I think it's about time for an update on Mr. Noah.
In November Noah had his adenoids removed and Botox injected into his salivary glands by a wonderful ENT doctor at Texas Children's Hospital in Houston. It was a relatively quick out patient procedure so we drove down the day before and spent the night. Then we got up early the next morning to get to the hospital and we were headed back home by around 1pm. The surgery was without complications and he was only back in the OR for maybe an hour. It was so fast! Afterwards he was in a good amount of pain I'd say so he basically cried for the entire 3-4 hour trip home. That part was rough. But he recovered really well in the end.
Then about a week after his surgery he started vomiting which was something very new and different for Noah. Vomiting is very dangerous for someone with an unprotected airway like Noah has. When a healthy person throws up, their vocal cords close off the passage into the lungs. But with Noah who has floppy cords, they don't always shut properly which puts him at a greater risk for aspirating his stomach contents which can lead to an infection in the lungs like pneumonia. Pneumonia is especially dangerous for Noah because he has PMD. PMD causes weak muscle tone so it is harder for the lungs to squeeze out and cough up all the mucus that gets stuck in there from an infection. Respiratory illnesses are one of the leading causes of death in PMD patients. Needless to say I am terrified every time Noah gets sick which is why I work so hard to keep him healthy. Anyway, back to the vomiting... Hooray!
So after the surgery Noah started with this throwing up business. I tried every single thing I could think of to make it stop. I would tweak his feeding times or feeding volumes or whatever else I could think to do. And sometimes it would work for a few days at a time and then he would go right back to throwing up. After a few months of this I finally had to resign myself to the fact that Noah is just going to throw up. I also had to explain to his nurses that this is just his new 'normal.' There is nothing wrong with him, he's not sick, he doesn't have reflux, he just vomits.
Sometimes it is due to anxiety. Every time we get into the car with Noah, he throws up within the first 5 minutes. If he is too over stimulated he will make himself throw up. It is something he can do and something he can control. I relate it to a child throwing a fit that will bang their head on the wall. Yes, it hurts and it's not fun. But that is the only way that child knows how to express himself at that moment when he feels very out of control. The same thing happens for Noah. Throwing up is not fun. It is messy and stinky and occasionally requires us to do trach care AGAIN if he gets throw up on his trach ties or dressing. But that is his way of telling us that he is upset or doesn't like something. We are working very hard on other ways of communicating but it is a slow process.
Some days he does great and he doesn't throw up at all! Other days we are constantly on our toes because he is gagging and retching all day and we are just waiting for the throw up to come. But it's just one of those things that we have to deal with now and we are all getting better at reading him and learning his cues as to what will set him off.
Within the last two weeks Noah has been showing some signs of seizure activity. Noah is on a medication for seizures called Trileptal. He has been taking it for over a year now and we haven't seen anything remotely seizure-like since then. But a little over 2 weeks ago he had a big break through seizure. Our nurse for that night was out sick so it was only Nathan and I here when it happened. And it was scary. Initially I didn't really know it was a seizure and since he doesn't have them like ever it honestly didn't even cross my mind that he was having one until it was already over. Let me just say that it is not a fun experience to see your child with an unresponsive stare and have their face turn purple for 30 seconds because he stopped breathing. We gave him some oxygen and eventually got him to calm down by holding him and rocking and singing his favorite song, "Twinkle, Twinkle, Little Star." Then he fell alseep hard for the next 5 hours. That is called the postictal phase. During a seizure, the brain and every muscle in the body are working in overdrive so it is very normal for the person to fall asleep or be very "out of it" after the seizure is over.
Since then, he hasn't had anymore episodes of that magnitude but we have noticed a few different things that could definitely be associated with seizure-like symptoms. Luckily we already had an appointment with his neurologist scheduled for the beginning of June. I'm not really sure what the doctor will want to do at this point but I'm at least glad for the opportunity to speak with him face-to-face again. I think it's been about a year or close to that since we have been to his office.
Other than those few things, Noah is doing great! He is really coming along with all of his therapies. He is doing really well learning how to roll from his side to his back as well as learning how to activate his toys more consistently. We are also working with him on making choices. When we ask him what movie he wants to watch we will hold up two movies, one in each hand. We show him both movies and which ever one he looks towards is the one that we will put on for him. Eventually I want to have pictures printed out of the things that we do almost every day so we can show him the pictures and let him decide. For example, have a picture of his wheelchair and a picture of the couch and let him decide where he wants to sit. I am really hopeful that this will be a good way to communicate with him or at least be able to give him some control over what he wants to do.
He is also turning out to be an excellent big brother. When we first brought Savannah home, Noah wasn't too sure about her. He usually made what I call his "sour pickle face" whenever she was near him. But now I will lay the baby in bed with him or next to him on the floor and his face just lights up! I can tell that he loves her so much. It really is the sweetest thing to see.
That's all for today. See y'all tomorrow!
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