1. Will now eats regular food at every meal.
2. Will can drink "thin" liquids without aspirating.
3. PEG (feeding) tube is removed.
4. Will's speech becomes understandable.
5. Will begins to initiate activities on his own, mostly reading.
6. Will shows increased control of his soft palate--a promise of better speech to come.
7. General alertness increases over the month.
Monday, March 31, 2008
Saturday, March 29, 2008
Graduation Day
Will asked how far he'd gotten in school. "Why?", we asked. Because he couldn't remember graduating.
"Yes, you graduated. You got an M.D. Now you're a doctor."
A few days later he said he still couldn't remember graduating. "But there were witnesses. Mom and I were there and watched it happen." "And you must have a diploma." (But that's still in Columbus.)
A few minutes later Will brought out his computer. We looked through his photos, and there they were: pictures Will took at the Shoe, including one he took of himself. The pictures unlocked his memory, and now he could remember that President Clinton gave the address, and he was one of the first in line when the graduates filed out.
"So Will, now do you believe you graduated?"
"Hmmm. I'm not sure. But it does prove I was in the line."
"Yes, you graduated. You got an M.D. Now you're a doctor."
A few days later he said he still couldn't remember graduating. "But there were witnesses. Mom and I were there and watched it happen." "And you must have a diploma." (But that's still in Columbus.)
A few minutes later Will brought out his computer. We looked through his photos, and there they were: pictures Will took at the Shoe, including one he took of himself. The pictures unlocked his memory, and now he could remember that President Clinton gave the address, and he was one of the first in line when the graduates filed out.
"So Will, now do you believe you graduated?"
"Hmmm. I'm not sure. But it does prove I was in the line."
Spring Workout
I asked Dr. Edgley what physical activities were ok for Will. Could he jog? Could he run?
Dr. Edgley: "Will, can you run?"
Will: "I dunno. I can't remember trying. I don't see why not."
So this afternoon Will and I went to the Bountiful High track. Will took off like a jackrabbit. I hoped he couldn't keep it up, 'cause I knew I couldn't. After half a lap Will looked over his shoulder to see me struggling, and took pity. He slowed down to a manageable (for me) pace and we enjoyed a few more laps on a brisk, sunny afternoon.
Dr. Edgley: "Will, can you run?"
Will: "I dunno. I can't remember trying. I don't see why not."
So this afternoon Will and I went to the Bountiful High track. Will took off like a jackrabbit. I hoped he couldn't keep it up, 'cause I knew I couldn't. After half a lap Will looked over his shoulder to see me struggling, and took pity. He slowed down to a manageable (for me) pace and we enjoyed a few more laps on a brisk, sunny afternoon.
Friday, March 28, 2008
Say "Ahhhhhh"
Wednesday was a great day for Will and for all who have been praying for him. He got up, ate breakfast, showered, shaved for the first time, put in his contacs, skunked his mom at several games of "Fish," and waited for his speech therapist to come.
When she came, she asked him to say "Ahhhhhhhhh." She was looking in his mouth while he did this and was totally blown away. The muscles of his soft pallet were lifting! Hallelujah!!! That nasal tonality in his speech was no longer his only option. He could actually speak through his mouth like an Englishman rather than through his nose like a Frenchie. He was then asked to read an article from the Salt Lake Tribune about the war in Iraq. He broke it up into small segments and read each one until he could do it clearly and distinctly. The result was very intelligible speech.
His homework was to continue saying "Ahhhh," in front of the mirror so he could make sure his soft pallet was getting a good work-out and practicing his elocution strategies in every day conversation.
When she came, she asked him to say "Ahhhhhhhhh." She was looking in his mouth while he did this and was totally blown away. The muscles of his soft pallet were lifting! Hallelujah!!! That nasal tonality in his speech was no longer his only option. He could actually speak through his mouth like an Englishman rather than through his nose like a Frenchie. He was then asked to read an article from the Salt Lake Tribune about the war in Iraq. He broke it up into small segments and read each one until he could do it clearly and distinctly. The result was very intelligible speech.
His homework was to continue saying "Ahhhh," in front of the mirror so he could make sure his soft pallet was getting a good work-out and practicing his elocution strategies in every day conversation.
Tuesday, March 25, 2008
PEG tube came out today !!
Will was early to his GI clinic appointment at 11 am, and they took him in right on time. Will's appointment was with Mary O'Rourke, a Physicians Assistant-Certified. She made a call to Columbus to find out what size tube Will had in his stomach, and then asked Will if he minded if she invited a student in to watch the removal. Will said he had no objection, explaining that he had once been a medical student too.
