John and Lucinda Progress - Archive
Lucinda outside John's room at Beth Israel North Hospital
Dear Friends and Family of John & Lucinda,
Here is an archive of their progress in January with the most recent updates posted first.
1-31-03 Update from Lucinda
Dear Friends and Family,
All reports from Mr. Tull's docs and nurses continue to be very positive. I
will be so glad to get him into rehab so that I have a bit of a break!! We
have our routines which include "get me a greenie" (that would be the
plastic stick with a green sponge on the end which marinates in water), "get
me a yellowie" (that would be the lemon glycerin swabs), "how about some lip
goo" (and that is the hospital's version of chap-stick). He watches golf on
the tube with no sound when absolutely no one is around and he is quick to
scold any of us who promise to come to the hospital at a certain time and
fail to show up at that exact time. I have kidded him for 10 years about
being bossy and I am not about to stop now.
He amazes us all and we love all of you.
Lucinda
1-30-03 Update from Lucinda
Dear Friends and Family,
We had a great day today. We've had some very nice visitors (more expected
in the next few days), productive physical therapy, positive reports from
all medical personnel and......the highlight of the day........a video which
was produced by and starred a few friends in Santa Fe. Tull and I laughed
and cried together as we watched our doggies, our house, Santa Fe scenery
and a bunch of wacky friends at our Friday night hang-out wearing "Free John
Tull" buttons. I know that this sounds really nuts, but sometimes I think
that we are happier (or perhaps more at peace?) than we have ever been.
Love to all,
Lucinda
1-29-03 Update from Lucinda
Dear Friends and Family,
Today was a big day for the big boy. Everyone is moving toward rehab, yet
all of Beth Israel North is so attached that they hate to see us go!! A
chaplin from Beth Israel came to visit late today after Tull had been
tortured by PT, a surgeon and the ENT doc who put the trach in (however
many weeks ago) and tonight said that if it were up to him that it would
come out. The chaplin commented to JHT about how weird it must be to see
the world when we all have to be behind masks, gloves and gowns when we (the
world) visit him. His response was "it's better than not seeing the world".
Love,
Lucinda
1-28-03 Update from Lucinda
Dear Friends and Family,
If you were here you could put your head on JHT's chest and he would move
his left arm to stroke your head. (I'm not promising he would do that with
each and every one of you, but he damn well might). He laughs, he cries, he
sings old camp songs and he tells lies. I don't know how it would be
possible to be more in love with someone.
They took out the "main line" today and will likely pull the trach very
soon. The docs and nurses continue to warm my heart with their stories of
when we first came to the hospital, how they consider us to be "family" and
how they are amazed at the miracle of JHT's recovery.
We love you all.
Lucinda
1-27-03 Update from Liza Tull
Dear Friends and Family;
Another great day for my dad! He continues to gain more strength everyday.
He executed all his arm and leg exercises with flying colors. He stayed in
the "chair" for almost an hour. The physical therapist was very impressed.
Sufficed to say he was exhausted as we said good night, but I laughed as my
dad called me his favorite "registered nerd."
The best part of the day was when all the doctors that were there that
first week gathered to do the afternoon rotations. As they stopped outside
his room, my dad just looked at them and slowly lifted his arm to do this
great "Queen Mother" wave and they waved back. What a great picture. They
knew it and we knew it--my dad is a miracle.
Love,
Liza Tull
1-25-03 Update from Liza Tull
As a guest columnist for today's update, I get to proudly report that my
dear father had a wonderful day. With a stream of visitors and a successful
time in the "chair, " I think he could have stayed up all night and talked.
It was so incredible to see the progress that my dad has made. His attitude
is upbeat, his mind is sharp and his sense of humor is better than ever. My
dad is back!
I, however, did a horrible job as a makeshift nurse, not having been
there a full hour before accidentally resting my foot on his bed lever that
controls his mattress inflation. As the nurses scrambled to call the bed
manufacturers, I scrambled to correct the situation (only making it worse,
of course). To make me feel better, though, he affectionately referred to
the whole experience as an "adventure."
Tonight I'm thankful to God for the future "adventures" we all get to
experience with my dad.
Love,
Liza Tull
1-24-03 Update from Lucinda
Dear Friends and Family,
Today was a great day for the Tull/Marker group at Beth Israel North. JHT
sat up again, got a good PT workout, lifted his left arm by himself and
spent a great part of the day talking with one of his best buds from U.T.
days. He cracked quite a few good (and some pretty bad) jokes and shed a
few tears. He came to the conclusion today that the lemon glycerin swabs he
has developed a taste for are better consumed in twos (one is not enough and
three are too many) and he simply continues to amaze me.
