Saturday, July 13th 7pm Jim arrived in Albany tonight and wsaid it was so wonderful to see Daniel...and to see Daniel looking like himself again. Daniel wanted to say something to his Dad, so he pointed to himself, made a heart, and then pointed to Jim. It was a wonderful moment for all of them. Stats were good today; they repositioned his bed so that he was in a sitting poition and Toni asked him if he would like to look out of the room to get his bearings. He mouthed the word WOW as he looked around the ICU. Jim said that he does indeed more very, very slowly ...and it is hard to visualize this when we are so far away. Daniel squeezes Toni's hand when he wants to spell something. Even though his movements are deliberate and slow, Daniel was motioning with his other hand for Toni to speed up the alphabet. Jim fed him some little tastes of sorbet and helped him with his bath. More Harry Potter today and CDs. Toni reminded him where he is, about the web page and that there are almost 40,000 hits on the page. Daniel's eyes showed his amazement.
Sunday, July 14th 9 pm Jim reported tonight that today was a rough day for Daniel. He is getting sick when they suction him to remove excess fluids. (I remember when my Dad had pneumonia, this was a most disagreeable procedure and one that he also hated. Although Daniel is getting sick during this procedure, I am sure he is also sick OF this procedure as well!) He also has a slight fever from the urinary tract infection. Hopefully tomorrow will be a better day...
Monday, July 15th 7 pm Yesterday and today were stress-filled
day as Daniel's parents watched as Daniel worked hard to communicate.
Communication is rudimentary and frustrating for both parents and Daniel.
Daniel had physical therapy yesterday and Toni said that Daniel has made
steady, slow but amazing progress. Therapy can consists of lifting his arm 5
times; he can now reach his face. This is major progress although it takes
all the energy he can muster. Yesterday, the Doctors took Daniel off the
respirator twice for 5 minutes each time. They continued to give him oxygen
since his muscles in his diaphragm are atrophied and weak, like the other
muscles in his body.
Today Daniel was off the respirator for an hour in the morning. (Still on
oxygen though...) In the morning, he had PT (Physical Therapy) and then the
nurses decided to wheel him outside for a little while. Now, this is a major
ordeal taking at least an hour and a half. They moved him to a movable
bed/chair/lounge with wheels, got the auxiliary oxygen hooked up and Daniel
saw the outdoors for the first time since May 3rd. He was off the respirator
2 1/2 hours before he indicated to Toni that his chest hurt. There were also
tender moments as Daniel reached out to touch Jim's hair...and when Toni
asked him if she could give him a kiss...he shook his head "no"...and then
with a smile, indicated that he was just teasing her. A lot of coughing today
as well...but he enjoyed a few tastes of an orange tootsie roll pop.
Tuesday, July 16th, A Letter from Jim Fox
Dear Friends:
It was so good to see Daniel on Saturday night. He looks like himself again
except thinner. Tears of joy came immediately just like everyone had
predicted. I really miss the boy.
His progress has been amazing but he has so very far to go. Toni & I get to
do physical therapy with him. He works very hard but gets exhausted just by
lifting his arm, with assistance, five time. Spending two and a half months
on your back in ICU will do that to you. Toni tells me that just one week
ago he couldn't get his arm up two times. Yesterday he was able to adjust
his hat and scratch his face. This was a big deal and I don't think I will
ever take simple tasks like those for granted again when I see the effort he
has to put into it.
We are please to see that the Daniel we know and love is still here. He is
kind and loving to everyone and his sense of humor is alive and well. He is
very popular with the nurses and has smiles for all of them. We can't say
enough good things about the quality of care in the ICU at Albany Medical
Center. Besides being extremely competent, the nurses are kind and caring to
both Daniel and us. They have become like family to us. (I don't want to
sound like I am shorting the doctors. They are great too, but we don't have
the minute-to-minute contact with them.)
Communication is a bit of a problem. Daniel seems to understand everything
we say, but Toni and I aren't too good at figuring out what he is trying to
tell us. He get frustrated to tears at times and we feel very inadequate.
Hopefully, Toni and I will develop more language sensitivity so the process
can move smoothly. Daniel's responses to questions take a little time and he
can't remember anything since the accident, but I am very hopeful for a full
recovery.
The medical staffing is pushing him by getting him out of bed and outside,
weaning him from the ventilator and increasing physical therapy. This
usually means we are getting near the ICU phase of his recovery. The doctors
will make the medical decision when it is time to go, but we are getting into
rehab questions with Daniel's case manager. Nothing has been decided about
where the rehab will be done. We prefer SoCal, but it will end up being a
dollars and cents decision. After rehab Daniel will have three more
surgeries for the aorta, skull and face. I wish for a magic wand to fix it
but I pray for patience and healing.
