Normally, when I feel the need to put everything going on into a list it spans what’s coming in several days to a week. Not today, though. Today’s list is just that… a list for today.
- Baclofen Reduction. I made the decision to continue with today’s baclofen reduction, despite Ryan continuing being occasionally uncomfortable (hypersensitive might better describe him). He did well with his last reduction (two weeks ago). His discomfort, in my opinion, is tied directly to the urinary tract infection (or the exceptionally strong antibiotic to treat it). So, this morning he will be knocked down from 135 mcg to 110 mcg.
- UTI. Sue and I spent all day yesterday trying to figure out what to do next. We are concerned that the infection, although not likely, might have ascended to the kidneys. We came within a hair of admitting Ryan to the hospital (even decided where to take him, Reston Hospital), but decided to take another approach. Namely, continuing the antibiotic (Cipro) another seven days. This will buy time to get more blood work and urine cultures grown out. Meanwhile, we are bringing a urologist and infectious disease doctor into the fray.
- Dr. Hinkle. Just like almost every week, Dr. Hinkle is coming this morning to check on Ryan’s eye health. For the first time in months Ryan’s eyes look fairly good. For a while there his eyes looked like tomatoes. Thank goodness Dr. Hinkle was kind enough to stay on top of this and, despite the redness, no damage seemed to occur.
- Blood Draw and Urine. Dr. Rodriguez is sending over a nurse to draw blood and pick-up another urine sample to culture. We are running every test I can think of doing, provided Ryan’s vain stays open long enough to fill several vials. The earlier blood work was suspicious (and incomplete), so I threw it out (or discounted) the results.
- Fluid Retention. While everything above is going on, Ryan also is retaining fluid. His weight went up six pounds in just three days, recovered, and went back up again. The retention is most notable in his feet (swollen) and stomach (bloated). Dr. Rodriguez directed us to give him two doses of Furosemide, commonly called Lasix. This is used to dump unneeded fluids and salt from the kidneys into the urine. Ryan had the first dose last night and will get another before I get him up in about an hour.
- Patio. I was told last week that the crew would be back this week to put on the finishing touches. The jacuzzi will be brought back up and I think some more fill dirt to reduce the grade from the patio. My guess is this will be today.
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As for me, I’m mentally and physically exhausted. If I were a celebrity, it would be cause to admit myself to the hospital (that’s a joke… sort of). Yesterday was nothing short of a mental marathon in doing research, talking to doctors, and weighing decisions.
By eleven o’clock last night my mind was fried, or so I thought. My brief periods of dozing off (yes, I still don’t sleep well) were filled with dreams replaying the previous day’s research and decisions. It was one of the rare nights I didn’t dream of Ryan being whole again.
I dreamed reality.
Hang in there Ken. I hope the weekend provides you “some” opportunity for rest. You’ve been on top of things.
Just want to tell you I still check on you daily…you are and will be in my prayers…
Hey, Still here and thinking of all of you often. I hope Ryan’s discomfort lessens. I hope Ryan’s infection disappears. I hope, I hope, I hope……
I wish we could do more to help or provide all the answers you need. We know how hard you and Sue are working to keep Ryan as healthy as possible and optimize his recovery. I’m sorry it’s such a frustrating, exhausting and slow process. I hope the Lasix is helpful, and I’m glad you and Sue are getting some help to focus on bladder/kidney issues. We are here for you all, whatever we can do to support you. Know that the prayers for Ryan never cease. Praying that you and Sue will get some sleep and maybe even a sweet dream or two tonight <3
Somewhere along the way we need to get a University to award you with a Ph.D.
^ Since I cannot give the above comment a thumbs up, I will say: “LIKE”!!!!!!!!!!!!!!!!!!!!!!!!!
That would be nice (and in all humility, deserved).
Praying.
Bless your heart. I swear I wish I had a magic wand that I could wave and make everything all better. But I don’t. So I will do what I can do — and that’s to continue to pray every day for you and your family and send you another Hug!
You got my email from Joanie, right?
Yes. Thank you. Still haven’t come up for air. Next steps: CT scan of the kidneys, bladder scope, and a special test called urodynamics (where the bladder capacity and function is measured). Also looking for a stone in the bladder or bladder overflow with a lot of residual urine.
You may be on the right track about the UTI moving up to the kidneys. I had that happen to me, I let the UTI go too long and ended up in the hospital for 10 days with a bad kidney infection. My symptoms included a fever and lower back pain. The problem with the UTI progressing to the kidneys, it becomes so much more difficult and longer to clear up. The infection was detected in the doctors office after a urine test detected blood in the urine. Hope this info hopes you.
Hi Ken, oh how I wish we could have a team of medical people to watch over Ryan so you could relax and rest — but I know you still wouldn’t be able to relax. Your mind would still be running through all the possibilities, trying to figure out the best approach to a problem and what the next steps should be.
I hope you can watch Swamp People or one of those brain candy shows so you can give your mind a little rest. (The “Swampsgiving” episode was one of my favorites — disturbingly hilarious : )
Of course thoughts of you and Sue are heavy on my soul, and I can only hope you will continue to reach out to us when you need help with something. I know you don’t like doing that, but we are depending on you to tell us.
Please keep us updated as you are able. I know that’s asking a lot, but we all want to know how Ryan is doing and how you and your family are doing.
Sending love as always, and of course my prayers.
Paula
Your 900,000 views post has me motivated to comment more often. Thinking of you as you work through your busy day. Was really surprised to read that you didn’t dream about Ryan last night since, for the first time EVER, I did. He was most definitely whole, and so were you :).
Ken, A busy day for sure. Hoping new Drs and you come up with some cause for UTI and treatment..Sorry Ryan is uncomfortable. Glad for baclofen reduction ,as it hasn’t caused any negative reactions so far and in time ,can only help Ryan…praying for you to have the strength you need and that you’ll be able to sleep a little. Give Ryan a big hug from me
Love Gail