Day 24: ABC. Easy as one, two, three. - Friday, April 6, 2012

ABC.Easy as one, two, three.Or simple as Do, Re, Mi.

So.... As you might have guessed, Scott did indeed receive his new Jackson Five trach today!  Dr. Su was quick and awesome.  No pain, no flinch.  Easy as one, two, three! The trach is plugged, so he is now breathing both in and out of his mouth. His voice sounds much more normal now.  Not completely normal, but, much more so.  His breathing and talking are more effortless.  He did have some hissing early in the day as the air passed around the new and smaller trach, but as the day progressed, we no longer heard the hissing.  It amazes me that it heals over that quickly.  Dr. Su plans to remove the trach completely on Monday or Tuesday.

He will have a large scar on the front of his neck, but no worries.  The biggest risk is stenosis, narrowing of the trachea, as it heals.  The risk for stenosis is greater for a surgically inserted trach, as Scott had, but is less if they downsize the trach prior to removing.

Scott continues to amaze us and the staff with his daily progress.

Speech therapy:  He progressed to soft mechanical foods today.  He does have delayed swallowing, but otherwise his tongue and mouth are moving normally now.  Scott has had an impressive appetite, requiring extra snacks, etc.  We are having to work with him on eating slowly and with small bites/ sips.  He likes to inhale and guzzle, but he is at definite risk of choking due to his delayed swallowing response and due to having to swallow around the trach tube. He requires fairly constant cueing currently to slow down.

Scott made huge improvements on his cognitive assessments today.  His word retrieval is still slowed, but improved.  His concentration made huge improvement today.  He aced all of the number challenges.  He was quick and sharp and accurate with the numbers tests.  When he was asked to repeat word groupings both forward and backward, he not only repeated the word groupings backward, but also spelled each word as he was repeating them.  Although, he had to have the instructions repeated several times.  He remains quite impulsive.  Scott and Ashley were able to play a card game that focused on sorting cards by shape or color.  He played the game twice, and showed improvement rather than fatigue on the second game.  His therapist and family were thrilled to see the progress between today and yesterday.

Physical therapy is focusing on walking and strengthening.  Gait patterning is big educational focus with Scott. He has a lot of gait abnormalities to work on.

Occupational therapy is focusing on ADLs (activities of daily living), such as showering, dressing, and grooming skills in the morning.  The afternoon is dedicated to his right shoulder and arm rehab.  The therapist applied a pillow splint on his right elbow after we discussed options to prevent contracture (permanent loss of motion) of his right elbow due to the hypertonus.  The hypertonus does not allow Scott to extend his elbow.  His preferred position if for his right arm to be curled up and into his chest.  He is able to move out of all flexed joint positions, except for the elbow extension.  We feel that he would fight a hard splint on his elbow and it would further interfere with his sleep, so... She literally taped a slim pillow firmly around his elbow.  He is able to flex still but he rests his arm much straighter than he has been... and he is tolerating it well.  He does not fidget it at all, so I think we have a good option for him.

He has had 2 nights of good restful sleep now!  Wahoo!  He does still awaken, and he still tries to bolt out of bed, but it is for a reason (to go to the bathroom, or needing some trach work done), then he returns right back to a restful, peaceful sleep.  Wrestlemania appears to be a thing of the past!

Brother Ryan has been here visiting and helping! Thanks, Ry!  He had a fun night tonight with Scottie.  We actually had a little down time tonight before dinner.  Ryan pulled up music on his computer, Scott and Ryan sang along.  Scott's singing isn't what it was, (singing might even be the right word choice), but he was able to remember the words to some of his favorite songs.  They watched a few comedy sketches together and laughed.  It sounded so good! Ryan pulled up a video of the Tim Hawkins song, "Things you don't say to your wife.". It is hilarious! If you have not heard it before, give it a listen! Here is a link to the video on YouTube.  Scott played his guitar and sang this to Ryan at Ryan's wedding rehearsal dinner last November.

Ashley gave Scott a shave today.... It's quite the process, but is getting easier with the fewer tubes to work around.

Each day cotinues to give us new victories!  We are very grateful for and encouraged by his recovery rate.  We are very mindful that this rate of recovery won't last forever.  Things will slow down.  He will have plateaus.  And ... It will be hard when we don't have the daily victories to lift us above our emotions and exhaustion.  We are grateful for this blessing and tender mercy now, however, ......that the victories, the obvious hand of the Lord,  and the support of friends and family have kept us strong during these early and difficult days.

Love to all! Will talk again tomorrow!
Patti