Sunday, October 27th, 2002
We missed yesterday's update because we spent the night at the emergency room
at Albany Med. About 10:30, after Daniel was asleep, he woke suddenly with
what at first appeared to be a nightmare. He sat up straight in bed and then
lay back down and started shaking. However, it quickly became apparent that
he was having a seizure. I called for Jim and he, in turn, called 911.
Daniel was taken by ambulance to Albany Med where they did a CT scan, blood
work and monitored him until about 5:00 a.m. Although he seemed to "come
around" before the paramedics arrived and talked with them in the bedroom, he
has no memory of anything until he was being placed in the ambulance outside
of Fisher House. Neurology put him on some anti-seizure medication and we
will be following up with his neurosurgeon and an EEG. As far as we know
this will not affect the timing of his Wednesday surgery, but we will keep
you posted. Needless to say it was very frightening for all of us. (We did
make the connection that the seizure occurred about the time the Angels were
down 5-0...just a little added pressure for tonight's game).
We also discovered that although Pediatrics seemed noisy, it can't hold a
candle to the Emergency Room on a Saturday night. However, by the time we
departed it was getting very quiet...we even watched Pyramid and an episode
of Friends on the TV by Daniel's cubicle. Jim dropped Daniel and me off at
Fisher House while he went wandering the streets looking for an all-night
pharmacy, so we could get Daniel's prescription filled. The discharge nurse
was certain there was one close by (but she was mistaken).
All of us slept in until noon, and since have had a quiet day. We have
decided to keep a very low profile until Daniel's next surgery. Meals, short
walks around the sidewalks at Fisher House, and taking turns on Daniel's
breathing machine to see who has the best lung capacity will be our main
activities.
Immediately after lunch today at Fisher House, Daniel suggested we go for a
walk to the VA hospital to visit Burger King. (If appetite is a signal for
health he seems to be recovering nicely from last night's episode.) We have
also entertained ourselves with a rousing game or ten of Scrabble. We play
the version where we all take 14 tiles at the same time and form words
simultaneously. The first person to use all the letters says, "draw" and we
each get five more tiles. This same pattern continues until all tiles have
been drawn. The more we played the more the words deteriorated (taze,
infantize)...each with their own invented definition and justification,of
course. (Daniel and Jim find themselves quite amusing.) It was like playing
with the Three Stooges.
At the moment we are finishing up laundry, Daniel is napping, and we are
waiting for the final Series game to begin. Each day brings us one day closer
to home and that is encouraging. Take care, we send our love to everyone.
Toni, Jim and Daniel
Monday evening (posted Tuesday morning), October 29, 2002
This will be brief because it is so late here...the computer at Fisher House
has become a hot property and sometimes it is hard to get on. However, I
don't give up easily.
rToday was another slow day. We watched the entire last game of the Series
last night and it certainly was worth it! Very exciting...(I just felt bad
for the little boy in Dusty Baker's arms). Since the game ended late here we
slept in again this morning. Actually, Jim and Daniel slept in and I got up
to begin sorting and boxing a bunch of the stuff we have collected over the
past months, so we can mail it home.
Daniel and Jim wandered in about 10:00 a.m. and after showering they took off
for the VA hospital for breakfast at Burger King. Daniel walked both ways
using his walker and returned ready to rest. They both reported it was brisk
outside and we have SNOW predicted for Wednesday, Friday, Saturday and
Sunday. The high temperatures have been around the high 40's the past few
days so we are getting a taste of a real fall. Personally I like the colder
weather (as my counselor friends at AHS will attest during our thermostat
"wars"). I may change my mind, however, if the snow sticks to the ground and
I have to drive on icy roads...
While Daniel took a quick nap this afternoon, Jim was off to the nearby
shipping place to mail the boxes I sorted in the morning. After he was gone
the woman from Medicaid called (we were denied, we can appeal, we can get an
advocate, we can get a lawyer, we can appeal the appeal etc...). I turned
everything over to Jim when he returned. Jim has way more patience for this
sort of thing than I do...I am not good at wading through the red tape of
organizations (no surprise to those of you who know me).
