Every 17 seconds I can hear the whirling of the pump.
For 14 hours of the day, Rae’s movement is closely followed by an IV stand and a small tube she can’t stand being behind her ear.
Things went well yesterday. The GI procedures went well and things looked good, we’re just waiting in the biopsy results.
When she woke up, she was pretty mad, to put it lightly. Her arms were in restraints, keeping them straight so she couldn’t pull out the tube. Plus she was starving, and she still had to wait until we had an X-ray to eat. The X-Ray was to make sure the NG tube was in the right place. Apparently it can be put in wrong and go in their lungs, that totally instills confidence in me that I should be able to place the tube on my own at home…
We got up to her room, finally got some food in her, then met with a few doctors.
She’ll be seeing her GI, a nutritionist, a geneticist, a primary, and meeting with the medical supply people while we are here.
Big S came for a little bit last night, but for the most part it was me and my mom yesterday. Big S stayed til Rae was asleep, gave me a foot rub (Seriously. He’s an amazing husband) then had to go home since he has work at 7 AM.
I’m still here. Listening to the loud whirling that dominates over the sound of her breaths, the usual sound I hear this late. I guess I should get used to it, the plan is to have the tube several months. My GI is amazing and is very closely monitoring her while we figure out the best way to make this work. We are hoping to plump her up, then slowly wean her from the feedings. If her body responds well, and she continues to gain, then hopefully she’ll be off the tube for good. If her body doesn’t do well without the tube we will consider having a more permanent port put in and continue supplemental feedings.
Right now she’s on 45 ml an hour (about an ounce of formula) from 6 PM to 8 AM. The goal is to have only 50% of her calories consumed through the tube. She can eat and drink normally with the tube in, which will stay in 24/7. I’m already concerned we’re going to have to up her NG feeds. They switched her formula from Puramino to Elecare, which are essentially the same. They’re both hypoallergenic, pre digested formulas, but since Rae’s body didn’t thrive of the Puramino, we are hoping the Elecare may make a difference. But she hates the taste and refused to even drink an ounce yesterday. I’ll keep pushing it, but so far she is hating it (she’s crazy, it’s vanilla flavored and smells 200% better than her Puramino).
On a very, very good note, WE GOT BACK GLUTEN!!! This opens a lot more options for Rae food wise. If wheat goes well, we may add back in dairy and soy in a month or so. I cannot even tell you how happy Rae was to have graham crackers and pretzels again.
What a joy!