So my tube change last Tuesday went very well! The burning pain at the tube site is gone, most of the granulation tissue has fallen off, and my hickman is working wonderfully again! The only negative is that the Mic-Key button tube isn’t draining my stomach very well. I’m in the process of shuffling around the foods I’m eating to see what will drain and what won’t. I’m really, really hoping I can figure out an avenue to make this tube work cuz it is sooooo much more comfy than a regular PEG style tube! Only problem is it doesn’t always even drain stomach fluid and I’m ending up with a lot more bouts of nausea and extreme reflux. If I don’t soon find a way to get this one working better, I will probably have to give up and go for a swap to a less preferred tube. BUT it will be a simple switch-a-roo if I do end up having to get it changed because it’s just a deflatable balloon inside holding it in. We shall see whether or not this stubborn little thing starts working in the near future! I did learn that getting my old stoma surgically closed is an optional thing and isn’t a requirement if it doesn’t close on its own (which it hasn’t so far). My GI is still in hopes that it is just taking a bit longer because of the condition it was in before we removed the tube, but it isn’t a big deal if it doesn’t close. It’s a matter of when (or if) I get to the point of “I can’t deal with this anymore” and want it closed. Right now it’s just a nuisance and I (and my GI) don’t want to go the surgery route. Maybe one day I’ll get to where I’m just totally fed up with the messy shirts and embarrassing noises, but for now, I’d rather have this than get the surgery to fix it. Still hoping it’ll close on its own though!
Our NY trip went fairly well. The appointments were good...got some useful pointers and some more ideas to try for treatment. We got to do a little site seeing before we traveled back home. Thursday evening we got to go on the Staten Island Ferry and see the Statue of Liberty in addition to more of the NY buildings! It was definitely a gamble with MCAS, but was worth any grief it caused to see those things that I’ve always wanted to see! We left Friday morning and got home around 1am on Saturday. I didn’t have too terrible of a time out of my MCAS on the trip but after getting home, the traveling, and everything I did, came back to haunt me. :/ I’ve been a little achy, but the main issue has been with my dysautonomia (heart rate and blood pressure). My heart rate keeps skyrocketing and my blood pressure keeps plummeting, especially when I try to get up. My home health nurse came this afternoon to check things out and confirmed the issues so my doctor is getting me some IV fluids ordered for home. Usually those help a good bit...hopefully they work their magic again this time! My nurse took my STATS sitting and then had me stand and, within seconds, my blood pressure had dropped quite low and my pulse was picking up speed. I think my body has just had it with the trip plus my feeding pump for my tube feedings has been acting up and not feeding me correctly, so I’m not getting the whole amount of formula I’m supposed to get, either. Hoping to get that straightened out soon, too!
Praise the Lord, the pharmacy that mixes my IV diphenhydramine (Benadryl) bags got a big shipment of my Benadryl and said they’ll easily make it through the shortage! So, sooo happy to hear that news, and I’m very glad they won’t have to take from my bolus supplies to be able to make it through!
Thank you so much to those who have prayed and continue to pray for me and my family! It really means a lot to me! And I apologize for not getting this written sooner, but it has just been a rough recovery from the trip, making it a bit difficult to get an update out.
Taking Life One Bag of Fluid at a Time....