Warm wishes to you all on this night which is quite cold for those of us in
the east.
Love,
Lucinda
1-23-03 Update from Lucinda
Dear Friends and Family,
Our doc says that we will very possibly check out within a week or so. The
ventilator was being removed from Tull's room as I arrived this morning.
His trach was capped for a few hours and he was breathing through his mouth
and nose totally on his own for the first time in nearly 3 months. We are
both very exited by this progress, but the heat is certainly on to find the
right rehab and to make all arrangements. It seems that we have all been
waiting so long for this moment which is now here and is demanding full
attention.
I have been not able to return all phone calls or messages as promptly or as
courteously as I would like. Please know that I appreciate all calls,
letters and e-mails. Thank you all again for your support, love, prayers and
general good vibes.
Love,
Lucinda
1-22-03 Update from Lucinda
Dear Friends and Family;
The major event today was that JHT sat up in what is called a "cardiology
chair" for 45 minutes. During that time he was also put through a pretty
good work out with PT. I thought he might take a nap after so much
activity, but he was wide awake all day and still ready to move forward. I
was very lucky to have several good friends here today and was able to take
a short break while Sally Wood stayed in his room and was a good "nurser"
for him.
Thanks again everyone. I am grateful for all the help and support you are
giving.
Love,
Lucinda
1-21-03 Update from Lucinda
Dear Friends and Family:
A big step today was when I was able to extend John's arms so that he was
able to touch his face. He was so thankful to be able to feel his mouth,
nose and stubble on his chin (they shaved his beard after he was put out).
He had an infection today that was probably caused by the main line which
was changed yesterday. The physical therapy folks gave him a good work out
today and he was sound asleep the rest of the day.
Love,
Lucinda
1-20-03 Update from Lucinda
Dear Friends and Family,
My days at the hospital grow longer as Tull needs more physical therapy and
conversation. He had a fever this morning for the first time in more than 2
weeks. The possible cause includes the vaccinations he received yesterday,
infection in the main line (which was changed today) or a minor cold. At
any rate, he was fine this evening.
I would love to tell you all some of the incredible things he has said in
the last few days, but I feel we should wait until he is able to
participate. Please know that we are both doing well and love the support
you have given. JHT is really very close to moving on to rehab. He is
quite an amazing fighter.
Love,
Lucinda
1-19-03 Update from Lucinda
Dear Friends and Family,
John Tull is ready to "bust out of this place". He gained much strength
today and slept quite a bit during breaks in our physical therapy and
massage sessions. He told me tonight that he is very lucky to have me to do
these things for him. I told him that I was very lucky to have him. He
then said that it is a miracle that I have him.
Truth be told, that was not just his ego talking. He now fully understands
how close he was to not making it.
Love you all,
Lucinda
1-18-03 Update from Lucinda
Dear Friends and Family,
I think that John Tull and I are building strength together as the days
pass. It is gratifying for us both when he can hold his left arm up just a
little bit longer. Certainly it is a work out for me when we do some of his
physical therapy exercises and so I build a bit more muscle as well.
We agreed a number of years ago that making each other laugh is key to
sustaining a long relationship. He has made me laugh every day in the last
two weeks or so and I know that I have at least made him smile by being his
tough-love wife. "You will take your 10 deep breaths each hour and you will
move your arms and legs!"
Love to all,
Lucinda
1-17-03 Update from Lucinda
Dear Friends and Family,
I spent several hours today reading messages from this site to JHT. He was
deeply moved (as was I....got pretty choked up a couple of times) and said
that hearing the messages will actually help him to accept staying in the
hospital a few more days. We are both especially touched that this tragic
event has brought together so many people from our pasts.
The big guy is slowly building a bit of strength and is very proud of his
achievements thus far. We will continue down the road to recovery with this
tremendous support.
Love,
Lucinda
1-16-03 from Janie, John's sister
Being here today with my big brother Johnny has been wonderous. I am hoarse from talking so much with him. I read to him the most recent 75 messages posted on this website. He is so very moved to be hearing from old and new friends and even total strangers who have some connection through someone else who love him and Lucinda. Keep them coming. Thank you for all the prayers and love. It makes all the difference.
