There is a treatement for it and while it is not a cure, it is supposed to slow the progression. However, since the disease is so rare and the symptoms and severity vary with every case, it will be several months before we even know if the treatments are helping. There is no prognosis.
He had to go to emergency in July because he aspirated vomit into his lungs — he bounced between ICU and the regular unit for about 3 weeks. The vomiting was an issue because he can’t swallow (what he swallows goes in his lungs). so they decided to put in a gtube (he had an ng tube since last September)
He seemed to be recovering fine and then all the sudden he wasn’t breathing on his own.
We all had to rush to Calgary in the middle of the night 3 weeks ago - and before we got here they had to put him
On the ventilator. And since he is weak because of the muscular issues , taking the tube out has not happened - they tried once and he couldn’t breath enough on his own, he was struggling so they intubated again.
Now they keep going back and forth saying they’re taking it out and then they don’t. I think they’re at a loss. They don’t know what to do next because they’re pretty sure if they pull the tube out, he won’t make it.
Breanna has been here since September 2017 and has lived at Ronald McDonald house since then. Previous to being admitted in July he did spend a bit of time discharged and things were going well so we only came up once a month or so.
But for the last 3 weeks we have tried to have someone staying with her while all this is going on. Thank you.
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