As most of you who follow us know Steve had surgery Monday Feb 4th to get the diaphragm pace maker placed in as well as the peg tube for his feeding tube. When making the decision to get the pace maker the feeding tube was optional. I have been wanting Steve to get the feeding tube for close to a month due to some recent weight loss but wanted the decision to be his. With guidance from other pALS (people with ALS) & caregivers & prayers Steve decided to go ahead and get it. Because Steve had both procedures done on Monday he is having some extra pain but I couldn't imagine him getting the pacer without the feeding tube. He has been in so much pain & has not recovered enough from his surgery to want to eat & thankfully the feeding tube has allowed me to get some much needed nutrients into Steve. It's also been an excellent resource to get medicines/vitamins/etc into him as pills are currently (previously were as well) difficult for him to swallow.
For those who are unfamiliar with either of these procedures the simple not so medical way to explain it:
The Diaphragm Pace Maker (DPS) helps keep the diaphragm going & is essentially used to help prevent a tracheotomy in the future. It isn't a cure (because unfortunately that's not here yet) but it does help improve the quality of life. It is like a work out for the diaphragm & unlike other muscles that can weaken when ALS patients workout the pacer doesn't make the diaphragm weaker---it makes it stronger. The wires are connected to both sides of the diaphragm & the wires then plug into a box that helps pump the diaphragm. The box isn't always attached so he has the option to be able to go without it if he wants. The wires connect to a connector holder that sticks to Steve's skin. The wires are covered with gauze & tegaderm to protect the wires. These all get changed every 3 days or so & can be covered to shower.
The feeding tube I think is self explanatory but it helps us pump nutrients into Steve's stomach directly. We began using it immediately and although it's very uncomfortable for Steve right now I'm very glad it is getting nutrients into Steve.
I'm assuming these are going to bring some extra expenses with all the extra things we will need---but I will be on the hunt for the most cost effective way to implement this new change--with help from others & research I will def share whatever the best "cheap"way to stock up on supplies when I find it. :)
So Steve is still in a lot of pain but little by little he is getting better & despite that at this moment I would recommend it to any pALS. Every time Steve has been connected to the pacer despite the initial discomfort he is able to breathe with more ease & the feeding tube goes without saying; I've been trying to fatten Steve up & this helps more than the shakes I've been trying to push on him.
Dr. Kharsarinia at Piedmont is who did the surgery & he & the all the nurses were amazing. Just a heads up to any pAL considering this---make sure you or your care giver talk with the anesthesiologist if your loved one is having difficulties with phlegm. Unfortunately phlegm is a huge part of Steve's battle with ALS and after the surgery he is having some extensive issues but they were able to make sure he didn't have any issues during surgery because they were aware of his struggle with this.
I want to thank everyone for the prayers & well wishes. Also, thanks to my in laws coming to the surgery & keeping me calm & stopping over once a day to force me to take a break. It's been a rough week as it's never easy to see the one you love miserable but I keep trying to remember the end result (I also keep trying to remind Steve of that---but who wants to hear that when they are miserable;)
I will give more updates as I have them as well as any tips we find through this new step. Thanks to everyone that has been through both procedures for giving us suggestions, tips, & encouragement.
Please continue to keep Steve in your thoughts as he continues his road to recovery.
On a complete side note---seeing that we will be sort of "cooped" up for a while don't be surprise if a random "trip" pops up. Y'all know that Steve & I don't like staying home for extended periods of time. ;)
Lots of love.