Here’s the Gannon update – I know you’ve all been wondering. Thank you for the comments, messages, and emails. Also, thank you again for the “coffees” and Venmos and letters and cards and gifts. We’ve just been floored by how kind people are. It’s really lifted our spirits!
Gannon hasn’t made much progress this week. Monday started out as a normal day until Carver came home from school with a fever and a cough. The next day, Gannon came down with a fever and a cough. We ended up in the ER in the middle of the night and Gannon had some croup. We got steroids and that cleared up pretty quickly. Usually he needs a couple days of steroids to keep the croup away but he didn’t need them this time! You can read about our ER trip on my mom’s blog here: https://www.joscountryjunction.com/i-spoke-too-soon/
By Wednesday, Gannon was a little worse and Carver was a little better. By Thursday I was starting to get sick. By Friday morning, Carver was back to himself but the rest of us were pretty miserable sick. I feel like mine was pretty mild in comparison to Gannon and Craig. Gannon is fever free as of this morning, same with Anders. Anders just has a cough but other than that, no runny nose and no fever, no trouble breathing. Craig wins the sickest award today but I think the rest of us are doing better!
The boys are giggling in the bath tub right now as I type this. Craig is playing Xbox and Anders is napping. It is a pretty low key Christmas Eve. Craig and I haven’t even started wrapping presents but plan on making a fun night of it after the boys go to bed.
Anyway, back to Gannon, because of the virus and the blizzard, he only had one speech therapy session this week so we haven’t made a ton of progress and he hasn’t really wanted to eat much. We’ve mostly done tube feeds the last two days because he’s been so punked out. I thought maybe he could have his tubie out by Christmas but honestly, I’m okay with leaving it in. Gannon used to take medications like a champ and now he’s so terrified of meds so I need the tubie to give him Tylenol and Ibuprofen. This is something I’d love some advice on – how to get him to take medications – chewable or liquid – again. Maybe he needs some therapy/counseling to help work through some of the medical trauma he’s had.
Next week we are headed on a little family vacation to a waterpark with all my siblings and some family friends so he will miss speech therapy again. He will have it on Thursday and Friday though. Then we are back to Iowa City the next week for a follow up and to investigate that possible fistula between his esophagus and his trachea. Then back to Iowa City again the next week for more testing and follow ups.
I’m still worried about Gannon’s esophageal motility – as is our speech therapist. For example Gannon LOVES corn dogs. He takes a bite of corn dog, chews it and after a minute or two ends up spitting it out in the toilet. Then he comes back and takes another bite, repeats. I don’t know if the corn dog ever gets to the swallow part or if it gets part way down? It reminds me of patients I’ve had in the ER with food boluses.
So again, I’m not in any rush to get his tube feed out. I would prefer Gannon to not need his tube feed for several days before I would feel comfortable having it taken out. Right now he’s scheduled to get it switched out for a new one on January 12th so we will just see what happens.
That’s the Gannon/Christmas Eve update. Northeast Iowa is currently getting cleared out from the blizzard so no plans on going too far. In the meantime, please enjoy these adorable pictures of Anders and his wild hair. I gave him a scalp treatment to help with his cradle cap and this is what happened – Craig thinks he looks like the baby Grinch!
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