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Laying low this week, because the next two weeks will be a doozy!



After the storm calms down today, we will go for Ray's bloodwork for his PCP appt next week, then while we're out catch up on errands and shopping. Tomorrow therapy, otherwise just hanging out for once. Couldn't believe my eyes when I looked at the calender and there was nothing there!


Poor Ray, last Friday he woke up with a noticable shortness of breath, and I almost took him to the hospital to get it checked out. The only reason I hestitated was the last time, when we (he!) called EMT at 2 AM, the diagnosis after eight hours of tests was anxiety attack so I was afraid it would be the same deal. As I was pondering what to do, the head of the in-home nurses called to come over for the weekly visit, so I left it to her. His vitals were all OK, so she just called the doctor's office and alerted them to what she found. Love how she gets right through to him! The problem lasted maybe 15 minutes and unless it happens again, guess we can wait til Tuesday and our regularly scheduled PCP visit to see what he thinks.


Then twice in the last few days, Ray woke up with his bad foot bleeding. It probably looks worse than it is, from the aspirin, but I am terrible with any type of blood. My guess? He has stopped letting me put lotion on his feet after his shower, and they look really dry. Wish someone would offer to massage lotion on my feet once in awhile, I sure wouldn't say no! Again, my immediate thought was ER, and again as I hesitated, his regular nurse called for a visit, then came and redid my amatuer dressing and bandaging and found cracks between his toes, which she agreed was probably just dried skin. I couldn't bear to look that carefully myself, I am no good at that kind of stuff. Just covered up the blood with cotton and Bandaids, and waited to see if it soaked through, my usual MO. So another note for doc Tuesday morning. Right after his visit, we will immediately embark on a whirlwind of medical activity.


So about the overnight tests. I was tempted by the tests being done at home, so we went to see the neurologist's cohort to set it up. He took all of one minute, and said yes he thinks Ray has apnea (don't think he even glanced at the 20 pages of questions I had to fill out). Said he would have their place call for us to schedule the apnea test (which I think WOULD be overnight) and the three day EEG, which Ray could go home. That would be quite the sight for the neighbors, arriving with all the wires attached and grease all over his head! But then he told me the place was in a warehouse in a run down neighborhood (my words, not his, of course) and I started having my doubts. Plus that I would have to stay with him the whole time, because there are only techicians there, no nurses to help him to the bathroom or watch his meds. Doc said they would call me to set it up, but luckily I never heard from them (an omen for sure) so after a week, I called the hospital where the other doctor wanted Ray to go, and they were much more professional and reassuring. Ray doesn't seem to be upset about staying overnight, although I hope he understands...I told him I'd be with him most of the time but that I'd have to go home to feed the cats and sleep. And have a little time to myself of course! Ray seems to LIKE being in the hospital, it's like he feels safe there or something.


So next week, after our Tuesday AM PCP visit, we will get a call what time to show up at the hospital and Ray will be there until Friday, or maybe Thursday if we're lucky. BUT we have the big meeting with the SNF day care Friday afternoon, so I have to tell the person in charge that Ray has to leave by noon latest, regardless whether they are done, so that we can run all the way out east, with hopefully time to stop home and wash the *beep* out of his hair. Then the Tuesday following is a consultation at the same hospital, to set up the apnea stuff. Thank goodness only one night for that. And the next day is the psychiatrist again, at least I will be able to say I stopped stalling and am getting the tests done finally. Plus setting up daycare, which they were adamant about. Only thing I'm still not doing that he ordered is a dentist visit. Ray hasn't been in years, ever since he had tons of work done and got dentures made, and then threw them away and let most of his teeth fall out. So upset when I was paying the bills for a year after! But I'm hoping we can work something out at the day care once he gets settled there, they do dental work so that would be convenient.


I can't believe how we've just been floating along and all of a sudden, this new doctor causes such a flurry of activity. I figured it was all over as far as anything new. Also can't believe my good luck, that twice Ray had some issues and then the nurse calls to come by coincidenally that very day. They seem to think they are going to keep coming, despite the fact that they probably won't ever provide us with another aide; not sure how that would work out in the event we get day care, but right now I am so happy for those last two visits. They actually had something to do besides blood pressure and going over meds!


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I'm guessing that even after the test and the confirmation that he has sleep apnea, he will refuse to wear the obnoxious mask to sleep in, making it all futile.

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Lauren had a mask at first and didn't do well with that. Then he switched to a nasal cannula that goes into both nostrils and he is tolerating it better. He still doesn't like it and occasionally pulls it off but mostly he leaves it alone. This is not negotiable with me because his sleep apnea is severe and life-threatening so it is as important as any other thing we do.


I'm glad it's working out to do these tests in the hospital. I think you will find it much easier to do and I would guess that the technicians are a bit better trained for more complex medical situations like stroke.


Good to hear the update! ~~Donna

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I'm so glad to hear there is a better way to wear these things now. I hope it makes a difference for him. It does seem that things happen all at once, and with our stroke guys, it's so hard on us to get thru it. I hope all this new activity will have good results for you both.

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Colleen: regardless of the outcome, you go with the test. Knowledge is power. And in stroke recovery, getting some control over our lives is critical! There will be options as to the outcome of the tests. You try and you see what works, what is tolerable. And know that anything can overcome the majority - Look at our survivors!


Don't worry about the "beep" in his hair. If anyone calls from Adult Protective Services, you list me as a reference - LOL.


You know about Ray's feet. Bruce never liked any kind of lotion on his body. And still post-stroke, I have to fight with him. Bruce is incontinent. There will be times he needs lotion and as to his feet - that AFO sucks all the moisture out of that affected foot, even with 100% cotton sox. We were given the Ikea foot lotion as a gift. Since I have to put on Bruce's shoes and sox, I do a skin check every morning. When he seems dry, I just do it. And guess what? All of a sudden, Mister likes his pedi! LOL. It is very light, no scent and I think that, plus the massage made the difference. My sister was amazed when she saw this. Plus Bruce's nails on that affected foot grow strangely now, so they have to be monitored closely.


You are doing great. And so many of us are following your thread and learning. Thank you. Debbie

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Hope everything goes well with the test. Ray's feet sound like my problem, dry, and toe nails, that are long and hard to cut. Now I use a cream called Econazole Nitrate, from my doctor. I have to put it on twice a day, but my feet is coming along.


Both in my prayers.



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Thanks for the advice, Yvonne, we have a doctor visit Tuesday and I am gathering notes to bombard him with. Your Econazole Nitrate will be on the list, along with the Silva something that Nancy recommended too.

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