Saturday, November 16, 2002
Daniel didn't get a hospital bed until 11:00 pm last night and it was on the
Pediatric Floor. Toni says the nurses have been very nice.
They are giving Daniel Tylenol with codeine and antibiotics. The Tylenol
with codeine keeps his cough down and helps with the pain from the aortic
transection. Daniel woke up with a fever of 102 but it was down to normal by
the afternoon. His heart rate is high and his white blood cell count is high
but other than that his vital signs are normal. Daniel didn't get any food
yesterday, but is getting small amounts of bland food today. The hospital
treatment may take a few more days than I thought yesterday, but Toni says
she is still going to be home on the 26th.
Toni and Daniel took a wheel chair and went for a walk to see the snow fall.
It is a beautiful snow fall, especially from indoors. They went to the
pedestrian bridge to watch the snow and ran into Dr. Sacaris and had a nice
talk. Dr. Sacaris told them about a 20 year-old in Daniel's old room who was
in a very serious accident and was on a respirator. Toni and Daniel made a
trip to SICU and spoke to the young man's parents. I don't know what was
said, but Toni is usually able to come up with the right words of comfort and
encouragement. While in the SICU they also got to see Bernie (he still had
lipstick on his cheek courtesy of Bernie), Lou and Shri.
When I spoke directly with Daniel he said he was "feeling fine" and wants to
get out of the hospital. He has had enough of the institutional life.
Anyway, progress is being made. The two steps forward, one step back model
is wearing thin for the Foxes. We would like three or four steps forward
before the next step back. We also want to be together in California before
considering the next step in any direction. Love to all, Jim
Sunday, November 17th...A message from Jim
Toni reports that Daniel had a bad night last night. At about 11:00 pm his
temperature hit 102 again and the oxygen in his blood dropped to 85%. Daniel
was put back on oxygen at 4 liters per hour (?)and is back on nebulizer
treatments. The doctors are treating Daniel as if he has pneumonia even
though it has not been officially diagnosed as such. His IV started to leak
so they took it out and are giving him more fluids orally.
An echocardiogram is supposed to be scheduled but wasn't done as of 5:30.
There was some talk about another CAT Scan but he would have to have an IV
for that one so we'll wait for the echocardiogram results to see if it will
be necessary.
Daniel told him that his oxygen levels are back to normal but shortness of
breath is still a problem. Daniel and Toni were able to walk to the
cafeteria and mail box. It is good to have him walking again even if it
exhausts him.
Toni took time to go the Fisher House for a shower and rest. On her return
she brought Daniel a mocha frapaccino which was a big hit. It looks like I
will be doing the update for a few more days. Please don't get discouraged,
Toni will be back at the keyboard soon.
Thanks to all, Jim
Monday, November 18th...Messages from Edith Leet and Jim
From: "Edith Leet" leeti@crisny.org
To: " Jim Fox" jfox215@hotmail.com
Subject: Just saw Daniel and Toni
Date: Sun, 17 Nov 2002 22:40:01 -0500
Hi,
I just got back from a visit to Daniel and Toni at the hospital, and I
thought you might like a nonmedical report. I think Daniel looks
stronger and has better color than the last time I saw him, in spite of
the current setback. He was in good spirits in spite of a spell of
wracking coughing that made it difficult for him to keep some medication
down. I guess the two "in spite ofs" are the essence of this message.
Both Daniel and Toni are so strong. They deal with the pain and
distress so matter-of-factly and keep their focus on coming home. So
far, they are not changing the plan of "home by Thanksgiving," although
they are ready to do whatever is best for Daniel. We ended my visit with
Toni teaching me the words to "Betty Coed" and Daniel giving me a
"thumbs up" on my singing voice. Toni and I are going to find some songs
we both know to serenade Daniel the next time I visit.
I was sorry not to see you before you went back to Arcadia, but I hope
things are well there.
All best,
Edith
p.s. When you plant a seed, remember that perennials take longer to
germinate.
-----------------------------------------------------------------
From Jim---
Since walking to the cafeteria yesterday, Daniel's strength and wind have
declined. He rode the wheelchair down to the cafeteria last night and again
today to get a sandwich for lunch. His fever made it back to 100 last night
but, otherwise, was doing well until about 8:00 this morning when he had a
coughing fit that lasted about 30 minutes. The coughing causes Daniel to
give back breakfast. Toni thinks the coughing is related to getting behind
on the Tylenol with codeine.
