Ari is doing great. After several days of not being able to wean off oxygen, he went from 4 liters to no supplemental oxygen in 36 hrs! That is super awesome!
So, what's left before we can get our X-Man back home? (I'm so thrilled to be talking about him coming home!!!!)
Ari is still getting respiratory therapy treatments to help his lungs work. He is still getting various drugs with sedative effects that were used to wean him off the bigger drugs he had to take when he was on the vent. And he is still on a feeding tube.
It's that last one that I'm expecting may hold us up a bit. Amy, the speech therapist, told us yesterday that Ari has several things working against him on his journey to get back on solid food. Ari has dysphagia, and requires all liquids to be thickened. This is pretty common for Down syndrome. Ari just can't coordinate all the steps for swallowing fast enough to keep tiny bits of thin liquids from dripping into his lungs, so we thicken everything to nectar consistency. We learned from Ari's recent surgery that he also has a laryngeal cleft which can cause the same issues. However, Amy told us that when you add having been intubated on top of the dysphagia and the fact that he's still on sedating medications, those swallowing steps are going to be even harder for Ari to manipulate. The danger of it all is that aspirating liquids risks pneumonia....so baby steps and lots of finger crossing...
Still working on those videos...but for now, here's my super happy boy finding easter eggs at his Easter Seals preschool earlier this spring.
Love to all,
Dorothy
So, what's left before we can get our X-Man back home? (I'm so thrilled to be talking about him coming home!!!!)
Ari is still getting respiratory therapy treatments to help his lungs work. He is still getting various drugs with sedative effects that were used to wean him off the bigger drugs he had to take when he was on the vent. And he is still on a feeding tube.
It's that last one that I'm expecting may hold us up a bit. Amy, the speech therapist, told us yesterday that Ari has several things working against him on his journey to get back on solid food. Ari has dysphagia, and requires all liquids to be thickened. This is pretty common for Down syndrome. Ari just can't coordinate all the steps for swallowing fast enough to keep tiny bits of thin liquids from dripping into his lungs, so we thicken everything to nectar consistency. We learned from Ari's recent surgery that he also has a laryngeal cleft which can cause the same issues. However, Amy told us that when you add having been intubated on top of the dysphagia and the fact that he's still on sedating medications, those swallowing steps are going to be even harder for Ari to manipulate. The danger of it all is that aspirating liquids risks pneumonia....so baby steps and lots of finger crossing...
Still working on those videos...but for now, here's my super happy boy finding easter eggs at his Easter Seals preschool earlier this spring.
Love to all,
Dorothy
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