I also spoke with the doctors at Albany Med about Daniel's seizure. For now
we are going ahead with the pre-admission testing tomorrow morning and in the
afternoon we are seeing a neurologist for the final opinion. I think it will
go ahead as planned...that seems to be what they are indicating but nothing
completely definite yet. Even if it is a go we won't know the time until
tomorrow afternoon. I find I am reaching the knot in the stomach stage
again, which probably won't abate until a couple of days following the
surgery.
Emily arrives tomorrow and she will be a great comfort to all of us. Her
plane comes in after 11:00 p.m. so she will be able to be with Daniel
Wednesday morning until the surgery begins. She will be able to stay until
Sunday and hopefully Daniel will be well on his way to recovery by then. I
know it will do him world's of good to spend time with her.
Thank you so for your prayers and kind words for Daniel's last surgery. He
hasn't needed pain pills since yesterday and I can only imagine how he must
feel knowing the process will begin again in just two days. It is hard to
watch him face so much, with such a brave face and not be able to wave a
magic wand and make everything better. We hold our breath, we pray and we
thank all of you for your support during this journey...Love, Toni
Tuesday morning, October 29th, 2002
Well, we finally got the go ahead and Daniel's surgery will begin
(theoretically) tomorrow at 7:30 a.m. We have to check in at 6:30 a.m. They
couldn't give us an exact length of time but said he should be out of surgery
sometime in the afternoon. He will go straight to the cardio pulmonary
surgical unit. After this surgery he will be on a respirator to support his
breathing and oxygenate the blood for the first day or so. He will also have
an oral-gastric tube that passes through his mouth, down his esophagus and
into his stomach to drain fluid and air from the stomach. In addition, there
will be several intravenous tubes to give medication and nourishment until
his intestines start working. After a couple of days they expect him to go
to the Cardiothoracic floor. They estimate discharge will be six or seven
days following surgery with more care needed back at Fisher House. Since he
has to wear the Teds stockings for at least two weeks after he returns to
Fisher House, I am assuming the recovery will take a couple of weeks or more.
Lots to take in...
We spent most of the day at Albany Med. We began in the morning with his
pre-admission testing which included bloodwork (three tubes), x-rays, weight
(he has gained a pound), general physical and a detailed history. We saw
several nurses, physician's assistants, anesthesiologists, accounts personnel
etc. When we walked in they said, "Hi Daniel" before we even checked in.
One of the women checking Daniel in teased him that he should be on the
payroll he has been in so much. The other woman, Rose, remembered him for
his buffalo hat.
The highlight of the morning for Daniel was getting a voucher so he could eat
for free in the hospital cafeteria. It doesn't take much. After our first
Albany Med outing we returned to Fisher House so Daniel could take a quick
nap before we ventured back for our afternoon appointments. We met with a
neurologist, Dr. Bernadini, about Daniel's seizure. Dr. Bernadini took down
all of the recent events and did simple tests, all of which Daniel passed. I
think we can all independently give Daniel's medical history without any
significant variances. Dr. Bernadini wanted more blood work to check the
levels of the anti-seizure medicine in his blood. Of course, all the labs
were closing for the day but the pre-admissions staff stayed late to get the
blood work done. The people at Albany Med are super.
After finally getting the medical portion of our day out of the way, we
headed to Barnes & Noble to get Daniel a book for the postoperative period.
After that we stopped at TGI Friday's to pick up dinner and back to the
Fisher House. We missed Ian and Edith Leet who left all kinds of Halloween
goodies, including apple cider, apple cider donuts, lots of plastic spiders
and a pumpkin.
Daniel is getting ready for bed and soon Jim and I will follow...although we
have promised to wake Daniel when Emily tiptoes in late tonight. We all
agree that we are more nervous about this surgery than the last and will be
grateful when it is completed.
