My ouch

 For quite a while now I've had pain in my arms.  Makes sense since I am one of the main caregivers for Casey.  He requires lots of attention :)  A lot of the attention he needs is physically moving him.  We have a Hoyer type sling and lift to get him into his chair, but even that requires a lot of physically moving him to get the sling under him, etc.  When he is not in his chair, he is on a high/low table.  He needs to be 'flipped' from side to side about every two hours.  Casey isn't huge, but he is pretty solid and cannot move himself at all to help us.  So my arms get a lot of use.  I used to have pain and weakness in my forearms/wrists and although it is still there, it's not as bad as it once was (or am I just getting used to the pain?).  

Since at least December of 2022 I've had pain and swelling in my left arm.  Actually, for quite a long time it wasn't painful, but the swelling is pretty obvious, especially in my wrist area.  My chiropractor would do some work on my arm and it would feel better for awhile.  In January, he put in a request for me to get an xray to see if there was anything in there that needed attention.  But I never got it done.  I would occasionally take Naproxen but I didn't like to take it too much because I worry what that would do to my blood pressure.  But lately my arm has been really hurting/aching/throbbing so I finally decided to do something about it and called the doctor.  Believe it or not, they had an appointment for this morning!  

Went to appointment.  It was with a young resident.  She was very nice and attentive and took all the time she needed to hear me out and had me do all sorts of physical movement.  She narrowed it down to my upper shoulder.  Something about there's a compartment there and when it's inflamed it get smaller and is painful.  She called it Rotator Cuff impingement or degeneration.  Ugh.  I'm to take prescription strength Naproxen for 2 weeks around the clock, I can use the diclofenac gel as needed, ice on and off, and they will have me go to PT for a couple of sessions to get some exercises.  If it doesn't get better I can see their sports doc and see about injections.  

So there.  That's a lot about me!

We also had someone from UVM Home Health or whatever its called (our VNA nursing merged with our hospital) come for a bit.  She was from Human Resources.  She has to do with business and recruiting.  She wants to get to know the high tech nurses and what their jobs are really like.  She wasn't here very long before she had an emergency call and had to leave.  Oh well.  Maybe she'll schedule another time to come back.  It's good to know that someone is interested in what the high tech home care nurses do.  They seem to be forgotten a lot of the times.  

Also, Casey's trach stoma looked pretty red when we changed out his trach today.  Not sure if it's yeasty or a bacterial thing.  So, we are going to use Nystatin at night and Mupirocin during the morning care.  And see what happens.  

Updates:

 

 Two big updates:

We adopted a female black lab!  She's about 15 months old.  We got her off Craigslist.  I know, I know.  But it worked out.  She's a good girl, for the most part.  Biggest issue is that she's a runner. Twice within the first couple of days we had her she got loose and took off.  Poor Gene almost had a heart attack.  But he got her back.  The best thing about her is that she is not timid with Casey, his medical equipment, nor his chair!  That's always a worry.  She just took it all in stride.  She's also very, very sweet and pretty.  She's much smaller than Jaxon was.  We weighed her here and she was about 53 1/2 pounds.  

The second thing is that our renovation has begun!  The crew came on Tuesday, the 13th with the contractors and they made a plan (for what it's worth).  They started actual demo on Wednesday, the 14th.  So far they haven't touched the upstairs bathroom so we can use that, thankfully.  The kitchen is GONE!  The living room is gone!  Right this minute the entryway floor is still there and they haven't touched the laundry area.  Tonight we have to get the rest of the things out of the entryway as the floor will be worked on tomorrow.  

Oh, the the electrician is here.  I'm not sure what they are doing but I hope progress is being made.  Plumbing and electric are going to be HUGE.  Hopefully they built enough into the contract to cover what needs to be done.  We are already adding to the cost as there some sill rot and some other things that need to be fixed that I don't even understand.

What else.

Casey had a pulmonary and an ENT appointments yesterday.  Pulmonary was fine.  Pretty much a check in and a catch up.  Dr. Cowan will talk to Janet about trying the Astral vent and also maybe the Shiley trach that they just re-designed.  ENT sucked out his ears.  She thought they were a little damp.  MAY eventually try some powder to get the flora to be more normal.  We talked about the supragranuloma (not sure if this is the proper name) that Dr. Lahiri found when he did Casey's bronch a month or so ago.  She thought it would be a good idea to remove it.  It's above his trach so it's not affecting his breathing or trach right now.  But who knows if it will grow more.  And, if for some reason we couldn't get his trach in, the granuloma would block an intubation tube.  So we probably will do it but not not super soon.  It entails the whole nine yards: fasting, IV, sedation, surgery, and recovery.  Ugh. She thought his trach site looked good.  Casey was pretty cooperative overall.  

Some funnies about the trip to UVM.  We had to bring Molly with us as she's still too new and nervous to leave here alone.  So Gene dropped Nurse Staci, Casey and I off and they went on adventures.  Molly got to pee all over Burlington!  She loves riding and was mostly cooperative.  

