I’ve had this post in my drafts since September, but dang if life with three kids (and you know, a job) isn’t a bit time consuming. 😛
The hospital stay was a lot tougher than expected. We checked in a day early so they could “clean out” his bowels. For some reason our check-in was kinda messed up and even though we arrived at 8:30AM and made it to his hospital room by about 9:30AM, the “clean out” didn’t begin until very late that evening. He would be receiving a strong laxative.
Before the clean out, they had to get an NG tube (feeding tube through his nose), which ended up being pretty traumatic. The nurses held him down and pushed the tube in (with a bit of resistance because of his tracheomalacia), but as soon as I picked him up to comfort him he started throwing up phlegm, and the NG tube followed, which caused him to gag. The ladies needed to remove the tube and make a new plan. I continued to comfort Sebastian, while they discussed a bigger tube, etc. He’s so much more aware and was his usual happy baby self up until the NG tube situation. After that craziness he was terrified of every doctor and nurse that came into the room and reached for me in tears. Every. Time.
Then it was a crazy rough night with all the pooping. This was the first time anyone was ever concerned that we had opted for a sideways diaper vs the colostomy bag. Once the laxative finally started flowing a few hours in I found out why. Seb had a major blow out when I finally went to sleep. I woke up about an hour later to an aggressive fountain of feces. After the intial poop fest, I had to change his diaper every 15 to 30 minutes until they took him off the laxative.
Surgery went well. There was a minor hiccup that made it go over the predicted amount of time, but he came home fine and was back to his usual self right quick. 🙂
Sebastian has a pretty big scar where the ostomy was. I’m sure it will shrink over time. The primary concern was that his booty had never experienced poop, so we’ve been using an especially thick diaper cream. He was a champ until about a week later when he had a stomach bug and got pretty raw. The sensitivity comes and goes. At the moment he goes #2 quite frequently, but hopefully his bowels expand over time. They are pretty new. Now only time will tell how the surgery effects him in regards to potty training, etc.
Overall, everything has been wonderful. At times you forget that Sebastian is “medically complex.” He seems like a regular kid who is just a little behind, physically. Mentally he is all there. He is observant, and picks things up really quick. As soon as he was strong enough after surgery, he began pulling himself up to a sitting position, and now easily pulls himself up to stand and sit, over and over. The fact that his balance has improved so drastically shows me how determined Sebastian is. He isn’t standing on his own yet, but he did try for about half a second a couple times now!
Sebastian’s next check up with his surgeon is in January. I’m not super worried about his booty at the moment, other than the amount of times he poops per day. But like I said, we’ll see how that changes over time. I’m more concerned with his tracheomalacia at the moment. Last summer he had an x-ray and it was determined that his esophagus looked completely normal. Now that he’s growing, maybe his esophagus/trachea are not. This is all just me guessing based on visual and audio clues. His esophagus is pretty narrow, and that, combined with his floppy windpipe, have been what gives him issues lately. Gasping for air when his trachea collapses temporarily, and choking on food because his esophagus may not be growing at the same rate as the rest of him.
November 2019 up until now has been difficult, but we’ve come out on top over and over. Fingers crossed that this little man continues on the up and up. And thanks to everyone who is always checking up on Sebastian, our family, and always sending us the good vibes and prayers when we are going through a difficult time. Without your kind words and actions, this family might be in a much darker place.