure like symptoms on occasion, probably due to the prolonged lack of O2 to the brain, I do have some great news. Purely by accident I discovered a way to prevent 90% of his episodes. We had already figured out that most of his episodes are behavior linked by now. So one day I got so frustrated with him knowing he was doing it on purpose and he had already shown me two back to back full blown episodes that I decided screw this, he’s not going to rule this house. So I started bagging him as soon as he started to cry and made that face like he’s trying to stiffen up and throw yet another episode. And what do you know, that little stinker stopped crying. His skin still turned a little blue but he didn’t go below 60s on his SATs, whereas his bad episodes can go well into the 10s, even to the point of reading 0. So that was a huge victory for Mommy and an eye opener that we had finally found a way to win this battle of willpower with him. The game was on from that point forward. Now he has to go to bed and settle down by himself even if it means we are bagging him for an hour to prevent episodes before he finally gives up and goes to sleep. That look on his face was priceless the first time we laid down the law and put him to bed still awake. He gave us such a pity look. He knew exactly what he was doing and we had to prove to him that we are just as stubborn. Two weeks into this method of madness, he is getting the point and even has had days now when he will go to sleep in his own bed without a fight. That said however, the stranger anxiety is in full swing here though. He will not go to anyone else but me and my husband right now. We can’t dare have a nurse sit next to him without one of holding him and he sometimes even throws a fit for Grandma. I hope that phase passes fast because it’s rather annoying. And just to show how much Wyatt needs to be in charge, yesterday he proved that when he wants to he can eat by mouth just fine. After all the struggles and failed attempts to get him to eat by mouth over that last few months, yesterday he completely voluntary took 20 bites of baby food from a spoon by opening his mouth on his own and even signing “more”. He had never done that before. And he did all that despite the fact that he’s fighting the same cold as me right now. Wyatt, Wyatt, Wyatt. I can’t wait to see what a handful you will be once you can actually walk and sign a few more words.