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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I don’t understand why there is such a shortage of medication, my two great grandkids had this awful crud that is going around and the drug store were out of what they needed. Momma just gave them Junior meds like tylanol , to a 6 and 4 year old and kept very close eye on them. They are doing way better now. I am so tired of the stuff that is going around this winter, when will it ever stop.
Kalissa & Craig, I’m so sorry this is happening to Gannon and to your family. I offer my prayers for Gannon and his speedy recovery to getting well. You are amazing parents
I have been praying for Gannon and your family and will continue praying. Sending you hugs!
Your in my prayers.
I am so very sorry! Prayers! ((Hugs))
I’m praying for you. Being a mom of 4, there is nothing worse than seeing your child struggle and feeling like you have to fight to get them the care they need. Toss in a newborn and breastfeeding. You may not feel like it but you are amazing and what a blessing it is that you are a nurse. It gives you a leg up in knowing how to get your kiddo what he needs. Gannon will get better and I know that because I have read your blog (via your mom) for years and I have always seen you advocate for you kids had no matter the situation. Keep believing and catch a few winks when you can. They all count right now.
I am so very sorry Kalissa. There are no comforting words. Sending you cyberhugs and some strength to motor on…which I know you will do. Prayers for you all. Team Kramer Strong.
I am so sorry for you all and my heart hurts for little Gannon. Praying all gets straightened and and he can start healing.
This is awful and I’m so sorry. I’m not going to try to “bright side” you out of this, but I am glad for Gannon that he is in such good hands and has such a strong advocate.
I wanted to send this via e-mail, but couldn’t figure out how to…couldn’t find a way on your Mom’s blog either. She used to have an e-mail button but it isn’t there any more. I have been following your mother for years so I am aware of all that your family has gone through.. I had therapy today and I mentioned little Gannon to my therapist (who is amazing!). She said that sometimes when someone is intibated, something in the throat can be moved out of place. She said you need to find a practitioner of Craniosacral Fascial Therapy. I can’t add a link here but you can do a search. My therapist saw a man who hadn’t been able to eat since he had had a surgery…he also had a feeding tube. One of the other therapists asked her to take a look at him. A simple adjustment of a bone in his neck and all was well. It is non-invasive and very gentle. I am not the one to explain any of this, but look up the Gillespie Approach or Walt Fritz, PT who is a practioner. This isn’t something that medicine will find…need to go to functional medicine (which I love). I pray for little Gannon and for all of you and I hope you can find a practioner…it might be a one-time appt to fix. I don’t know where you can find one close to where you live, but I hope you can! Prays for you & Gannon!
This makes me cry. Continued prayers for you all.
Oh, no, Kalissa! Sorry to hear these latest developments for Gannon. My heart goes out to you guys.