Our evening is ending with phone calls to family. We will be praying for a
continuation of the miracle that has kept Daniel with us. Please include
Daniel in your prayers and thoughts tonight and tomorrow. We appreciate all
of you who have been on this journey with us. Love, Daniel, Toni, Jim,
Emily & Betsy
Wednesday, October 30th, 10:20 posting
Daniel's operation went well, thank God. We arrived at Albany Med at 6:30 am
for the final NY surgery. All the preliminaries went smoothly and they took
Daniel off to surgery just after 7:00 and we took our place in the waiting
area. It wasn't any easier or faster this time. After about two hours,
there was an emergency anouncement over the public address system for a
thorasic surgeon in the CPS. Since we didn't know what or where the CPS is
we experienced a moment of panic. It took about 30 minutes to determine that
it wasn't Daniel. Around 12:30 pm Dr. Perez Tamayo came out and let us know
that the operation went well and Daniel was doing fine. Dr Perez Tamayo took
the time to give us all the details and assure us that Daniel would be fine.
Daniel was sent to the Pediatric Intensive Care Unit (PICU) again. We were
told that there was a turf battle for Daniel. I think that really means that
the PICU census is down
Anyway, Daniel is in PICU and is in a great deal of pain. He says it is much
worse than last weeks surgery. The nurses are loading him with pain killers
but the relief is short-lived. Toni is spending the night so she can be his
advocate in keeping the pain down.
One of the positives from the operation is how well his lungs have responded.
Dr. Perez Tamayo said his lungs show the trauma of the accident and the
subsequent ARDS. Despite this, his lungs did well and the breathing tube was
removed ahead of schedule.
We are thankful for the high level of professionalism the doctors and nurses
show at Albany Med. We are also thankful for the prayers and kindness of our
friends. Thanks to all. Jim
Halloween! 2002, posted from Toni...11:10am
Dr. Brian Fallon, who has known Daniel since his very first night in SICU
(and happens to be dating one of our all time favorite nurses), arranged to
be there for Daniel's aorta surgery. He came to find us afterwards, in the
cafeteria, to tell us how well it had gone and that Daniel had already been
transported to PICU. His level of caring brought tears to my eyes...the
Albany Med staff is so special.
While we waited to see Daniel Annmarie from SICU was asked to help orient the
PICU staff on Daniel's "swan" catheter. She found us in the pediatric
waiting room to tell us how good he looked before she went back
downstairs...(she also brought by some rolls for us while Daniel was in
surgery). Soon after Annmarie left, Dr. Socaris stepped off the elevator and
we all exchanged hugs. She checked in on Daniel and reported that he was
trying to communicate and had made it known he was ready to have the
breathing tube removed. She helped speed the process for us to get in to see
him.
As we entered Daniel's room he was wide awake and tried to talk to us by
"signing," since he couldn't talk with the breathing tube in. Unfortunately
we don't sign (and neither does Daniel, but that didn't seem to phase him)!
We settled on the listing letters of the alphabet and squeezing the hand
method which worked relatively well. (Daniel was a little frustrated that we
seemed to be a bit slow and confused.) At one point Daniel put up his
fingers, 1, 2, 3 and then spread both hands palms up. We thought he was
trying to convey his level of pain (they use a 1 to 10 scale). The roll of
his eyes let us know we were not even close. It turns out he wanted Jim to
sing, "1,2,3 what are we fighting for, da da (I can't remember the words) I
don't give a damn, next stop is Vietnam..." How I guessed it or what
prompted the request we may never know. However, Jim obliged and Daniel was
a happy camper.
I stayed a couple of hours and then returned to Fisher House for a nap in
preparation for overnight at PICU. Apparently I missed a lot of the really
bad pain as they tried to adjust his medications. However, when I arrived
about 8:30 p.m. they had already removed the breathing tube, put him on an
oxygen mask and were just setting Daniel up with a unit where he could
dispense an extra dose of morphine every 15 minutes as needed. Let me tell
you, we didn't miss one all night! I also ran through my repertoire of songs
(Betty Coed was one of Daniel's requests) and Diana Krall played nonstop
throughout the night. Luckily the combination of morphine, music and time
took his pain from a 7 to a 5, which Daniel felt was manageable.