I had volunteered not to watch the insertion of the PEG tube, but I thought I could stand to watch its removal. The procedure for removal is to grab the tube and pull really hard until it pops out. I could've done it, but was sure glad I didn't have to. For a brief moment it looked like Will's innards were being extracted from his abdomen through a very small hole. Mary warned that it would hurt really bad, but only briefly. Will's OW! told us her description was accurate.
Will takes one adult aspirin a day, so they expected some bleeding, and got it. Another nurse came in to apply pressure to the tube site for 15 minutes. After that time the bleeding had stopped. They put new gauze and a pressure bandage on him, and we were free to go home. The bandage can be removed after 24 hours. The site heals from the inside out, and there are no restrictions on what Will can eat while it's healing.
I had volunteered not to watch the insertion of the PEG tube, but I thought I could stand to watch its removal. The procedure for removal is to grab the tube and pull really hard until it pops out. I could've done it, but was sure glad I didn't have to. For a brief moment it looked like Will's innards were being extracted from his abdomen through a very small hole. Mary warned that it would hurt really bad, but only briefly. Will's OW! told us her description was accurate.
Will takes one adult aspirin a day, so they expected some bleeding, and got it. Another nurse came in to apply pressure to the tube site for 15 minutes. After that time the bleeding had stopped. They put new gauze and a pressure bandage on him, and we were free to go home. The bandage can be removed after 24 hours. The site heals from the inside out, and there are no restrictions on what Will can eat while it's healing.
Ohio and the Ties that Bind
Monday was a great day for Will. Two of his buddies from Ohio, Chris DeMoux and Christian Bahr, dropped by with boxes from Riverside. Chris brought framed pictures of some of Will's fellow residents, a BYU Cougar, a red monkey, Melanie’s hospital troll, Will’s contacs and a silk flower arrangement from Marilyn Neilson. He also promised to send Will some Buckeyes if he wanted them. Christian brought the OSU blanket, Katie Vasil, one of the residents made and the Rachmoninoff CD Dr. Glasgow had given him. It was so good to have these favorite items back in our possession.
Chris told Will they would miss him at the next Elder’s Quorum activity, a March Madness dinner featuring Pizza and Wings. He also said the Relief Society had consented to allow the Elders to join their book group provided they could recite a poem first. The book to be read is The Chosen, but the poem was not stated. Will had already read The Chosen, and gave two thumbs up to the Relief Society’s selection committee. He would love to be there for the discussion. Also on Monday Will worked out on the bowflex, did a crossword puzzle with Mom, played the piano, played basket ball with Nate and Jess and agreed to working on shaving tomorrow. (Jeremy's challenge for a beard-out continues to be a bit of a priority, thus the perpetual procrastination.)
Chris told Will they would miss him at the next Elder’s Quorum activity, a March Madness dinner featuring Pizza and Wings. He also said the Relief Society had consented to allow the Elders to join their book group provided they could recite a poem first. The book to be read is The Chosen, but the poem was not stated. Will had already read The Chosen, and gave two thumbs up to the Relief Society’s selection committee. He would love to be there for the discussion. Also on Monday Will worked out on the bowflex, did a crossword puzzle with Mom, played the piano, played basket ball with Nate and Jess and agreed to working on shaving tomorrow. (Jeremy's challenge for a beard-out continues to be a bit of a priority, thus the perpetual procrastination.)
Saturday, March 22, 2008
PEG tube; New meds
Last Wednesday was the six-week anniversary of Will's PEG tube (feeding tube) insertion. Six weeks is the minimum time it had to stay in to prevent scarring. The therapists observed that Will was making great progress on being able to drink thin liquids (e.g., water), so they alerted Dr. Edgley and we went to him on Thursday to get his assessment about removing the tube. His conclusion was that the tube could come out that day. We tried to get an appointment for that afternoon, but had to settle for a time next Tuesday.
PEG tube removal is a prerequisite for the heart procedure. We have a call in to the Cath Lab to set that up for next week.
Dr. Edgley also made some changes to Will's prescriptions. Will will begin taking a number of over-the-counter supplements. He is also taking Aricept now to help his short-term memory. The benefit of that appears over the long term after steady use. The third change is to substiture dextroamphetamine for Provigil to help Will's alertness. Provigil is a newer formulation without much history of its benefits. Dextroamphetamine has been around longer and has been shown to have benefits for cognition.
PEG tube removal is a prerequisite for the heart procedure. We have a call in to the Cath Lab to set that up for next week.
Dr. Edgley also made some changes to Will's prescriptions. Will will begin taking a number of over-the-counter supplements. He is also taking Aricept now to help his short-term memory. The benefit of that appears over the long term after steady use. The third change is to substiture dextroamphetamine for Provigil to help Will's alertness. Provigil is a newer formulation without much history of its benefits. Dextroamphetamine has been around longer and has been shown to have benefits for cognition.
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