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Busy here at Chez Sparks


Ethyl17

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Well as most of you know from Chat last night, been an interesting five days here at Chez Sparks.

 

After the incredible week we had, preparing for Bruce's college roommate's visit, Bruce went straight down hill starting on Friday afternoon. I have decided that when he is on duty and has a list of to-do's, he just functions better. Left on his own, he tanks. We did all our usual stuff and then the extra to prepare for Steve's arrival. Friday is my long day at work and Friday evenings are always a struggle (I may have to rethink this schedule). Bruce does not nap awaiting my return home, and then it is straight uphill from then until bedtime.

 

From Friday night until Monday night when Steve left, I did 11 loads of laundry, after the man went three full days of total continence. Leo did two more Monday night.

 

So today we started with a new Physiatrist. First thing was she upped Bruce's Baclofen dosing. He was put on the minimum to determine allergies for the pump trial last fall. As you all know it took three attempts, one finally with a specialist, to complete the trial. That took all winter. We had appointment with Physiatrist, and Bruce was sick. Had to reschedule, Bruce's Physiatrist left the practice and we had to wait for our new one. She said she felt bad that he was so tight and had to wait so long.

 

Bad news: the rash on his arm, almost now fully gone after six weeks, was impetigo. When was the last time you heard of that? And yes, he got it in the pool. Bruce has an incredible immune system, so was able to recover and not have it spread without antibiotics. Doc said it was a miracle I did not get it. I explained I was a Nurse and toxic anyway-lol.

 

Bruce will be on Medicare in September and Doc will re-apply for Botox at that time. Actually that was the reason I set up this first appointment, so come September, re-apply and lets get moving.

 

Doc was concerned with the incontinence, so we are seeing a Urologist in early September. My question was is the Ditropan really helping, yes he has made some progress; but if not, get him off it.

 

Doc was also concerned about his sleep pattern. I explained that overnight, pre-stroke he only required 6 to 7 hours. Then Bruce piped up and said, but I am awake from 3am but don't get out of bed until 5. So now we do have an issue. Bruce has a sleeping pill ordered, chose to come off it 3 months ago, but I told Doc I had some if he needed. Based on the Baclofen increase, she wants me to hold off the sleeping pill for a bit, waiting to see if the Baclofen helps with the sleep. Bruce has not taken Baclofen at 10 pm and with his Zanaflex and Tramadol, this may be enough for now, until he gets used to the increase in the Baclofen. With the extra 10 mg already on board for today, he has been sound asleep since I got home-that never happens, so figure with a dose still to come, tomorrow will be a down day. If he is up to going to work, we'll go, but OK if not.

 

I managed to get some much needed paperwork and phone calls in this afternoon. I do so try to stay on top of all that stuff, but amazing what a few days off will do. Made appointment for truck-have to leave it and not 10 minutes later, party that was to take me to pick it up called and cancelled. I was too tired to deal with it. My neighbor hopefully will be able to do it, if not it can sit there until Monday and I can get it with Leo. We still have Honda to get out and about for errands. And Jen will take him to pool in her Jeep on Friday.

 

Our visit with Steve was wonderful. Bruce and I had gone to the local farm for fruits and veggies. I grilled Salmon the first night. Steve cooked Chicken the next. He took down some branches that were overgrown over the deck, but mostly just sat and talked with his buddy. Lots of deck time, weather was perfect-humidity not too bad. Steve loves humidity being from NM, but Bruce at one point said "I have to go in". Steve grew up in Rhode Island and was here also to visit his parents and sister. Hated to see him go, but so appreciative of what he does for us. Just a very special person.

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Debbie, you have your hands full with laundry, change of meds, visitor and work! It's amazing what you do. :juggle: Bruce's physiatrist seems to help with much more of Bruce's medical problems than Larrys. All she does is give the Botox and leaves the rest to his internist. I guess that is okay. but I wish she would be a little more concerned with Larry. I know she is overwhelmed as she takes care of 12 beds in the stroke unit as well.

 

Bruce is lucky to have such a nice friend. Sitting out on that deck grilling sounds great with the weather you have been having.

 

I hope all goes better for you with the new doctor and Bruce's meds.

Have a pleasant weekend. :cocktail:

 

Julie

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Wow Debbie, I read your sentence on the impetigo and thought I sure hadn't heard of that in a long time before reading you next line! Why is it that our guys seem to find the strangest things to get?! You have a treasure in a friend who will spend time with your husband. The few male friends that Dick have left never visit. I'm feeling for you with all that laundry.

Ruth

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Debbie, the sleep issue worries me as Ray has had 14 hours of sleep a day here but in hospital they do not put him down for an afternoon nap. He does nod off a few times in the afternoon though. When he gets too much sleep he is not as alert as when he has less.

 

I wonder if Bruce feels more depressed when his special visitor goes home and so out of boredom he sleeps and sulks and will not co-operate because he feels "what's the use, nothing special to do today"? I am sure that applies to Ray from time to time.

 

Sue.

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Debbie,

You do have a gem of a friend to come and spend time with Bruce. That is funny that Bruce is continent for 3 days and then...What happens?

 

Yes, I do think that a urological consult is a good idea. Too much laundry for you. Lucky for me ,,my caregivers do all of the laundry.

 

Bruce, most certainly does not sleep much. That is amazing! William sleeps so well. He does not need the sleeping pill. This is especially if I am home and keep him going.

 

I do hope that the botox helps. I haven't been having any botox recently for William. I am not sure that he needs it. He seems to be doing well without it.

 

Take care of yourself.

 

Ruth

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Debbie, That's wonderful that you had a nice visit with Bruce's friend. Just being able to sit, relax, and have a conversation that's not about stroke related issues is wonderful.

 

MJ

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