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Seems like with Mary Elizabeth’s condition, we experience quite the rollercoaster ride. And though she’s come so very far… we know it’s been quite the journey!!! Three steps ahead, Two steps back and so forth.

By far, the trach removal was one of our biggest highlights… so of course, you had to imagine that there was a chance it wouldn’t be completely smooth sailing from there on out right? We were hopeful… but nonethless we’ve hit a challenge. You see, ME’s breathing has been great since her trach was removed. Her trach hole was stitched closed and she did well with that too. Oxygen levels are and STILL remain well. For that reason, we are very blessed and relieved. However, at night – her breathing has not been how it should be. It seems as though her body still wants to breathe through her trach hole- you know, the one she doesn’t have. THAT would be the problem.
(I mean it’s great that she has good oxygen levels but she’s just working extra hard to have it!).

For 5 1/2 years Mary Elizabeth was breathing through this hole in her neck and her body just hasn’t adjusted correctly to that when she’s in a deep deep sleep. Her neck will “suck in” so to speak and her heart rate is a little elevated instead of “at rest” while sleeping as it should be. She is completely exhausted at this point. It has gotten worse because the past week she has been congested, so between the two – it just hasn’t been easy on her.

ME hasn’t napped since she was 2 years old. She’s always a ball of energy, the one that takes forever to fall asleep at night- a real night owl. This same little girl has been falling asleep at the dinner table. So yea, it’s a concern. And let’s not forget- mom and dad become exhausted when their daughter is. So… We contacted her team of doctors in NYC and we spoke with other moms online and did our own research.

ME needs a little help getting adjusted, and we have faith that it will all work out just fine, as she doesn’t even do this all night long, only a portion of the night. She will have a sleep study done soon. We are going for a consult in NYC on Thursday, February 24th to discuss and arrange it. While we don’t know truly what the outcome will be, other parents online that had similar stories had their children end up on a CPAP machine for a while and eventually got weened off of it. It’s a machine that is often used for sleep apnea patients but in this case it will retrain the body to breath through the correct path/passages.

So anyway, that’s that… we will be updating on when the sleep study is and then the results of the sleep study as we get them. In the meantime, as always- keep her in your prayers 🙂