Rough Night.
Ryan had one of his roughest nights in some time. He was uncomfortable and, again, I’m not sure why. His pulse was about twenty beats per minute higher than normal. He was squirming. He was coughing and raspy. His temperature went down — albeit not nearly as low as the previous night — to 96.2℉. I am quite worried he is trying to fight off a respiratory infection. I really don’t want him spending another holiday season in the ICU.
In a direct way, I blame the blisters on his toes for all this (including the urinary tract infection). It has prevented him from receiving his full spectrum of therapy. Most notably, it stopped him from getting in the standing frame. Being upright does wonders for the respiratory, circulatory, urinary, and bowel systems. For the body, everything just seems to work better when one’s upright. At the risk of reopening a blister, I decided to reintroduce this therapy today.
Busy Day
Our current makeshift kitchenette.
The first thing going down today, beginning early this morning, is the kitchenette project begins with electrical and plumbing rough-in.
If you look at the photo (right), the granite counter top will be exactly where the table is now, except it will include a full kitchen sink. Below the counter top will be a dishwasher and cabinetry. I asked for a garbage disposer to be included, but I’m not sure it will happen. If not, I’ll install one immediately. I’m also hoping they might replace the over-the-counter cabinets to match the base cabinets.
As for the concrete project (patio, ramp, walkway), I’m in a bit of limbo here. Last week we left it that the contractor would contact me today and, perhaps, outline the layout on the lawn. I completely understand if this doesn’t happen according to plan since the owner is dealing with a family members illness that takes him away from his job. My only hope is this is done before the first significant snowfall.
Finally, Ryan’s baclofen will be reduced this afternoon. It’s a huge gamble, given his recent discomfort. Anyhow, this will be a 12.4% incremental decrease to 175mcg per day. Amazingly, since the beginning of the year, he will be roughly 59% lower than when he started (425mcg). If Ryan copes with this reduction then he’ll get another at the end of December, taking him somewhere around 150 – 155mcg. So far, at least, this aggressive approach has worked.
I don’t want to get my hopes up, but I must begin planning for the possibility of weaning him off baclofen completely. This could conceivably happen as early as next year. The target dosage to do this is around 40 -50mcg. My plan — if we get to this point — is to keep the pump implanted and run a “maintenance level” of saline through it for six months. If all goes well then we’ll have the pump removed. Granted, we are probably a year or more away from this, but I never expected him this low at this time last year.
Once again I am amazed at your knowledge Ken, things I’m sure you wish you never had to know. I hope you and Ryan have a peaceful night. Ryan’s toleration of the baclofen reduction is encouraging. I’m sure Kari will be home soon, a ray of sunshine. Take care.
Praying that Ryan’s health improves allowing him stay with the family at Christmas. Ken, take care of yourself and get some rest too. Sounds like you were up most of the night. Praying for you too.
My prayers continue. He can beat this. Get him up on the stand
Ryan: we’re pulling for you, buddy!!!!
No doubt the standing frame (and gravity) will do wonders for normalizing Ryan’s respiratory function and relieving his congestion. I’ll look forward to you posting about his improvement in the coming days as a result… and to Ryan having a healthy and happy Christmas at home with his family.
Ken, where exactly is the problem blister? Any chance something like this would help? If so, let me know and I will order today:
http://compare.ebay.com/like/160503023180?var=lv<yp=AllFixedPriceItemTypes&var=sbar
I use something like this, and it helps keep it from getting worse.
Ken, I felt like I was on a treadmill just reading your schedule for today. It’s still incredible to me the way you make all these decisions for Ryan — I know you don’t have any choice, but still, I have to say you are a very courageous person.
The kitchenette is going to look wonderful, and what a tremendous help it will be for you and Sue. I’m sure the patio will come to fruition very soon, and it, too, will be such a good thing.
Thanks for taking the “before” picture of the kitchenette — it will be great to compare the “after” picture to it. You should do the same with your backyard.
Praying for you and Ryan today, Ken — none of us want to see Ryan in the ICU again at Christmas. Does his temp usually drop when he has a respiratory infection?
Love, hugs, faith, hope
Paula
Yes 🙁
Most notably, last year at this time when he went into distress… spending 3 weeks in the ICU.
I pray that Ryan stays healthy and out of the ICU for this holdiday season. I bet he is looking forward to having Kari at home and the closeness of your family will heal him. May God continue to guide you through this all and know that you have many strangers that pray for you guys and wish you the very best. Have a blessed Holiday Season with your family and with Kari at home.
<3 Love from a Mountaineer Family in Manassas Park <3
Ken ,Hoping and praying Ryan’s cough and congestion clear quickly…Like you say, getting him up in standing frame should help..Thinking of you all and wishing a little peace and calmness for the day and for all things to clear up for Ryan. Always here. Love Gail