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.