So as we are in the hospital we finally found some stability and answers so I finally feel the energy to allow the words to come.
So I wanted to share with those new to our story some of Steve's ALS story. If you've followed us a while thanks for being with us along this roller coaster ride.
So Steve had been experiencing symptoms for almost 5 years before diagnosis. He was misdiagnosed with every single symptom until the falls started. So once Steve received that diagnosis the beast took over. Here is a brief timeline.
August 2011 diagnosis
July 2012 After months of falling Steve finally accepted the wheelchair
Feb 2013 Feeding tube was placed as Steve's swallowing was beginning to get worse and he continued to loose weight. The feeding tube got a terrible infection 2 days after placement.
*This was the start of infection phase.
From there out, UTI's every other month.
May 2013 We came to the hospital for pneumonia and after Steve died on me twice he ended up with an emergency tracheotomy.
June 2013 First diagnosis with lung infection Pseudomonas & MRSA
*This started our Bug phase.
June 2013 Steve also began to vomit after meals where we spent a long 2 months every other week in the hospital because Steve couldn't keep food down and would aspirate and end up with pneumonia and of course pseudomas & MRSA were on board.
August 2013 after 2 months of fighting with the insurance company Steve was 67 pounds and unable to even tolerate water. I took him to the ER while refusing to go home without IV foods TPN,
*This started TPN phase.
Feb 2014 Steve made the decision to go on the vent full time after a rough few months with breathing.
*This was the start of progress phases
After this the TPN and the vent helped Steve immensely, obviously to go from 67 pounds to 155 * probably 10 of those pounds being edema.
During this timeline at each phase we encountered different doctors telling us that Steve was dying and there was nothing they could do for us. We encountered the several stories that went something like, "Well, Steve probably won't fully come back from this...."
Well, he did thankfully for so many reasons, but one important reason was finding Emory Johns Creek. We sorted through doctors to build us the best team. Including: Intervention Radiology who are the best in the state to help with feeding tube & picc line, Infectious Disease doctor, Pulmonary, , Gastroenterology doctor, Urology doc, Primary Care doctor, an incredible pharmacy team, and a great hospital with skilled and incredible ER and ICU staff .
So the more we come to the hospital the more complicated we've become. From holes in stoma, comas, stomach acid leaking from the stomach, to building antibiotic resistance, to sepsis, and yeast infection in the blood.
Today I was expressing my gratitude to pretty much everyone we saw because along the way a lot of people have given up on us but the Emory Johns Creek staff and our team we've built has never given up on us. Essentially Steve's one of their most long term complicated patients and they never give up on us. They will do everything possible to help us to the other side of each hurdle.
One of the doctors replied to my thanking them with a sincere, "We aren't doing it alone, your love heals him too."
From staff bringing me meals, gifts, and just coming to show us their love, to them working diligently to help us figure out each new complication we bring. It's a blessing.
I hope everyone can find as supportive of a team when facing an awful disease, like ALS; and all the complications it brings with it. If you've been told by a doctor that there was nothing they can do for you, find someone else. I promise good doctors exist. I know because we have a handful of them.
If you want to know more of our journey in detail make sure to purchase the Hope for Steve documentary that will be available May 3rd on Amazon, iTunes, and Barnes & Nobel. Also, stay tuned for my book hopefully coming next year. :)