Well, it was another long day at what feels like our second home sometimes, the hospital. Although, we really didn’t get any answers, we all feel we have a good plan in place.
Sam’s ENT surgeon confirmed Sam still has a Type II Laryngeal Cleft. It’s a little deeper (worse) than he remembered, but that doesn’t mean the cleft isn’t fixable. However, he also made it very clear to us, until Sam’s GI stuff gets figured out, he will continue to stay in the background. He also up-sized Sam’s trach, now that he’s getting to be a big boy. This, and the bronchoscopy, was probably the cause of the more than normal blood he was coughing up after.
As far as his GI stuff is concerned, everyone is still puzzled. They took biopsies of his esophagus, stomach, and small intestines. This is to rule out any underlying issues. Until we hear more about the biopsy results, the plan is to wait and see if the retching gets bad again and then do some other testing. It’s never great to puzzle geniuses, but WHEN they figure out what’s going on, knowing Sam could help other kiddos, makes me happy.
We will hear from Sam’s pediatrician when the MRI results come back. Again, we feel positive the results will be normal.
As you can imagine, or might know, these days are very mentally draining. It starts with being prepared. For how many times I have had to do this, you would think I would remember to buy Pedialyte beforehand. I can’t tell you how many times I have had to drive to the store at nine o’clock at night to get the stinkin’ Pedialyte.
Figuring out Sam’s feeding schedule is the next step in order for him to be NPO, nothing by mouth, before surgery. For Sam, this means nothing by feeding tube, since that’s the only way he eats. Remember, I only taught Kindergarten, so my math skills are sub par. He can only have formula and clear liquids a certain number of hours before surgery. Again, you would think this would be easy for me. Maybe it’s a mental thing, not wanting to see my son sedated and prodded again. Once I have the schedule figured out, it’s setting my alarm for odd hours of the night in order to keep to the NPO schedule.
It’s making sure he has a bath, which is another story for another day. Let’s just say, trying to bathe a toddler with a trach makes for a pretty anxious mama.
That’s really only a piece of how we prepare for surgery. The morning of, is a bit chaotic, but I have to say, we have it down to a science now.
Coming home is a whole other ball game. Thankfully, Sam usually recovers very well. Being mentally drained for me, makes for a couple of extremely exhausting days following a procedure day. Thank you Lord for coffee and home care nurses!
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