Sam Update

Sam continues to keep all of us on our toes, but he’s had a really good, very healthy, last couple of months.

We did have one trip to the Children’s ER in November, but that’s only because we don’t have any other place to go. Sam decided to eat the heck out of a purple colored pencil, yes folks, a colored pencil. You don’t eat food, but you’ll gnaw on a colored pencil?! My thoughts exactly. I had no idea he was even chewing on anything. He was standing in front of the TV, watching who knows what. He coughed. Like normal, I went to suction him. Oh boy!!! Purple colored pencil everywhere! And then the scary part. Purple was literally spilling out of his trach. Not good folks! I had to suction him a good ten to fifteen times before his secretions were clear again. Kinda gross, I know. There were actually small specks of purple colored pencil in the suction tubing. Oh great. My first thought, aspiration pneumonia. After we finally suctioned all of the purple out, Mr. Superman went about his normal mischievous behavior acting as if nothing had even happened.

I went to bed mentally preparing myself it could be a long night. Nope. He slept great and showed no signs of aspiration pneumonia. Whew. It wasn’t until his speech pathologist at feeding clinic reminded us of the three day a week antibiotic Sam is on, which has been a God send for Sam this past year, that it dawned on us. Oh yeah, it’s highly likely the antibiotic kicked anything that may have tried to brew. Thank goodness. Aspiration pneumonia is not pretty.

The next day, I wasn’t worried at all. One thing I’ve learned about aspiration pneumonia is it comes on very quickly. Sam’s doctor still wanted him to be observed and x-rays done to be safe; hence, a very long, eight hour trip to the Children’s ER. It felt a little silly to me, but I can’t complain about an overly cautious doctor, right?! No, we are incredibly thankful for this doctor who has saved Sam’s life more than once.

Feeding therapy…

We’ve been going to feeding clinic for a couple of months now. This is a new, scary, and fun thing for us because it’s the first therapy we’ve been able to do outside our house. For the past two years, all the therapies have come to us, which has been and still is, awesome. Although there’s something about taking your baby, yes, I know he’s a toddler now, just let me have my moment, out in public. Sam is so darn friendly, waving at every person who walks by him. I feel like I have to say hi to people for him since he doesn’t have a voice. Most the time he’s just waving and no one sees him. Once they do, they can’t resist his sweet smile and the big, “Hello, I’m Sam.”, wave. Okay, okay, onto feeding clinic.

Although, he has a long way to go, he has made a lot of progress. In the past, even when Sam would touch different foods, he would instantly gag. Up until a couple of months ago, if food even came near his mouth, he would gag and end up needing lots of suctioning. Now, he rarely gags. In order for Sam to even be able to do a swallow study, he has to be able to drink an entire med cup (like the cup you get when you buy children’s ibuprofen or Tylenol) of a thickened liquid. Let’s just say, although he’s come a long way, he’s not even close to that. He’ll get there!

Because of the aspiration episode, Sam’s ENT has decided to do an endoscopy instead of waiting until he is able to do a swallow study. It’s kind of a bummer because it’s another sedation for Sam, but it will give us a concrete answer if the last surgery worked or not. It will tell us if the hole in Sam’s airway has been repaired.

Two years ago today, we brought Sam home with us for the very first time after living in the hospital for seven months. The word that comes to mind from two years ago…terrifying. I remember thinking… There’s no code blue button at home. There’s no button to push where thirty something people will immediately rush into Sam’s room and save his life. His life is now in our hands. I am not a doctor. I am not a nurse. I am just a mama, but we’ve got this. When Sam was seven months old, developmentally he was like a newborn. He couldn’t lift his head on his own and only moved his arms legs. Most didn’t think Sam would make it out of that hospital. Not only did he make it home, he’s thriving! He is now walking! He’s actually been walking since the end of November, but I realized I never posted this super exciting milestone. A milestone two years ago, that was not promising.

That was a bit long winded!

I guess I shouldn’t have bragged how healthy Sam has been. I’ve been working on this post the past few weeks or so, excited to publish it on his anniversary. And now, I’m sitting here, sleep deprived, with a very sick little boy, hoping and praying we don’t have to spend his anniversary in the hospital.

 

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