Toni says it has been like old home week at Albany Medical. They keep
running into doctors and nurses who have been involved with all stages of
Daniel's treatments. The people at Albany Medical are really the most
wonderful people. We will miss them. I may not speak to Toni again because I
will be at UCLA until late (for me), but if we connect, I will do another
Monday update. --Jim
Tuesday, November 19th, 2002
Toni reports that Daniel is doing better today. He was able to walk to the
cafeteria twice today and, while still winded, was much stronger. Toni
thinks he is almost back to where he was right after the skull surgery.
Another sign that he is doing better is that he purchased several items from
the hospital thrift store. I can hardly wait.
Daniel had an echocardiogram and a CAT scan today! His heart and lungs are
doing well. There were no blood clots and only a little fluid in the chest
cavity, which apparently is normal after heart surgery. They are talking
about another CAT scan for his legs, also checking for blood clots. Blood
clots could have something to do with the shortness of breath, but I'm not
sure what it is. In the meantime, Daniel is still on oxygen at a reduced
level.
Toni is supplementing Daniel's hospital meals with cafeteria food. Their
food is good at lunch but bad anytime else. This is better than his regular
hospital food which looks bad all the time. He has been switched to a normal
diet so we will see how that goes.
The staff in Peds has been great and Toni is still running into people who
have cared for Daniel and are interested in his progress. Edith Leet brought
by some books and Toni is reading them to Daniel. (It would be nice if she
would read to me when she gets back. I would hate to have her waste her
talents.)
Daniel's roommate left today so they have the room to themselves. Toni is
very pleased to have some privacy. It seems that some folks forget that they
are sharing a room. Anyway, it should matter too much because Daniel is
scheduled to be released tomorrow. His return on November 26th is still on.
Thanks to all for you generosity and kindness, Jim
Wednesday, Nov. 20th, 2002
Hey everybody, today must be a good day because I can't find Toni and Daniel.
I hope that means they snuck off to the new Harry Potter movie since they
were released from the hospital in the early afternoon.
I spoke to Toni and Daniel this morning about getting oxygen for the flight
home to LA. She reported that they got a good nights sleep for a change and
were ready to go. When I called back with the information, they were gone!
Anyway, Daniel said he was feeling fine and glad to be getting out of the
hospital. (Daniel sounded more upbeat than he has for a couple of weeks.)
Toni and Daniel went to the medical flight room and thanked the pilot and
nurses for taking good care of him. None of those present were involved with
Daniel's flight, but they accepted thanks as proxies for all of the men and
women who work on the emergency transport end of accidents. Daniel was
surprised at how small the helicopter was and that it would take 30 minutes
to get from Albany to the crash site. I believe the responding helicopter
was from Westchester County but I don't know if that is any closer that
Albany.
Maybe Toni will call later or even do her own update. In the meantime time I
am going to operate on the "fat, dumb and happy" theory and assume all is
well. --Jim
Thursday, November 21st, 2002
Hello everyone. I know it's been awhile but Daniel's last unscheduled
hospital stay was unexpected and way longer than we imagined. The saga began
with a 12 hour visit to the emergency room last Friday. Luckily we had our
own room instead of a curtained area, which was a plus. Not only did we make
it through a shift change, Daniel also was examined by the doctor looking for
"Marilyn" , who ended up in the wrong room but didn't figure it out until
after he left. He sent a nurse back in to let us know...(I think he might
have been embarrassed).
Daniel was admitted to Pediatrics about 11:00 p.m. and promptly fell asleep.
His roommate was a 14 year-old boy named Tony (his second Tony roommate) who
had been slammed to the ground just before a wrestling match and been
injured. The rooms in Pediatrics are nice but small, each patient area
separated by a curtain. In other words...nothing is private. Daniel and I
tend to get pretty quiet, write notes, and such. We seem to be in the
minority.
Every bed is provided with a chair that folds into a bed (think ironing board
with arms). I spent the nights with Daniel because a) I could, and he wanted
me to b) since so much of his prior care was handled on adult units I wanted
to make certain they understood his history. One night about 1 a.m. the mom
in the next cubicle was snoring loud enough to put Jim to shame, the child
next door was screaming for about 20 minutes (heartbreaking), the nurses
outside the door were having what sounded like a class reunion, Daniel awoke
to pee in his urinal (all things are saved, recorded, and documented), and I
got a case of the giggles. The myth of the restful, peaceful, healing
hospital just struck me as hysterically funny...and the fact that this had
become our life was just so bizarre.
