How are we doing: not great.
First of all, Gannon NEEDS A FEEDING PUMP. He spends about 8 hours/day just hooked up to tube feeds. It’s supposed to “free flow” but it is so damn slow. We ordered a pump that will make the feeds go faster, but also the pump comes with a backpack so Gannon will wear his backpack and move freely during feeds. But for now, it just plain sucks. He’s constantly forgetting he’s hooked up and takes off on accident, the cousins were at moms today and they all were tripping on it and maneuvering around it. I think this will be an easily resolved issue but just waiting on supplies.
Second of all, nights are awful. We are up doing meds every three hours, we are hanging feeds at night so he doesn’t have to be hooked up all day, Gannon can’t swallow his spit so he pretty much chokes on his spit and gets terrible coughing fits. He doesn’t sleep soundly at all. No one is getting much sleep these days. I’m going to try having him sit up and sleep tonight and we will see if that helps.
Food and water are still a hard no go. Gannon wants to eat. He tries to eat. He chokes and again, horrible scary coughing fits. We start speech therapy to learn how to swallow again on Wednesday.
Gannon woke up this morning just beside himself in pain, holding his ears and screaming, “take me to the doctor!” I spent 3 hours calling around to Iowa City ENT, our local ENT, and then just even a regular provider in the clinic. NO ONE could see him and Iowa City ENT didn’t even call us back (which of course on discharge we were reassured someone would be available for questions 24/7) so I took him to the ER and YES, Gannon was right, he has an ear infection. UGH. This poor kid.
Now there’s a shortage on the prescribed antibiotic so we had to go to a NEW pharmacy.
I went to schedule his esophagram and swallow study testing he needs to confirm the esophageal tracheal fistula (connection between his esophagus and lungs they found in surgery) and after 20 minutes on hold, they don’t have any orders to schedule the testing.
And worst of all, Gannon is miserable. He’s just so not himself. He’s in pain now because of the ear infection. He’s scared. I’m scared. This is just awful.
Wish I had a happy twist but there’s just no bright side when you’re watching your child suffer.
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