Well, we have Gannon home but the Gannon that is home is not the Gannon we sent to the hospital. It’s okay…we’re thankful for what we have but we are hoping he will get back to normal.
He has an Ng tube and does all his feeding that way. Gannon isn’t swallowing on his own yet.
He is totally not himself. He’s… low energy. He’s whiny. He’s hard to please. He doesn’t manage his emotions. He’s not content. He’s hard to understand when he talks. He is not the easygoing guy he was.
It takes three hours at this point to do a feeding and he needs them four times a day…YEP, 12 hours a day just to eat. By the time one feeding is done, another needs to start.
Worse is that Gannon is very traumatized each time a feeding starts. He cries and fusses. We have tried explaining that it’s just a feeding and he doesn’t have to have the tube inserted again…just that his shakes have to go down the tube. He hates it. His fear makes it miserable for everyone.
We still need to try to get him to swallow and he can try and eat food even with the Ng tube but Gannon even with his best efforts, can’t swallow. We’ve bribed him with so many things…no luck. Kalissa even tried to get him to eat his favorite ever Chick-fil-A sauce but he doesn’t swallow it. He voluntarily puts it in his mouth. He voluntarily tries…but it doesn’t go.
We are told this is all temporary…but, we still have to plan for the worst just in case.
There are a whole host of things that are being worked on.
-He needs a medical equipment place. He needs a pump as feedings take way too long.
-How does he get back to school? The feeding stuff needs to be figured out first. There is a backpack his pump can go in but all of that needs a doctor’s orders. So that’s all called in and now the wait for supplies is on.
-Will he need a nurse at school? Can the school nurse handle this? How does all of that happen?
-follow up appointments need to be scheduled and Kalissa is off maternity leave starting in January.
In the meantime…
-Their dog has cancer and has to get a cancerous lump removed. She goes to the vet today
-We all feel like we are not giving Kalissa’s other boys, Anders and Carver, as much attention
-Kalissa is sleep deprived
-Christmas is around the corner. We have nothing done.
-We all struggle with “are we babying Gannon too much?” or “are we not tough loving enough”. He is so incredibly needy.
-we encourage Gannon to try food but then he has cough fits…but if we don’t try to encourage him, he’s never going to be able to swallow and we’ll be at this forever.
We never feel like we’re doing the right thing.
Yesterday morning Kalissa called me and I had to go to their house to help her. It was just too much. Later in the morning, Kelli had to go over and help so Kalissa could get out the door and to the doctor. It turns out Gannon has an ear infection on top of everything else.
The poor boy just can’t catch a break.
We’re all on the struggle bus. I’m so impressed with Kalissa…Craig too. They are doing a great job…but it’s a really hard job with few moments that we feel like we really are doing the right thing. It’s all just a lot of muddling along. There is a ton of trial and error in this as it’s new uncharted waters…none of us have done this before.
My heart goes out to parents who deal with these kinds of things on a daily basis. Whew…we had no idea. We are so lucky that we are told this is only temporary…for many, it’s not. We are doing the best we can and learning so much as we go.
We really appreciate any thoughts and prayers you can send our way. We were so naive went we thought all we needed to do was get home and things would be so much better. Yes…it is better but not the better we anticipated.
As always please check Kalissa’s blog for the very latest. You can find that link HERE.