Bedtime Body Positioning with a Trach

There is so much to sift through while navigating ALS.  Jonathan has had his trach for 2.5 years now.  When we first had it placed we had a lot of questions about sleeping. (If you ever have questions, don't hesitate to ask)  We wondered if we needed to bring in the hospital bed, would he need overnight care, would he get bed sores from not turning, how would that influence transfers etc.  ALS is so different for everyone, so take this with a grain of salt.  Honestly, you really can't compare your methods with others but just glean and sift what works for you.  Jonathan has slept in our regular queen bed in the exact same position all night long for the past 2.5 years.  I have no idea how this man has been able to tolerate not moving for 8 hours at a time, but he does it.  I love and marvel at him daily.  This is absolutely not for everyone, but enabling him to stay in our bed has been therapeutic for all of us.  A wheelchair is isolating for us and him so evenings in bed are a slice of heaven.  Being able to sleep next to him and access his suction machine through the night without getting up out of bed every time has been a life saver for my sanity.  Again, this isn't going to work for everyone, but if you sift and glean anything helpful its worth it.  This is a video of how we position him at night. (Bless my sweet 9 year old for being videographer.  I do get a little dizzy watching the video... be wary all ye seasick sailors!) 

How can you not love this???  Every night before bed Anna crawls up next to Jonathan and they read a book together on a YouTube channel called "Story Time with Ms Becky".  She and her dad have spent hundreds of hours snuggled in a ball in bed.  It is all the kids' favorite place.  We read scriptures as a family every night before bed and if Jonathan is in bed it is always a fight for the Dad spot.

Condom Catheters

Single handedly the greatest addition to sanity in early ALS life was the use of condom catheters.  When Jonathan was first diagnosed (2016) he developed an urgency associated with having to use the bathroom.  He was still walking but when he had to go to the bathroom he easily lost his balance.  The minute he had to urinate he had to go to the bathroom NOW and walking to the toilet was like navigating a mine field.  He had more falls associated the unpredictable and immediate need to urinate than anything else.  One night he got up to go the bathroom and I awoke to a death crash and water spraying everywhere.  He had lost his balance and fell wedged between the wall and the toilet.  He ripped the toilet paper holder out of the drywall, broke the water pipe to the toilet and was found in the most kerfuffled predicament with his skimmies around his ankles I have ever seen.  I hope there are replays in heaven.  Because although in the moment it was an awful fall, I believe it would make for comedy gold on replay.  So here's a quick clip about the use of external catheters:

I went back to look for a picture of Jonathan after he fell that night.  While scanning pictures I found these taken the evening before he fell and a few of the bruises after.  Seems like a lifetime ago -

This photo golden nugget is a random finding of a picture of 

Jonathan with Dr. Richard Huffaker (longtime buddy).  

1.  He is the reason we were able to get an ALS diagnosis.

2.  Rich is an ENT.  That means he has been with us every step of the way.

He placed the trach.

He changes the trach.

He does house calls on Valentine's Day @11pm to stop bleeding.

He drafts prescriptions in holy places. 

3. Never a truer brother in the brotherhood.

4.  If the earth were filled with Huffaker's all would be right in the world.

And below - a smidge of war wounds from water pipes and toilet paper rolls.

All you ALS people know these battle wounds well.

Team Gleason Shower Chair

 This is the shower chair we use for Jonathan.  It was gifted to us from Team Gleason (teamgleason.org).  Showering a person with ALS is straight up terrifying at times.  Before our roll in shower was built we used a tiny corner shower to shower Jonathan.  We actually preferred the tiny shower because as Jonathan's balance was waining he could lean against any one of the walls for support.  He did fall several times in the small shower and getting him out was an Olympic sport.  Once again, if there are rewinds in heaven... Oscar winning drama/comedy.  

Once the larger shower was built we started showering him in that bathroom, but with wide open spaces you have nothing to catch your fall, and like a friend with ALS once said, you are like a tree trunk going down.  Jonathan cracked the floor tile with his head on one such shower day.  (Scroll fast if open flesh wounds gross you out.)

And so getting a shower chair that Jonathan could sit safely in while we shower him was huge.  Extremely huge.  It was gifted to us from Team Gleason.  It is a NUProdx Shower Chair.  Here's a quick video about the chair:

I cannot begin to describe the good Team Gleason does in the lives of person's living with ALS.  Steve Gleason, former NFL football player for the New Orleans Saints, was diagnosed with ALS in 2011.  Since that time he has paved a road for person's with this disease unlike any other of our contemporaries.  This man's works is absolutely unparalleled.  If you want to do a good thing, donate to Team Gleason.  Don't doubt your donation.  Don't second guess your gift.  The work of Team Gleason is intimately powerful in ministering to the needs of disabled people.  Hats off to you Gleason Family.

#als #teamgleason #nuprodx #showerchair

https://teamgleason.org/

https://www.nuprodx.com/