He also used his breathing apparatus (inhale and the ball moves up the tube)
about ten times per hour. Daniel is determined to get up and around as soon
as possible.
They have given him a heart-shaped pillow that we hold firmly over his heart
whenever he coughs. This is something he must do to help clear the lungs and
increase their functioning. With the exception of sleeping in 15 minute
segments it was a peaceful night.
This morning Daniel had three things removed...stitches in his head, the
"swan" catheter, and the A-line. These are all very good things. Dr.
Kuehler was doing rounds in PICU and stopped by to say "hello" soon after Jim
arrived. The rest of the morning was spent visiting and reading Wind in the
Willows before we took a quick break so Daniel could get a sponge bath. The
nurses in PICU have been terrific to him and since today is Halloween the
costumes have been great. Daniel had Jim bring over Edmund (the buffalo hat)
so he could do his part to celebrate. Daniel calls out to the nurses as they
go by, "Great costume, you look cool," and most stop by to see where the
voice is coming from. Another sign he is getting better...
Emily has gone to take my place with Jim and will certainly entertain Daniel
with her camp stories and songs. It is great fun to see the two of them
playing off each other. For now I am off for a nap since I am due for
another night at PICU. Take care all, I'm sure Jim will fill you in on the
rest of the day later...Love to everyone and so many heartfelt thanks for
your encouragement, prayers, and support, Toni
Jim's Halloween update posted 9:10 pm
Toni asked me to update the remainder of our Halloween so here goes. Daniel
is on a morphine drip that allows him to get an extra dose every 15 minutes.
He was very faithful at hitting the button every 15 minutes into late
afternoon. As the morphine levels increased, Daniel began to have
hallucinations. The hallucinations weren't frightening or anything, in fact
they were quite amusing. They also seemed to improve the overall Halloween
experience. Daniel also stopped making sense by late afternoon. He can be
quite funny, but the third or fourth time on a story or question makes you
remember why two-year olds are so tough.
The pain management doctors came by to discuss alternatives. Daniel is doing
much better with pain than the average patient so we are staying with the
morphine. He is already weaning himself and should be done with the morphine
after tomorrow and on to non-narcotic pain killers.
Daniel did add David Bowie and Tahiti something to his play list this
afternoon. I think the Diana Krall cd must be about worn out by now.
Hopefully, tomorrow will add something to the mix that I will enjoy.
Daniel is set to be transferred to the cardiac unit as soon as a bed is
available. Since nothing opened up today, we'll be in PICU for another
night. The nurses in PICU have been very good to Daniel and we appreciate
it. Hopefully, tomorrow will bring more progress. Jim
Friday, November 1st, 2002
Forgot to mention that as Daniel was wheeled into surgery he was singing a
David Bowie song. Dr. Perez-Tamayo sang a verse with him before they put him
to sleep...I can only imagine!
Last night Daniel was on a roll. The morphine was working really well and he
spent most of the night wide awake, just chatting away with anyone and
everyone. At 10:30 he wanted me to guess what song he was thinking
about...and REALLY expected me to guess. At 11:30 he decided to chat with
the nurse about all the tubes, bandages, etc...what they were for, why they
were there, how long would they stay, could he take them off if he wanted,
did she know she looked like the PT Tracy at Sunnyview, how old was she, did
she see the person dressed as Elmo when she came by PICU, wasn't she rad, was
she going trick or treating?...(you get the picture). At 12:30 Daniel was
sitting up in bed and wanted me to take him to the bathroom. I reminded him
he was connected to a bunch of tubes and had a catheter in, so he couldn't go
anywhere. He suggested we disconnect him and take the catheter out. (I
suggested we check with the nurse first to see what she thought would be
best.) At 1:30 Daniel was again sitting up in bed trying to take off his
gown so he could scratch his back. The nurse brought him a new gown and he
thanked her and commented on the nice fabric and color (this "new" gown was
identical to the one he had taken off). Then he asked if I would like him to
massage my shoulders because I looked tired (no kidding). He told me I would
have to sit on the bed because they were keeping him there. I asked for a
raincheck. At 2:30 the nurse asked Daniel if he would like to watch a video
(smart woman) and he picked Austin Powers. At that point I asked if he
minded if I returned to Fisher House, since he seemed to be well-entertained
and didn't really need me. He thought that would be a good idea because he
didn't think Austin Powers was really my kind of movie. At that moment a
nurse walked by and he spotted her Halloween hat and called out, "Hey your
hat is really dope!" He was chatting with her as I left.