Daniel had echocardiograms, spiral CT scans, EKG's, blood work, nebulizer
treatments, nasal canulas for oxygen, teams of doctors listening, listening
and listening some more. Most everything came out negative. There is a
little fluid around his heart but they believe it is a normal part of the
after effects of his surgery and will go away. His last fever was on Sunday
evening and the Tylenol with codeine helped reduce his coughing spasms from
30/40 minutes without stopping to normal coughing. Up until then the coughing
would trigger vomiting and severe shortness of breath...not a good
combination.
For the CT scan they had to put in an IV line. Daniel has been poked and
probed so much it is very difficult to do. After two tries the nurse got one
in, only to be told by the CT group that they wanted a larger needle.
Although she went to bat for Daniel and tried to explain the problem with his
veins, the CT folks wouldn't yield. She tried three more times and called in
a specialist, who was able to find a vein. Finally, off Daniel rolled for
the test. When he returned he was grinning...he had thrown up on the scanner
on his last pass through. Payback time!
We found a toy room with computers on our last couple of days stay and Daniel
taught me how to play some Mario games. Or, to be more precise, he tried to
teach me. I would drive the first two laps, be in last place, and then hand
it to Daniel in frustration. He would take over and easily finish in first
place. (They are much trickier to maneuver than they seem).
During Daniel's stay we had visitors from SICU, Daniel's old roommate from
Sunnyview, Nathan, and his mom, Linda, Edith Leet, and Dr. Perez-Tamayo. We
discussed movies with Dr. Tamayo and he and Daniel have similar taste...what
a wonderful doctor he is. There were also several nurses, respiratory
therapists, etc. who had been there the night Daniel was first admitted in
May. They were surprised but pleased to see how far he had come. It was
also interesting to ask them questions about what they remembered.
On Saturday night we were on the bridge between the parking lot and the
hospital watching the snow fall (amazingly beautiful) when Dr. Socaris came
by on her way home. We can't say enough good things about Dr.
Socaris...besides being a great doctor she has an incredible sense of humor
(one of our favorite qualities). She stopped to visit and told us about a
boy in Daniel's old SICU room whose mother was reading him Harry Potter also.
She encouraged us to go by and speak with them so we did. It was just like
old home week. Lots of great nurses coming to say "Hi" to Daniel, while I
got the chance to talk with the boys parents.
As always the Albany Med staff was terrific to us. The nurses, PCAs, and
support people were all so nice and we enjoyed laughing and joking with them.
One of the PSAs referred to Daniel as "California" and said she thought we
should take her with us, since she really missed sunshine. The last day was
filled with visits to the helicopter crew, a tour of the helicopter, photo
opportunities and then we were off. After returning to Fisher House, Daniel
took a short nap while I rounded up his "new" meds from the local
pharmacy.
Originally we had been scheduled to see Harry Potter on Friday with the
Leets, so we decided we needed to catch up on social activities. Agreeing to
meet Edith Leet at the movie, Daniel and I caught a quick dinner. Not only
did Daniel finish his Sub sandwich, he ate about half of my lemon chicken, a
little popcorn at the movie, and wanted to go for dessert afterwards. I
think his appetite has returned! We really enjoyed the movie (although I did
have spider dreams last night) and Edith said it was even better the second
time. I'm sure we'll catch it again...but next time we should be in
CALIFORNIA!
Today we slept in, I started packing (yes), and we shared an early
Thanksgiving dinner with everyone at Fisher House (compliments of Jerry and
his staff). This has been such a wonderful place to stay. I can't imagine
how I could have survived without having such a warm home away from home.
Jerry, Charlie, Dorothy, Marilyn, and Melody have been so very good to me,
Daniel and everyone who has come to stay. I have met some great families and
we have shared each other's sorrows and victories. I continue to be amazed
at how we have been embraced in Albany.
Daniel is napping at the moment. He had a great update going but the
computer crashed, so I imagine he will want to add his own perspective.
Tomorrow we travel to Bard so Daniel can say goodbye to his friends and
professors there and pick up a few last belongings to transport home. It's
still hard to believe we will really be back in Arcadia by this time next
week.
(DF) My mom pretty much sumed it all up as well, even better, than I had
done. Can't wait to see you all very very soon. Heart, Daniel (and Toni
too!)