dirtycopper's Blog - page 27

All the testing is starting to pay off. My wife, prior to her sleep study last night, had to take a cardiopulmonary test, and today, the doctor from the Sleep Clinic said that it showed she had reduced inhalation and exhalation.

Last night however, during the sleep study, she showed no signs of any problems breathing, and according to the doctor, slept better than any adult he's ever tested. He said the only patients he's ever had that slept as well as she did were infants.

So, long story short, no sleep apnea. But, since she had trouble with the cardiopulmonary screening for the sleep study, he is now wondering if she has reduced lung/breathing function due to weakness in her diaphragm caused by her SMA. So, he's referred her to see a cardiopulmonary specialist next week.

She also has to see a couple of other specialist now, and the level of care and cooperation between the docs while they try to figure out what is going on is astounding. I wish all hospitals and docs worked together to find a solution as the docs here do.

Thanks again to all of you for your support, kind words, and prayers.

DC

Well, today was another day of testing, and waiting. We met with a doc in the sleep lab today, had more blood drawn, and met with a psychologist who told her she wasn't crazy, (WHAT??? LOL) and did two cardiopulmonary test. She said they were hard to do.

I've been worried about her oxygen level for a while, and purchased a pulse oxymeter, to try and keep and eye on her oxygen level. I kept telling her docs back home that when she seemed the most out of it, the most tired, her oxygen level was low, but they would check it and it was always fine in the docs office, so they blew it off.

I've started logging the times and such, and showed it to the docs up here. All seem concerned by the fact her O2 level drops to as low as 83% at times. Her lips and fingernails turn blue, but in just a few minutes it comes right back up to normal.

So, tonight we're spending the night in the Mayo Clinic Sleep Lab, and she's having a sleep study done. They wonder if she has sleep apnea, but since it's happening during the daytime too, I don't think that is what is going on.

We met with a specialist in SMA type 3, the genetic disorder she has, and he said that although in 99% of people with SMA3 there are no respiratory problems, it can and does happen.

So, now we're wondering if that is what is going on. Maybe she's not breathing deep enough due to a weakened diaphragm. If that is the problem, I'm not sure what they will recommend to fix it. I'm hoping she doesn't have to go on O2 for the rest of her life.

Tomorrow morning we have a meeting with a urological/gynecological specialist to see why she's having so much pain in her pelvis, etc. Hopefully we can get this all fixed soon.

Thanks again to all of you for your words of encouragement and support.

Well, she had blood and urine testing today, and then we sat the rest of the day trying to get in to see one of the docs she's schedule to see in Dec. Hopefully we can get her in this week, if someone cancels.

Some good news, two of the other appts she had with specialist, one for two weeks away, and one for the first of Dec, we got moved to tomorrow and Friday, so that's good news.

We'll just keep plugging away.

Thanks to all of you for your words of support and prayers and positive thoughts. Science has proven it works, although they don't know how.

So thanks all.

My wife had an EMG test today to check her nerve response and muscle response to stimuli. It's a standard test for patients with SMA, although an unpleasant one. They send electrical pulses along the nerves and check the speed the impulse travels through the nerve.

The second part of the test involved sticking needles in at various points on her body. The needles have a microphone in them and they had her flex her muscle and they listen to the nerve (electrical) impulse the body generates when you move a muscle.

The doctor said her preliminary findings were consistent with a person with SMA type 3, but she would have to review the info and give us a full report later.

Tomorrow she has more testing, blood and urine testing, and then begins the waiting game. They have given her a schedule of appts. that spans the next month and a half. We told them we couldn't stay up here that long and they said that we would have to report to each individual department daily and get on the waiting list for someone to cancel. Then, we could get their spot.

We talked to several people and they said we wouldn't have any problem getting in, as they have a lot of cancellations. So, hopefully, we'll only have to stay here for the one week, but if not, we'll probably stay over the weekend and try to get the few we don't get done finished early next week.

Keep us and her in your thoughts and prayers. Hopefully, we can get this all done now, and not have to come back.

Well, we're here. My wife got registered this afternoon and has her first appt. at 10 for her initial evaluation. After that, who knows, we could be here for a day or two, or a week or two, depending on what they find.

Thanks for all good wishes.

Will try to keep you posted.

We're heading out this morning for Rochester MN to the Mayo Clinic there. We're staying at a place similar to the Ronald McDonald house and I'm not too sure on the availability of internet access, so I may not be on for a few days.

But it's cheap, $25 a night, so we'll make do.

I'll try to update this as I can.

CYA

It's been over a month since I updated my blog...and what a month. My wife's health is slowly deteriorating and we aren't sure why. She's had several severe infections, and is still having pain in her abdomen and lower back.

She's gotten weaker, and has fallen several times while trying to transfer from the bed to her wheelchair, etc. We've been to the ER 8 or 9 times this month, to the doctor at least once a week, she spent three days in the hospital while they ran test....

and they still can't tell us shit. *Sighs*

She'll be better for a few days, maybe a week, and then the symptoms come back, dizziness, lack of appetite, fatigue, short term memory loss, and then it gets worse.

She talks out of her head, remembers stuff that didn't happen and forgets things that did, has trouble remembering what happened five minutes before....and just wants to sleep constantly.

So, I asked her family doc about the Mayo Clinic, and he said he would give her a referral. His nurse called and we have to be there Monday, or wait until January. Since her insurance deductible has been met, and they cover %100 right now, we're going now.

Plus, I don't know how bad she'd get if we waited that long.

So, wish us luck and keep her in your prayers.

Thanks.

Sitting in a ER room waiting on the Doc. My wife is having severe abdominal pain low on her right side. I was worried about her appendix until she told me she hasn't had a bowel movement since Saturday.

Now I know why shes hurting. Yikes!!!

Sitting in a ER room waiting on the Doc. My wife is having severe abdominal pain low on her right side. I was worried about her appendix until she told me she hasn't had a bowel movement since Saturday.

Now I know why shes hurting. Yikes!!!

Well, it was a rough day at work. The company I work for had three employees die in the last 24 hours.

One was a young man who had an accident at work, and was crushed by his forklift when it overturned, killing him.

Another was an employee of the same distribution center, who passed away after a long illness.

The third was a truck driver for another distribution center who had a heart attack while unloading at a costumers facility.

My thoughts and prayers are with the families of these three men tonight.