Tag Archives g-tube


Ava was discharged from CCHMC 🙂  Her EKG showed sinus tachycardia, and she now has to go to the cardiomyopathy clinic regularly and get echos every 6 months. She has to have an echo within the next week or so.  The cardiologist explained that since she has Mitochondrial disease, she has to be followed closely by…

She Needs a Beak

I’ve been a terrible blogger lately. I’m sorry. Ava had a week of appointments this week. We have successfully restarted G tube feeds again. She is continuous 21 hrs a day with one mini bolus. The trick is keeping her blood glucose up, and we are still walking a fine line with that. Some of…

Keeping Up

I know I’ve been MIA lately. Things are busy with back to school for Dakota and Christian. Ava’s appointment schedule is tiring. Today was hematology clinic. This specific doctor was one of the doctors that cared for me when I was Ava’s age with Neuroblastoma. She’s treating Ava for her ANC counts and anemia. She’s…


We saw GI today, and he’s on board with the other doctors on getting the ball rolling with the G-tube. Ava will get a PEG tube at first, then go to a low profile (AMT) button 12 wks after PEG placement. She’ll stay in-patient for 4 days or so. I’ll let everyone know when I…

Feeding appt update

Ava weighed in at 20 pounds yesterday, so she’s still losing weight. Her growth chart is plunging and everyone is concerned. She isn’t getting taller either. Her entire growth is stunted right now. We only saw ENT and nutrition, but I think they had some great ideas. We are really trying to avoid a g-tube….