The conference went well this morning. It started off a little negative, but quickly turned positive as the doctors there realized that we weren't attacking them,but rather seeking their input combined with that of her other specialists. Dr. Pauli asked some of the same questions we'd been asking all week, but they suddenly had answers when he asked them. We were able to develop a plan to hopefully help Olivia's reflux and in turn hopefully get her to start eating more. As soon as the meeting was done we went to x-ray to have an upper GI study done to check the malrotation that they thought they saw in the same study in November. While we were there they also did a swallow study, which went really well! We haven't heard anything back from that yet. We are also starting her on Erythromycin to help with the her motility. If that works, then that's the end of the plan. If it doesn't work then we'll have a GJ tube placed. That tube will go in the same place as her G tube but it will have an extra tube on the inside that will do directly into her intestine. That will require her to be on continuous feeds from her pump at all times, a pain in the butt for us, but hopefully helpful to her. If that works then they will schedule her for a Nissen. If it doesn't work they will put a G tube back in and we'll be back at square one, and looking at other causes.
In addition to the meeting today Olivia has shown a lot of improvement. She is back down to ther normal oxygen, and they are working on decreasing the steroids that she's on. We're hoping to be able to go home tomorrow or Saturday.
{Spring 2023}
1 month ago
3 comments:
It's always helpful to get everyone on the same page. Hopefully this will be the beginning of a long healthy road for Olivia. She's such a little trooper! Glad she's doing so much better.
Glad the conference produced some plans - and that the swallow study went well! So glad that the little smile bucket is doing better, can't wait for you guys to get home and back to life - and let poor little Olivia crawl around on the floor!
Glad to hear there is a plan now for Olivia and things can get better. Happy that you will get to go home soon. My sister had a GJ tube because of her CP and wasn't gaining weight. It really helped her but was a slight inconvience. If you get the GJ Tube make sure they have you set up for portability and that they teach you how to dissolve a block in the tube so her food will get thru. Several times my sister got these. But that was 15-20 years ago so things might be different. Also if you are to put meds thru the tubing it needs to be done at a slow pace or when you remove the syringe it will come spraying out. Just some tips. Good Luck!
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