Chinese finger traps are infuriating. You slide your fingers into that scratchy tube and you think, “Wow! There is so much room in here! I’ll bet I can easily leave at any time…” But right when you decide to move on with your life– water the flowers maybe… or do the laundry– WHAM! The finger trap grabs a hold of you like a teenage girl at a scary movie. And it won’t. let. go.
It’s easy to get into a Chinese finger trap, but oh so hard to get out.
The hospital is my Chinese finger trap. Getting here was easy– getting out? Not so much.
I know it’s been a few days since I’ve updated, but for a while we really didn’t know much. So put on your doctor hat. This is a lot of info…
- An MRI to look at his Chiari II malformation and to check his shunt.
- Swallow study
- Bronchial scope and a scope of his upper airway and vocal chords.
- Upper GI video X-ray
- Sleep study
- Bowel X-ray
Here’s what we know:
- Simeon’s Chiari does not look compressed enough to be causing these symptoms. His neurosurgeon felt that decompression surgery would be an unlikely fix, so that’s been ruled out. This is good news. The surgery can be risky for infants and you never want to do brain surgery “just in case.” That’s one you should be sure about!
- They did not detect any structural issues with Simeon’s airways. This is also good.
- Simeon was aspirating when he swallows which likely caused the stridor. Because of this, he needs his liquids thickened so that they “stick” together better and do not shoot off into his airway. So… he can no longer nurse. His milk now looks like pudding in a bottle (ick) but I haven’t heard any stridor since the change. They recommended pumped breast milk with a thickener but this didn’t last long because…
- Simeon now appears to have an intolerance for the dairy in my breast milk. When I eat dairy, he eats dairy and apparently, he doesn’t like it! We noticed blood in his stool and that he was having bowel discomfort and the docs think dairy is the most likely culprit. Now, Simeon is on a non-cows-milk-based formula ($$$). I am still pumping and trying to avoid dairy but they said it would be a few days before it clears from my system.
- This is a biggie: the sleep study showed that Simeon has obstructive sleep apnea.
So, why are we still here?:
- When someone has obstructive sleep apnea, their brain is telling them to breathe but something is obstructing the airway. It differs from central sleep apnea, in which the brain does not signal the body to breathe at all. This explains why Simeon’s chest would move up and down as if he were trying to breathe, but no air was going in. His brain knows he should breathe, but something is in the way.
- During the sleep study, Simeon had numerous short (2-3 second) apneic episodes, during which he could not breathe. The scary thing is that he had one long episode that lasted 12 seconds. That’s 12 seconds of trying to breathe without being able to do so. This episode occurred when Simeon was in my arms and in a very deep sleep.
- The doctors need to figure out what is causing the obstruction. They believe it could be a reflux issue. The brain may be signaling his body to breathe but the airway will not open since liquid has refluxed into the throat and he could choke. To determine if this is the case, Simeon is scheduled to have a GI study done at the beginning of next week.
- If reflux is not to blame, it could simply be that Simeon’s brain stem, which controls swallowing and breathing, may be underdeveloped (this can be an SB thing). If so, the muscles that control swallowing/breathing have low tone. They relax so much during sleep that air cannot get through.
- Basically, they know what the problem is (obstructive apnea) but since they don’t know why it’s happening, they can’t treat it.
- If it’s caused by reflux, it could be treated with an antacid like Zantac. This would be simple and fabulous.
- If this doesn’t work, or reflux isn’t to blame, then Simeon could get oxygen during the night to kind of push air through and help him along
- Or –and this is the scary one– he could need to get a tracheostomy. The docs have not told us how likely this is, but the idea breaks my heart. Since we found out about SB, a trach has been one of my biggest fears.
So, that’s the info. They can’t send us home with a baby who is having trouble breathing, so we will probably be here for another two weeks at least.I’ll post about how we’re feeling about all this soon. Honestly I’ve not been up to it quite yet. The truth is that I’m sad and I don’t want to post about the emotional side of things until I can do it without bitterness. So give me a few hours, or days, and I’ll be back.