Saturday, July 21, 2002 9 pm
Toni gave me the checklist report!
Sunday, July 22, 2002 8:30 pm It was a very emotional
goodbye today as Jim and Betsy left. Betsy gave him a little box which she
said was filled with "healing kisses." He cradled that box throughout the
day today. He loved seeing Betsy and his Dad.
Daniel took a 3 hour nap today. He can now scribble a little so he is able
to ask specific questions like "What did my x-ray reveal? (that was done
yesterday...) He seems to understand most everything that is said to him but
the retention problem is still there...(short term memory loss...) By the
way, the x-ray revealed that his lungs are looking better...
Toni described Daniel this way, and I think it tells alot about his state of
mind these days. He is very much like a little infant in some ways. He is
very emotionally fragile and can get anxious very easily. He is very fragile
in that too much stimulation is not good for him right now. Yet he is very
much the kind, thoughtful Daniel we all know. For example, he hates his
Heparin shots that he has to get twice daily in the stomach to prevent blood
clots. Once Toni told him why he needed these shots, the next time the nurse
came in and was preparing the injection, he tried to assist by trying to
raise his shirt. It seems that when he understands the rationale, he is
better able to deal with all the frustrations he faces. He wrote to Toni
that "I feel like an invalid..." and Toni explained that right now he
is...yet he is remarkable better than he was a few weeks ago. He is on a new
medication for sleeping and he slept very well last night. Toni is so
thankful that Daniel is better...but he has such a long way to go. Recovery
will be a slow process...
Monday, July 22, 2002 9:30 pm Toni described today as a
"fragile" day. She stayed at the hospital from 8 am - 10:15 pm...and then,
when she was leaving, Daniel asked her to come a little earlier tomorrow. He
said that "it is hard to be alone." Again, he seemed frustrated with the slow
communication however he is able to communicate with writing, even though it
is often a scribble. He was off the respirator for 7 hours today. He
watched "Circle of Friends" today and had a little ice cream. Apparantly he
can eat a little taste of ice cream, sorbet, water, and suckers. Tonight,
when Toni left, she gave him a pad of paper with pen, his glasses, his CD
player with earphones, and a tv/lights controller.
On Jim's flight home (which involved some missed planes, bumping, etc.), he
connected with the product manager from Rhino records, who offered to send
Daniel some "Rhino" releases. When he recovers, he also offered a tour of
the Rhino records company in LA. Apparantly, Jim said that this was bright
spot in a day of cancelled flights and waiting to get home...
Tuesday, July 23rd 10 pm This is a high frustration time for
Daniel and Toni. Toni worked with Daniel on "patience and porportionality"
today where he could learn to separate his frustrations into a 1-10 rating!
When the oxygen tubes fell out, that was a 10; vomiting was a 9... and
having a itch that needed to be scratched was a 6 in Daniel's eyes. Toni
gently tried to explain that in the world of the ICU (and what he has been
through), an itch certainly had to be a little bit lower on the scale! (Can't
you just hear Toni's voice talking to him!)
He was off the
respirator for 12 hours today, a major feat...and he asked to be taken off 24
hours! He knows that he cannot go to rehab until he is off the respirator
and the vomiting is under control and he can digest and eat solid foods.
Tonight, he had food for the first time and although it was puree, it still
was food...but then again, he could not keep it down. It will take some time.
Tomorrow is another day...
A representative from Sunnyview Rehab came by to see Daniel today and asked
him if he had any questions. Daniel asked how many brain injured patients
were there (answer = 17 and many his age). He asked if he could wear his own
clothes (yes) and he also asked if he would have any free time..
Today the CEO of the hospital came to the ICU since they are doing a
promotional program on the ICU staff...and Daniel told him that they were
outstanding. Dr. Kuehler came by and Daniel confessed to her that he felt
like he was "losing the battle" --only to be reassured how far he has come
along the road. Dr. Sacaris also came by and loosened the collar on the
trach so that he could talk a bit.
He is very excited about taking the next step into a residential acute
rehabilitation facility but there is no word how soon that will be... More
tomorrow...
Wednesday, July 24, 2002
Today was a really good day!
Daniel sat up in the "barcalounger" chair, a welcome relief from the long
hours in bed. Today when they were scheduled to go for a CATSCAN, Daniel
wore a big red nose and this overstuffed, Mrs. Claus slippers. On the ride
down the hall, as everyone was laughing, Dr. Sacaris came out into the hall.