Toni and I are very grateful and thankful for all of the kind, decent people
who have been with us on this journey. The generosity, care and concern we
have experienced have brought us to tears more than once. My mildly cynical
view of the world has been put to rest. Over time we hope to be able to
thank everyone personally. Until then, I will thank the Lord for your
kindness.
Sincerely, Jim Fox
Tuesday, July 16th, 9 pm update I spoke to Toni and Jim tonight
and today was a rough day. Daniel hadn't slept for the second night in a row
and he was exhausted. It is unclear whether or not the sleeplessness was from
the drug weaning, or perhaps all the activity lately...but he definitely had
signs of both, including shaking, chattering, and excessive hand movements.
Toni and Jim tried to watched My Cousin Vinny (with Daniel)...but still no
focus nor sleep this afternoon. A couple of chapters of Harry Potter were
read ... but he still seemed so restless.
Toni and Jim decided to play a tape that Katie Eifert and the Pep Band sent
to Daniel with their music and individual messages of cheer. This was the
"miracle drug" for today...it drew his attention away from his restlessness
and he focused in on the tape. As they spoke on the tape, Daniel would try
and wave to them...often trying to conduct the band and to simulate playing
piano along with them as well. They enjoyed it so much that they watched it
four times in a row! The doctor's placed him back on a sedative tonight (and
as Toni ad Jim have said, Daniel likes to take things at his own steady, slow
pace). The sedative they gave tonight will wear off by tomorrow and they
will be watching him closely, as always. When they left for dinner and then
came back, Daniel was sound asleep (at 9 o'clock).
One of the doctors is a big Jets fan so he brought Daniel a Jets hat. Daniel
adjusted the brim and wears it proudly. Another nurse Emily gave Daniel a CD
of the Harry Potter soundtrack. Make sure you see the new pictures on
Daniel's page.
Wednesday, July 17th, 7:30 pm Daniel was sedated last night and
slept well, but when he awoke he was very agitated. Toni and Jim were called
to come over from the Fisher house. He was so agitated he even tried to
throw his pillow. He was medicated and slept most of the day. When awake he
was quite confused. Toni explained when happened and that he was in the
processing of recovering. Daniel was able to whisper a word "When". Later
Toni explained that he would be going through rehab. Daniel said "whats
rehab", Jim said "it is rehabilitation", Daniel then gave him a look like
"you idiot" I knew THAT.
Since Daniel slept most of the day, Toni and Jim were able to play some Gin.
Toni won 8 straight games, then Jim won 2 and Toni finished Jim off with a
final 9 to 2 game win.
Thursday, July 18th 9:30 pm Jim called when Jeff and I were at a Drill team meeting at First Avenue...but his message was that Daniel had a good day. They removed the trach and the collar...and Daniel spoke his first words to his Dad "I love you too." Betsy arrived today (courtesy of the nurses there who took up their own collection) and then the nurses sent Jim and Toni out to a French restaurant while Betsy entertained Daniel with funny "jim-stories." Toni and Jim were so happy to see Betsy and Daniel enjoying each other, once again. Emily is due to arrive next week, courtesy of Jim and Karen Tanner and their frequent flyer miles! Jim sounded tired when he called...and he said it had been a long...but good day. Daniel was very alert this morning and was very interested in the rehabilitation options. He may have to have rehab there in New York, since the medical transport to California may be prohibitive. Daniel was disappointed, and longs to go home...but understood. They are looking at all the options, on both coasts, before they make a decision. The unit and Daniel may be in the hospital publication fairly soon...
Friday night, July 20th, 9:30 pm Oops! Sometimes I think my eagerness to have Daniel progress skews the reality of what I hear. I was wrong about the trach...the trach is still in, but the inflatable collar that holds it in place was released a bit and that is how Daniel was able to form words. Yesterday he was off the respirator 4 hours; today 5 hours. It is still a slow process as Daniel is frustrated with his inability to communicate. Jim said that it seems that Daniel is doing better neurologically than physically...He is still getting sick when he has to have the suctioning...and coughing, hacking a bit...but that is progress as the congestion breaks up in his chest. He has a new sleeping medication. His lungs seems to be functioning well with him taking in 100% oxygen. He is tired... He was concerned that he needed a plane when LA to Bard. When he heard that he wouldn't be returning to Bard in the Fall, he was disappointed...and then remembered that he needed to tell them that he wouldn't be available to be a peer counselor in the Fall. Jim and Toni told them that Bard knew all about his accident and looked forward to the time when he could return. Jim said that Daniel has been accepted at an acute care rehab center in Schenectady that specializes in traumatic brain injury patients. This will be the first place he goes when he leaves the hospital and Jim and Toni seem pleased with this decision. Jim and Betsy are returning to California on Sunday.