About 5:30 a.m. the phone rang at Fisher House and it was Daniel. He said,
"Hi Mom, I'm ready to come home now. Do you think we will walk or drive?"
When I left the hospital there was no phone in his room so I asked him where
he was. He replied, "Oh, I'm still at the nice nurse's house." I inquired
if the doctor's had said he could go home. His response, "I don't think so,
but it's okay, the movie's over." I reminded him he wasn't supposed to get
off the bed without asking someone first so he probably wasn't supposed to
come home. At that point he paused and said, "Mom, I think I might be
confused." With that admission I asked if the nice nurse was there and could
I speak with her. Apparently she was right next to him because she is the
one who brought him the phone and let him make the call. She and I discussed
that perhaps he needed to be monitored pretty closely since he seemed pretty
disoriented. She also thought maybe it would be a good idea to cut back on
the pain meds a little, which I thought made a whole lot of sense.
Apparently Daniel's blood pressure was low and had been for a couple of
hours, which she thought might explain part of the confusion. She was going
to check with the resident on duty. (Another good idea.) After the nurse
handed the phone back to Daniel I told him I loved him, to please stay in bed
and try to get a little more rest. He cheerfully bid me good-bye and thanked
me for talking to him. What a night!
Jim did most of the morning duty. He was there when Daniel had the catheter
removed, the lines coming out of his neck removed, and his sponge bath. Jim
was also there when the nurses were discussing Daniel's pain medication and
Daniel related to the nurses how his Dad had been mainlining drugs for
several years. Jim smiled at the nurses and said, "Very funny, bud." Daniel
however, insisted with a straight face that Jim shouldn't lie about his
habit. When Emily and I arrived Daniel was expounding on the new pinpoint
digital cameras that spies can inject into their bodies to take videos. As a
matter of fact, he did it himself about once a month to record movies...so
far he had taped the Harry Potter movie and Crossroads with Britney Spears.
His camera is inserted just below his right eye. (Now, I want you all to
know that if we laugh he gets very offended that we don't believe him...)
Obviously we watched little or no TV today because Daniel provided more than
enough entertainment
Starting about noon we were told Daniel might be moving to the cardiac floor,
then we were told he would be moving to pediatrics, then cardiac, then
pediatrics...at 8:30 p.m. he was transported with Jim and I in tow to the
cardiac unit on the 8th floor. We were apprehensive about how old his
roommate would be, so we were pleasantly surprised when he got a private
room. It is very cheery, roomy and has a private bath.
Edith and Ian Leet came by about five minutes after we got settled with a
homemade apple pie. It was just like a housewarming. They were followed by
a surprise visit from Emily Sweeney and another SICU nurse, (who is very cute
and took good care of Daniel and we are embarrassed because we can't remember
her name tonight). Anyway, what a great treat for Daniel and all of us to
see them. It was like being home again (at Albany Med).
Daniel's new nurse, Tara, took him on a stroll around the unit (part of his
rehab therapy) and it looks great. He said he only needed someone to stay
until he fell asleep, so Jim and I kissed Emily (in a sleeping chair) and
Daniel goodnight just moments ago. The progress in just two days amazes us
all...Daniel may be able to return to Fisher House on Monday. It's hard to
believe. We hope your weekend has been filled with as much to smile and
rejoice about as ours...all our love, Jim, Toni, Emily and Daniel