Evan Mettie's Journal
Written Mar 5, 2014 4:40pmEvan had an AWESOMENESS GOOD TIME with WWP at the Harlem Globetrotters (like my wording) on Feb.23rd. He was all smiles, we got to meet new people, hang out & go to dinner with everybody. By the time we got to dinner he was pretty much wiped out! He was so tired from sitting in his chair all day he developed some toning & sore muscles. I thought after a day or two it would go away, Not sooooo much, by Thur. it had developed into a full blown Paroxysmal Autonomic Instability With Dystonia (PAID) episode or as I call it, Neurostorming.
On Saturday his temp would jump around, 102 then 104, so I thought a bed bath would cool him down, wrong! His temp jumped up to 106.9, no more baths for this guy. Needless to say it's been an ugly several days, I thought on Sunday everything returned to normal, wrong again! Last night it started all over and again today the crazy high temps We did go to the ER on Friday just to make sure there wasn't an underlying infection, everything was negative, so home we came. I figured we could do almost everything the hospital would & be much more comfortable doing it. But I do miss the cookies at the espresso stand :)
And right now after only 2 hrs of sleep I'd give anything for a Doctor to come visit and give medication orders, I'm giving him everything I can and nothing seems to be working. So, to the big guy upstairs, we pray for intervention, please bring comfort to Evan, peaceful rest and healing so he may continue your good work, AMEN!
Written Jan 20, 2014 7:53pmSEAHAWKS!!! Just think, 8 years ago the Seahawks were going to the Superbowl and we were going to be watching it in Evan's ICU room at Bethesda. We had to laugh because we felt like we were the only supporters on the east coast and we couldn't find any Seahawk memorabilia to put up. Luckily, Senator Murray happened to stop by to visit Evan and within a few days we had Seahawk banners & flags all over Evan's room & hanging out of his door! The day of Superbowl the ICU took on an air of FOOTBALL!!! the nurses break room turned into food central, there was a sense of jovial excitement, it was a welcome break from the day in day out stress of caring for our wounded warriors. Evan was still in a coma while we watched the game, but for several hours we could pretend he was awake & rooting on our team.
We ESPECIALLY look forward to this year's Superbowl because Evan is with us and he will be rooting his team on!
Written Dec 29, 2013 6:27pm
Evan's finally finding some relief! Monday 23rd we went to Watersedge Pain Clinic and then that afternoon to Infusion Care where they increased his Baclofen pump and replaced his pump med from Gablofen to Lioresal, both are Baclofen, just different brand names and each works a little bit different. You usually start seeing a difference in 24-72 hrs, we didn't see one until Friday and then it was like Evan just relaxed, his arms & legs went AHHHHH, no more spasms! And he slept...
Today is SEAHAWKS day!!! Evan's got his new Seahawks socks on, I've got my T shirt, we're ready.
Monday Evan is going to get his Baclofen pump checked for any abnormalities by doing a bolis of the med and waiting 2-3 hrs to see how it effects Evan. Then they will schedule a dye test on the pump. We don't know, it could just be the location of it that is causing issue's and triggering the Neurostorms. And it may not be the pump at all. Hey, maybe I'm the irritant! Gee, couldn't be...Lol