He woke up!

I’ve read that intubation was the final step for ALS patients so I was incredibly sad.  This all happened so fast and though we had conversations about what to do if this happens I wasn’t prepared.  I texted the update to JoJo and my mom. I made the hard call to Branden telling him to wake his siblings and tell them I needed them with me.  He was calm and collected like always and said he would gather them and come to the 4th floor.   Seemed like they were all there within minutes. We were only allowed in Jeans room by twos.  Taking shifts to and from the waiting room throughout the day.  So many friends stopped by I needed them and they were there!  JoJo stayed in the waiting room all day! It was one of the saddest days of my life.  The kids and I went home that night as the hospital suggested I had been up all night and they didn’t have a great solution to offer me.  We cried, I showered, we cried some more. My gut was turning at the thought I’d have to make a tough decision the next day.  The pulmonologist on duty told me to prepare as he was a critically ill man who stopped breathing.  She said we will wake him slowly and try to remove the tube next day…if the attempt failed I would need to decide if they would do a tracheotomy or honor his DNR.  My thoughts were heavy but I did sleep! I was exhausted.  I woke at 4:30 and got ready to return to the hospital.  All the kids woke up too and wanted to be there early.  The morning went on and the pulmonologist decided to lighten Jeans sedation.  I walked into the room at one point and the nurses were waking him up.  Scared with giant eyes looking at me, I walked over to him, put my hand on him and told him he needed to be calm, he had a tube in his mouth preventing him from talking and everything was okay!  He calmed and responded to questions by simple nods.  I cried and felt relief to see him awake again.  

Since moving in with us, Makenna has been right on top of his health-asking him the questions like how much has he eaten, has he had enough to drink and how was his sleep.  I worried how she would do seeing him like this, wide awake and alert with the tube still in.  She was emotional too!  We didn’t expect it at all.  She switched out with Branden and his strength and confidence was awesome.  Jean was trying to talk but couldn’t so Branden offered his phone to use the tablet part so Jean could try to write to us.  It was comical actually trying to figure out what the scribble was along with the eye movements and hand gestures.  Remember, he wasn’t having much in the way of conversations in the weeks before so the attempts to ask questions was so refreshing we were high off the fact he was awake but more high that he was the one asking questions for a change!   “How long have I been here? Am I in Biddeford? When is this coming out?  Tell me what happened.”

I don’t know if I could have been awake with that tube in my throat…he did it all day, never napping!!  If that doesn’t give a sense of his strength and determination I don’t know what does!  

The night before, as I left to go home, I mentioned to the night nurse that I failed to tell anyone that Jean wore contact lenses….I didn’t know if that was an issue.  We finally figured out with the hen scratching and gesturing that he couldn’t see the tv or read the time on the clock.  That’s when Branden decided he would make a trip home to let the dogs out and grab a iPad for a bigger screen and glasses for Jean.  We were out of a state of complete worry and now grasping for anything we could to make the awake time easier.  He was awake but still intubated that entire day!!  He had visitors and would attempt to answer their questions or even ask questions with a nod or gesture and honestly it was a delight for me to see him so interactive.  My sweet cousin Shannon came in and offered to run to staples for a white board and marker as the phones and iPads were a pain.  He would touch another part of the screen and the cursor would jump so the writing wasn’t easy for Jean.  That white board became a lifeline we could never have imagined!  (Thank you so much, Shannon) The guy was trying to entertain as people they entered - asking questions and making funny comments in full sentences as he wrote and rewrote when we were having trouble deciphering his scribble.  The mood had lifted and we were all feeling so hopeful.  I shared how scary it was with him and told him I knew it was all the prayers!  His eyes were different - less lost and more connected to me when we talked.  I didn’t know where we were headed but I sure liked where we were!  The whole day he was wide awake!!  I left that night with a different kind of tears…hopeful ones!  Anxious for the next day!

❤️

~kel~