The baclofen reduction scheduled for today is delayed because of sloppy staff work, so I’m told. The order was never sent in to the agency that comes to our home and programs the pump. The reduction is now scheduled for next Thursday, April 5. It’s no big deal in the larger scheme of things, but it’s no less annoying.
To recap, the next reduction (on April 5) will take Ryan down to 45 mcg. After this, there are just two left. The first will take him to 30 – 35 mcg, then we’ll trial stopping the medicine entirely. We should reach this point in May, but I have no intention of removing the pump (surgically implanted in his abdomen) for several months. I need to know, with absolute certainty, that he no longer needs it. During this trial period the pump will deliver small amounts of saline. This is only to keep the pump running and prevent it from seizing up.
I remember the day Ryan first had the pump implanted. It almost didn’t happen for two reasons. First, he was storming (you can click the link, but the best way to describe it is the mind and body in chaos)… hard. His temperature was almost 107 degrees and we were doing everything to bring it down. He was laying in, and on, ice while morphine and sedatives were being pumped into his body. It was January, but we had the room’s air conditioner pegged on the coldest setting and a fan blowing over him. After many hours (sometimes these episodes would last six hours) he finally was stable enough and we moved him to the stretcher for transport to surgery.
Now, the second reason… as he was just strapped in to the stretcher the Doctor came in and told us there’s a problem. He tells us our insurance hasn’t approved the surgery. What pissed me off was how he said it. Just as casually as telling me he misplaced his pen. This was the first time, of many to follow, that I laid into a doctor. Sure, I knew it wasn’t his fault precisely, but this surgery (ordered ten days earlier) was under his direction and he ultimately needed to make sure everything was in order. Mainly, I didn’t believe him that insurance denied it. I hammered him with procedural questions, and starting noticing holes. Within a few minutes I told him, more than asked, “The insurance was never approved because it wasn’t submitted by the Case Manager, right?”. All he could do was respond with a sheepish “yes”. I calmly told him I will deal with him later (oh, and I sure did), but he needs to call our insurance personally — NOW — and get it approved.
It was Sue that pulled me back to focusing on what’s important when she pulled out every credit card, debit card, and checkbook we owned and handed toward the doctor. She told the doctor, point-blank, charge our credit cards because he’s going to surgery. Then the threat came… “or else you’ll need to answer for your facilities standard of care”. Within fifteen minutes insurance approved the surgery and Ryan was in pre-op.
That, my friends, is sloppy staff work.
The Colangelis says
Good job Ken. Way to stay on top of things. People will learn they better have their facts in order when dealing with you.
We have to be in charge of our own healthcare, and when necessary, the healthcare of our children. You and Sue are doing a great job with this and also as advocates for Ryan. We are here to help in any way we can, even if it’s just to attempt (however feeble) to lift your spirits, just know we do it all for you.
Keeping faith and hope alive. Love and prayers always.
Gail Doyle says
Ken, All I can say is .What a disgrace for Baclofen reduction and for the day pump was inserted .. Why is everything made so much harder by someone’s stupidity ,especially for you and Sue and what you were going through???Ryan has the best advocates,that’s for sure. Hoping and praying there are no more screwups with any more dealings you have with anything or anyone. A peaceful day to all love Gail
Ryan and Kari are so blessed to have 2 smart, strong parents advocating for them whenever necessary. Keep fighting, Divineys!
Ken Diviney via Facebook says
Please disregard this comment. Testing FB and website comment integration.
Evelyn Boxley via Facebook says
Don’t mess with those Diviney’s they are well versed at this stage of the game! What wonderful advocates
Wow. I’ve always had a tremendous amount of respect for you and Sue. But after reading this, the respect meter just went through the roof. When the chips were down, you and Sue took control and made things happen. And you’re still doing it today. Persistence, perseverence, tenacity, fortitude…devotion…commitment and Love – this is why Ryan looks so phenomenal and by the grace of God continues to make progress. Wishing you a smooth day filled with fresh hope and peace. Praying for you and your family and still believing. Sending love & hugs, caring & admiration.
John Maletta says
Nice work, Ken. Remind me to never get on your bad side (wink wink). Ryan is so fortunate to have you for a Dad.