Dr. Cowan had a resident with her.  First thing he says to the resident. "Korean".  The resident said, "You got me"  :)  He was a good sport and put up with Casey's questionings.  Of course Casey wanted to know his wife's name (not married), children (none), address (Burlington).  Etc.  

Cancelled bronch :(

 Long story but I cancelled the bronch for Casey.  When the pre-op people called they told us to be there at 6:30AM!  I thought something had changed.  No one could tell me what the actual time of his procedure was.  Come to find out, there really isn't a time set.  Its first case, second case, etc.  But, when the pulmonary nurse called on Monday morning to check what was up, she said to just ignore what the pre-op people said, sigh.  I wish I had known.  When I tried to find out what was up, on Saturday morning-because no one called me back from pulmonary on Friday, I was sent all over the hospital but no one knew anything.  I don't know why I never thought to ask to have the on call pedi pulmonary doc paged.  We're pretty self sufficient and haven't needed things after hours very often so it didn't even cross my mind.  

Anyway, he is scheduled for Monday the 24th and we're to be there at 7:30 AM.  That's early enough for me!  We're way out of practice in getting ready early.  So crazy to remember that we used to have Casey ready by 7:00 AM certain days of the week his last few years of school.  (some days were later).  

Casey has to get another Covid test done.  The same service will come here.  The nurse I spoke with at pulmonary said they had no problems getting into the van to test him but when they called to set him up, they said NO WAY so they have the service coming again Friday at 10 AM.  

SMA Awareness Day #6

I didn't think too much about which shirt to wear today because I just grabbed the top of my pile because I was rushing to get ready as Casey had an appointment at the hospital this morning. But, it is one of my favorites.  I have this orange #CureSMA shirt and a blue one.  I had a purple one but I trashed it with bleach so I just ordered another.  I hope it comes before the end of the month!   Orange and purple are the colors of Cure SMA so I like wearing them, especially during SMA awareness month.  

****OH and this Saturday is the annual candle lighting!****

August is SMA Awareness Month and we choose the second Saturday in August to remember those who have lost their battle with Spinal Muscular Atrophy (SMA) and to honor those living with SMA. We hope to spread awareness and unity to all families, especially during this most difficult time. Join us to light a candle and spread the light around the world on Facebook. Light a candle from anywhere at sunset on Saturday, August 8, 2020

Here we are at the hospital. Casey had an infusion today to help increase his bone density and treat his osteopenia.  Years ago he and Colin had an infusion of a medication that took hours to deliver and had to be given over two days.  This medication was given over a half an hour and didn't require any blood test before hand,either.  The nurses were very nice and efficient.  The worst part was waiting for the IV nurse to arrive.  She got him on the second try.  

Gene dropped Nurse Staci, Casey and I off and he drove somewhere and found some wifi and did some work.  He also picked up a pizza from Marcos :) We arrived at 9:45 and hit the van by 12:15 so that's not too bad.  

Casey had a shower to get off any hospital germs.  I took a quick nap. I am always so drained after being in that place.  OH, we saw our old nurse, Karen, so that was cool. 

Casey started feeling yucky.  We were warned that after the infusion you could feel symptoms similar to having the flu; achy, tired, etc.  I hope that since he has had a similar med before that it wouldn't affect him but it did.  Each time he gets it he should have less affects. 

Reading group was fun today.  We have a new participant and it was great to have her.  I think she'll be a good fit in our little group. 

5 prescriptions later...

Took Colin in to see Dr. Queyquep this morning.  We came out with drops for his eyes, drops for one ear, antibiotics for the slight crackles in his lower lobes (trying to ward off a true bronchitis), possibly two nebs for his lungs (wanted Xopenex but it requires a prior auth so we may have to do one or two nebs of Albuterol before we get the Xopenex).  And, we're to give him probiotics twice a day.  Hmm, I guess that's it.

Funny thing is, I thought he was much better today.  I thought we'd just get something for his eyes, which are red, watery and producing a goopy green discharge.  But one ear was full of debris, very wet and retracting.  I asked her what retracting meant in this case and she said that it was kind of pulsating due to the pressure.  Ugh.  And, since he was starting to have some crackles, we want to ward off any secondary infection.  Oh, and his temp was 99.9 at the office and he was still under the influence of ibuprofen, so I guess we'll keep up with the rotating schedule of Tylenol and Ibuprofen. 

As promised, I got him a chocolate munchkin from Dunkin Donuts so it made him happy. 

Long story, but he was supposed to make salsa today during his Unified Arts class with Mel.  But Mel had to cover for a para that was out, so we decided to let Colin sleep in a bit and have Priscilla come at her normal 8:50 time.  He'll get to do his 'cooking' tomorrow.

Casey is off to his outing to the UVM campus to visit the Francis Colburn Gallery (William Science Hall) and the staff art exhibit currently showing at the Davis Center.  I hope he has fun.  It could go either way--you never know with him!!

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Casey was nervous when he first got to the gallery but then he settled in.  Julie sent me these pictures. 

He said he was confused about the art.  The picture of the brain interested him but 'confused' him he said.  At least he was commenting on the art, which is what we want :)