Next Wednesday, October 3rd, is blocked-out for Ryan’s next operation. He is having his internal baclofen pump removed from his abdomen. This surgery will be performed at Children’s Hospital (Washington, D.C.) and he will need at least one, and possibly two or more, days in the hospital. The extended-stay is strictly for observation and recovery, unless something goes wrong. We’re not expecting anything.
Keeping Ryan healthy is paramount now. For this reason, I am declaring our home on lockdown. Think of it as self-imposed isolation, in reverse. Instead of safeguarding people from Ryan, I’m doing the opposite. Isolating him from the world. Nothing comes into this house (to include mail and deliveries) without being disinfected or sterilized. Nothing. Our poor dogs will be so clean they’ll squeak.
The same caution also will occur after the surgery for at least one week. Our home again will be nothing short of quarantine… again, in reverse.
I simply can’t tell you how important it is to Sue and myself to get this out of him. For thirty-four months we looked at our son and couldn’t help but see the huge bulge in his stomach. The constant reminder of the agony our son endured without even a second of peace. Good riddance, I say!
In this photo Ryan is having his pump refilled. The left side of his abdomen bulges from the internal baclofen pump.
Still, in the end, we had to make sure it was in Ryan’s best interest. No matter our grief. So, we decided to hang in there for three to six months and see how Ryan did baclofen-free. After five months we are sure this is no longer needed and it will be one less thing to make Ryan uncomfortable or in outright pain.
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Reminder: This Saturday is the long-awaited De-Clutter for the Divineys II Mega Yard Sale. You can read about and see some (but not anywhere close to all) pictures of the contributions here.
In Case You Missed It: In what became the all-time most read post on this website, Violent Felon, Austin Vantrease Wants Donor Information (eclipsing the previous in less than six-hours), I alerted the public to a news story that broke on the front page in West Virginia. It’s not only a must-read, but it something that should be shared freely through social media.
Hi Ken, I know it will be a happy day when this large device is finally removed from Ryan’s stomach. And to think it could have remained there and Ryan could have been on baclofen for who knows how long, if you hadn’t had the initiative and courage to get him weaned off the baclofen. What a responsibility you must carry in having to make so many major decisions on behalf of you son. It seems to me you should have so much more in the way of medical support. Still, you manage to provide Ryan with superior care. I will be praying that Ryan stays healthy for his surgery and that everything goes smoothly.
Meantime, I saw the pictures of the Declutter Yard Sale — WOW!!!
Team Diviney, be sure to get the word out about this phemonemal event. Lots of cool stuff at fantastic prices!! This is a not to be missed sale!! And it’s for a wonderful cause. Let’s do all that we can to help this beautiful family as they continue to give all that they have to help their son get better.
Lots of love to you and your family, Ken, and I am still here, still praying
Paula
Ken ,So glad Ryan is getting pump out. I’m sure he’ll feel more comfortable. Hope he doesn’t have to stay too long in hospital and NO infections.Will be thinking and praying for all.
Know Sat will be a HUGE success!
Love Gail
This is a big milestone in Ryan’s road to recovery. It’s been a long time since reading how you weaned Ryan off the baclofen. Great to get rid of that pump once and for all. This is one thing Ryan will be free of and I believe he will have more positove milestones to celebrate in the future. We continue our prayers and ask God to protect Ryan through the surgery. Good luck as you prepare for next Wednesday.
Ken, I think this a great idea, and one that most people don’t think about before or after a surgical procedure. One never knows what germs and bacteria are floating around these days. I know you will keep us updated as you usually do — sometimes hour-to-hour. 🙂
Please take measures to take good care of yourself and your family, too. We don’t want anyone getting ill when Ryan just needs to get that bulging pump out, although it likely saved him from many a seizure. I am thankful that a device such as the Baclofen Pump exists, knowing the risk of bodily injury these dangerous seisures may have as they assault the body.
Sending love and praying for Ryan to sail through this procedure and have no ill effects.
So I had to take one of my sons to a dental appt, and decided to stop by the Declutter for Divineys yardsale — and — in the span of a couple days, the inventory in the store must have tripled!! It’s like a department store in there!!
I don’t know who all these wonderful people are who are donating these amazing items, but I just want to tell you, THANK YOU SO MUCH!!!
I also saw the dedicated volunteers there busily arranging items, hanging clothes, setting up different display areas — and I really want to thank them for their generosity and commitment to a family that now has become our family.
If you could only know how much your kindness means…..gotta go, got a lump in my throat
……..thank you so much……………..
I hope the surgery goes smoothly for Ryan and that there are no complications.
We’ll help keep an eye out over your way while you are all at Children’s.
Take care, Ken.