Love,
Janie
1-15-03 Update from Lucinda
Dear Friends and Family,
I think that Mr. Tull wore himself out a bit yesterday. He talked
relentlessly from 9:00 a.m. until 10:00 p.m. and has been breathing on his
own for about 36 hours. So today he was tired and not as interested in
talking. However, he is still very anxious to move on with his life. He is
building his physical strength and today held his left arm up by himself for
a few moments. I wish I could put him on a plane and bring him home
tomorrow (which is what he wants), but we are not quite ready.
Thank you all once again.
Love,
Lucinda
1-14-03 Update from Lucinda
Dear Friends and Family,
The progress is so intense that I am absolutely exhausted by this man who
just woke up from approximately a 9 week nap (it was 10 weeks ago today that
we were admitted to Beth Israel). Very soon he will be dictating the
updates. The challenges he faces now are simply related to his physical
condition which resulted from all that time in the same position in an ICU
hospital bed. He will need to learn to swallow and will have to work at
building his strength so that he can move around. His general outlook is
amazing. He is grateful to have his life and is looking to the future.
I asked him what message he would like to pass on this evening. He wants
everyone to know that he is joyous for the miraculous recovery of his
kidneys. He also said that he loves each and every one of you who have sent
a message to this website.
Love,
Lucinda
1-13-03 Update from Lucinda
Dear World,
Another great day in the lives of John and Lucinda. He is still without
fever, more alert, increasingly conversational and incredibly motivated to
walk, hike and cross-country ski. We got a great report from the vascular
surgeon regarding the healing from the last surgery and the physical therapy
team is very impressed with his progress. He is spending his first night
totally off the ventilator (if all goes well). A few memorable quotes from
today: "I hate being suctioned, but you got to do it", "it's boring in this
room", "that's the IV bag from hell".
I read him a few cards, letters and visits from this site. I asked him if
he knew how loved he seems to have been for a long time.....he said that he
did know and that the reason he is loved is because he loves so many people.
There you have it.
Love,
Lucinda
1-12-03 Update from Lucinda
Dear Friends and Family,
Today was the best day yet! (I know I've said that before). We talked all
day long and Tull is now very anxious to get into a rehab facility. We
probably have a very good chance of getting out of ICU in the next few days.
I would love to get him a room with a river view for a few days and then
move on to rehab. Any information any of you may have regarding rehab
facilities would be greatly appreciated. Also, I am going to start reading
the postings so let me know if you have any specific messages you want to
send.
Love,
Lucinda
1-11-03 Update from Lucinda
Dearest Friends and Family,
Today was just wonderful. The Tullster was most conversational (using the
trachea tube that allows him to vocalize). He is amazingly lucent with an
occasional "cobweb in the brain" slip up. I know that we will have many
chuckles together at some point about a few of his remarks.
He is determined to move very quickly with his physical therapy and general
rehab. In fact, he started barking orders at me about researching rehab
facilities ASAP. I commented on how quickly he started bossing me around
once he got his voice back. That's our boy!
Love
Lucinda
1-10-03 Update from Lucinda
Dear Friends and Family,
Today was a good day. Tull is recovering well from his surgery. Trey, Katy
and I were all with him at various times of the day and he asked each of us
for a "big hug" at different times. We will give him hugs from all of you
as well. His physical therapists plan to visit him every day from now on
and all the docs hope to get him moving as soon as possible. He has
expressed a strong desire to leave the hospital, so we all hope to move on
down the road.
Love to all,
Lucinda
1-9-03 Update from Lucinda
Dear Friends and Family,
John Tull came through a four hour revision surgery with flying colors. The
surgical technique that was used should result in the optimal physical
condition for John to resume an active life. This should be the last major
procedure and we can now truly begin the process of healing.
Please keep sending the positive energy!
Love,
Lucinda
1-8-03 Update from Lucinda
Dear Friends and Family,
We did have a bit of an emotional roller coaster today. However, Mr. Tull
is still absolutely amazing. He is strong enough to have his second surgery
tomorrow. His legs will have a bit of revision and he will then be totally
on the road to recovery.
Many of you comment on our strength. I had a bit of a hard time today (and
so did he), but I will say again that it is all of you who have given us our
strength. I thank you again.
