Ambulance trip through the mountains....

Another early morning waiting at the surgical pavilion so I guess no better time to give an update. We were able to get the Endoscopy moved up from the original January 2026 date!! Yay for some good news as it was looking like he was gonna have to he admitted just to get it done sooner. Today is just to rule out any blockages or other issues, as we are fairly certain he has gastroparesis (paralysis of his stomach nerves resulting in not being able to keep food down) from the pain meds he takes for his spine issues.

Speaking of those pain meds.....we learned a valuable lesson while on vacation recently! Opioid withdrawal is real and quick!

After being told (two days before vacation) it was probably the pain meds that had been causing the GI issues, resulting in rapid weight loss, and not allowing him to enjoy food - the one thing in life he has some control over through all this...Greg decided he wanted to forgoe the pain meds to try to enjoy the food while camping.

So he went cold turkey (without telling me)...while we were camping in west virginia....in the mountains...with no cell service for miles. The initial symptoms were very similar to those we see often anyway so we really didn't think too much into it....then I was awoken at 3am when by absolute devine intervetion, he accidently set the jeep alarm off and the next hour (seemed like days) was the scariest time of my life and the first time I've ever actually had to attempt cpr, his first ambulance ride through the mountains (his dad had to drive to the too of the mountain to call ems, which happened to be fairly close by).

I have to mention the medical center - LewisGale Hospital Alleganey in Virginia...they were AMAZING - check in, the nurses, the doctor, food service!!!! Such a stark difference from what we are used to.....the ER doctor was knowledgeable in all things kidney disease and dialysis and immediately recognized withdrawel symptoms and instead of immediately assuming he was a drug seeking addict, the Dr asked all the right questions, quickly got him a good dose of dilauded and within 2 mins it was like nothing had happened, he was awake, alert and hungry (and they had him a tray of food within 5 mins)......and I was able to breathe again.

Another lesson learned....we are gonna stay home and within cell service till we get to the other side of this!!!!

The summer was filled with more ER visits (mostly due to the GI issues he was having that was constantly passed off as a stomach virus 🤬🤬 and no one seemed concerned with the rapid weight loss). Other ER visits for back pain that we are slowly getting addressed and have transferred care to the Chapel Hill Spine Center bc pain management is a joke with no sense of urgency in my opinion.

Now for the news you are probably all still reading to find out..... potential donor #3 is currently in active evaluation, we hope to have the results/decision from Chapel Hill very soon. We have started the planning process for everything that needs to happen when we get the transplant - which includes who is caring for Michelle, the dog, the house, fundraising for the expenses that come with it not covered by insurance.....and anything that will make this process easier for everyone as we will be in chapel hill for several weeks then quarantined at home for a while after that.

So stay tuned for updates and fundraising activities....and keep praying and sending us all your thoughts and prayers!

We do still have our Amazon wishlist that includes instantcart and door dash etc gift cards that will be of great help when away from home. We will keep this updated as we think if stuff.

https://www.amazon.com/hz/wishlist/ls/21SM1XR24391M...

I cannot Thank all of our friends and family enough for the love, support, prayers and understanding over the last year. We both miss our old "normal" - having the energy to entertain and hang out with friends..... i often feel like we've both been the worst friends and family to everyone, constantly relying on help but being unable to reciprocate.

Those of you who continue to love on Michelle and help us keep things as normal as possible for her are my heros! The playdates, transporting to and from school, and just keeping communication open between the kids for her has been a life saver. I promise when we are on the other side of this I will make up for all of it and do my share!

And our parents....all four of them, this would be so much harder without them. They are the little bit of sanity I have left in all this.

So now that I've written an entire chapter..and Greg is returning from his procedure ..if you are still here, thanks for caring 💜🩵💙