She acknowledged the nose (which she had seen before...) and then Daniel
directed her attention to his slippers. At that moment, he used a make-shift
"squirter" to complete the clown attire and managed to surprise Dr. Sacaris
with a quick stream of water!
He is trying to stay off the repirator for 24 hours tonight. He started at
8:30 this morning and when Toni left at 9:15, he was still off. He did not
nap today so everyone hopes he will sleep through the night. They will be
monitoring his pulse, heartbeat and breaths per minute throughout the night
and if he is in any distress, the respirator will go back on. If he can wean
himself from the respirator, then Toni will have greater flexibility to wheel
him around the hospital.
Today he tried three meals (and he fed himself!) but Toni described it as
tuna salad, chicken salad and macaroni salad all pureed into one. Dr.
Sacaris offered to make rice pudding for him tonight! Toni asked Daniel what
he last remembers and he said that he remembers standing the the parking lot
at Bard, discussing what cars they had to take. He was surprised that he was
driving and that he was alone.
Dr. Brian Fallon, a resident, came by today, as he does every day, to check
on Daniel. (This is the doctor who also gave Daniel the Jet's hat and made
the CD cover for Daniel's gift CD...)
Toni bought Daniel some colors and "dot to dot," search a word, and word
puzzle books which he seemed to enjoy. Rev. Roy Donkin also came by today,
as he does regularly to chat with Daniel and the family. His daughter
attends Bard with Daniel. He will be moving to a congregation in Santa
Barbara so Jim has promised to treat him to his first Dodger game.
Emily arrives tomorrow; and this weekend K.C. is coming for a visit (he is
his friend from Bard who lives in Michigan.)
Thursday, July 25, 2002 9:30 pm Emily (sister) arrived today at
around 7:00. She was able to visit Daniel and he mouthed "I love you" to
her. Toni and Daniel played some games of hangman. One of Daniels words was
"Colonostomy", and he had to give Toni a bunch of hints before she got it.
Daniel now seems to be permanently off the ventilator, in fact they took it
completely out of the room. The doctors say the more he is off the
ventilator the sooner they can put him onto a "talking" trach. The one he is
using now is very difficult for him to to speak. Overall it was a restful
day including 3 meals and some rice pudding that Dr. Sacaris made himself (the
pudding is reported as being very good). Daniel likes to be wheeled around
the hospital although he rarely gets the chance. Hopefully being off the
ventilator will help his mobility. With help Daniel is able to sit up in
bed.
Thursday, July 25, 11:45 pm Jeff and I are stuffing the last few items in our bags as we head for Seattle tomorrow. Amy, Jeff and I will be joining Jeff's family at the Hood Canal on the Puget Sound. Mindy will continue to keep you up to date...and we will be checking in as well. Mary Ann Laun
Friday, July 26, 7:00 am Jim talked to Daniel today for about 25 minutes. (They plug the hole of the trach so that Daniel could vocalize.) Jim asked him how it was to talk and Daniel said "liberating." Jim talked to him about his concerns about any neurological damage and Daniel said that he feels so great and he personally felt that he is OK. Daniel said that he is concerned about short term memory but does not think it is too bad. He is excited to go to PT and rehab...Daniel said that he is still interested in music and that he really enjoys the Diana Krall CD that Michael Hawkins sent. Now Jim said perhaps he can get him interested in Emmy Lou Harris...but Daniel said..."ah...I don't think so!" They had a wonderful conversation and Jim felt it was well worth a "morning report!"
Friday, July 26, 9:30 pm It's offical that Daniel is being discharged from the hospital on Monday. They'll take him by ambulance from the Albany hospital to Sunnyview rehabilitation hospital. Today Daniel's music professor, Luis Garcia Renart, visited and Daniel got to talk to him. Daniel was very happy to see him. They put a new trach in called a "Steel Trach" which makes it so that Daniel can talk. He talked all day today. As the day went on Daniel's voice started to sound more like Daniel. Once word got out that he could talk and that he was leaving on Monday, a lot of the medical staff came by to say hi and goodbye. They took Daniel outside today. He was excited to do that. He had physical therapy today, he still has a tube for feeding even though he is eating three meals a day. He is taking his pills by mouth now instead of through the tube. The Fisher house is going to let Toni stay there. Daniel is excited about rehab but at the same time he is nervous.