Love,
Lucinda
1-7-03 Update from Lucinda
Dear Friends and Family,
What a day!! Tull was wide awake from early this morning when his sister
Janie and I arrived at the hospital. He asked questions immediately and we
were able to read his lips most of the time. The doctors were able to
change his trache tube today to one which should enable him to speak
sometime tomorrow. Today was yet another day with no fever and he was able
to further breath on his own.
I told him the entire story of our illness and though he seemed shocked and
was certainly not ready for a celebration, he handled everything remarkably
well. We probably must all be prepared for many ups and downs in the near
and distant future, but those of us at the hospital were deeply moved by the
intelligence, dignity and gratitude expressed by John Tull today. We also
told him more about this web-site and he said that he would like for us to
read the messages to him.
Thank you. We love you.
Lucinda
1-6-03 Update from Lucinda
Dear Friends and Family,
Mr. Tull was tired today again. He is breathing so much on his own that he
becomes exhausted as the day goes on. We had yet another day without fever
and everything else looked good. A man who is a word class lip reader came
to the hospital this evening to see us and so I tried desperately to awaken
Tull so that this gentleman could tell me what he is trying to say. I shook
John and patted him rather roughly around the face (as I have seen the
nurses do) and yelled for him to wake up. His eyes opened wide and the
first words that were read were "calm down"!
So it goes in the ICU.
Love,
Lucinda
1-5-03 Update from Lucinda
Dear Friends and Family,
John slept quite a bit today. He is probably tired from breathing much
more on his own. The doctors are very impressed with how quickly he is
adjusting to less support from the ventilator. Also, no fever again today!
He did wake up enough to tell me that he was tired and he looked just like
John Tull taking a nap at home in Santa Fe (I think he would have been
snoring if he could).
Love,
Lucinda
1-4-03 Update from Lucinda
Dear Friends and Family,
Today was another great day and also marked a 24 hour period of no fever.
The big frustration for all is not being able to understand most of what JHT
is trying to say, but we will work on a couple of ideas on Monday to handle
that problem a bit more effectively. I was in his room today when he was
examined by a critical care neurologist and later when our primary doc came
to see him. Both were amazed by his progress and he seemed to understand
everything they said.
He still wants absolutely no television and so I will try to get some music
in his room tomorrow. He also responded quite warmly to the many names I
mentioned today and also to "search and rescue". You have all been a part
of this miraculous recovery.
Love,
Lucinda
Update from Lucinda for 1-3-03
Dear Friends and Family:
Today was the most exciting day to date!! JHT was completely responsive from
the moment I entered his room. The John Tull we know was basically back,
but without the ability to speak. The nurses and I were able to read his
lips a number of times and he responded to questions by nodding his head,
saying yes or no and also doing a few John Tull facial expressions.
We were all thrilled beyond belief!
Here are some of the things that I
learned today:
- John Tull really wants to drink some water (he cannot yet, but we put some
swabs in his mouth which provided some moisture and he thought they were
acceptable);
- He does not want the television on under any circumstances;
- He loves me;
- He knows that he has been pretty sick, but is getting much better;
- No pain; and
- He seems to understand that there is a web-site and that he is greatly
loved.
Today has been a wonderful day. Thank you. We love you.
Lucinda
Update 01/02/03 from Lucinda
Dear Friends and Family,
We continue to see little improvements in John every day. One of his docs
suggested that the movement I saw this afternoon in his left shoulder, arm
and leg is a sign that his connections are in the process of re-wiring. His
kidneys are almost completely normal at this point and his breathing
improves each day, though he is still on the ventilator.
There were moments today when he seemed to mouth words and move his head in
an almost agitated manner and seemed to not want to respond to questions.
But as I was leaving for the evening and told him quietly that he has been
very sick, but is very strong and brave and would be fine, that we would be
going home to Santa Fe and that he was greatly loved by more people than he
could imagine, he looked into my eyes and nodded his head in agreement to
each statement. He was calm and seemed to really understand. That was very
comforting for us both.
Love,
Lucinda
Tonight's update is from Lucinda 01-01-03
Dear Friends and Family,
Today John Tull got rid of the feeding tube which had been in his mouth and
down his throat (and I believe really irritating him). He now has a "peg"
which is a tube that goes directly into his stomach. He continues to be
weaned off the respirator and looks more like himself every day. The major
frustration right now is that he keeps talking and none of us can read his
lips. I know that he has much to tell us all.
Happy first day of 2003. And don't forget that tomorrow is 01/02/03.
Love to all,
Lucinda
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