Home
Week 1
Week 2
Week 3
Week 4
Mom's Story, by
Rommel
|
- Mon, October 25, 1999
8:00pm From Ron, via email: Once more our lives are narrowed to a little 24-48 hour window.
Mom is at a crucial crossroads. Basically, the doctors are concerned that Mom
'cultured' a common, usually benign fungus in her lungs. This is an indication that
her immune system is compromised. This is the greatest long-term concern.
However, the longer she can 'stay the course' the more likely her immune system will
revive. The next days are key.
In the very short term, she is fighting off the infection. This is indicated by the
fact that they have weaned her off some medication which helps her blood pressure and
helps the heart pump. The doctors have scheduled her for an operation tomorrow to
close up her abdominal wall. This is good news again since the doctors believe she
is doing well enough to undergo surgery.
Isn't it ironic that we focussed so much on liver rejection, and now her immune system is
really at issue.
Again on the up side, Mom is very alert. She will nod her head when she understands
something. Unfortunately her gag reflex is back and she really doesn't like the
respirator which is down her throat. Her back hurts. We're trying to make her as
comfortable as possible.
On the non-clinical side, Tito Conrad Faustino and family arrived late last night and paid
a short visit to Mom. My gratitude to them as it perked Mom up. It's only too
bad, I didn't make it a 'Kodak moment' .. I forgot to take their picture. If they
read this and have a family picture, feel free to pass it on.
Finally, since she is so alert, we are focussing on keeping her spirits up. I'm even
saying the rosary with her. Those of you who know me understand what a tremendous
act of selflessness that is.
I try to entertain her with my childhood stories about the Philippines. If you have
any stories about how Mom touched you, send them along and we'll read them to her.
As usual, keep her strongly in your thoughts.
- Sun, October 24, 1999
2:00pm From Ron, via email:
Carmen is more awake than we've seen in
her in the past. She clearly understands who is around her but I don't think she can see
very well. There is eye movement and she can nod to simple replies. Rommel has told her
that she is a product of a miracle and her transplant was successful. She cried to that
news.
I spoke extensively with the Surgery resident and the plan is to postpone the surgery to
close the abdominal muscle until her blood pressure stabilizes. The immuno-supressant
drugs are being backed off slowly as the liver looks like it's now functioning without the
risk of rejection.
Yesterday's problem is still a concern as the infection has not subsided. The good news is
the white blood count has not increased and other indicators seem to be good. She is
still serious, but this battle with the infection is early and it will be played out over
several days.
The doctors are trying to determine the exact nature of the infection so they can treat it
more effectively. The surgical team is discussing the option of taking a lung sample,
entering from her ribs, using a simple bedside procedure to help them make a positive ID
of the infection. Blood and a throat sample were taken and it will be 24 hours before they
have the results.
The short term strategy is to eventually remove the ventilator this week and
reschedule her surgery. Carmen hates that thing down her throat.
- Sat, October 23, 1999
10:30am From Ron, via email:
Well, another word with Mom's doctors cautions against
over-optimism. The clear signal is that she has a long way to go and will experience
hurdles which she has to overcome.
HURDLE 1
I learned a new word today 'ICU psychosis'. The reason Mom is thrashing around is
because 1) she is sleep-deprived due to all the monitoring equipment beeping around her 2)
she really does not like the breathing tube down her mouth 3) of all of the drugs they are
pumping in to her. The result is that she is disoriented possibly frightened and in
discomfort. So much so that she could be hallucinating.
We spoke with a doctor this morning who recommended that we consider an incision in her
trachea (tracheotomy) to help her breathing instead of the tube down her throat. She
will need a machine to help her breathe for a while. Despite it being another
invasive procedure, it has many things to recommend it. These are: 1) it will relieve her
discomfort (try keeping your mouth open for days) 2) medical staff can tune breathing
apparatus better 3) she has a reduced risk of ear and nose infection.
HURDLE 2
Because of her artificially suppressed immune system which lowers the risk of liver
rejection, she is acutely susceptible to infection. Her white blood cell count is up
which is a sign of infection. This could be due to the following: a) there is a
fungus which occurs every where in the air. Due to her weakened immune system some
have settled in her lungs. b) Another more dreadful possibility is her body is
rejecting the liver. At the moment, there is no cause for alarm. They are
running more tests.
Hurdle 3
She is scheduled for surgery on Monday to close up her abdominal muscle.
That's it for now. I never realized just how far mom's good works radiated from her
like ripples in a pond. We have been receiving a steady stream of well wishers from
near and far. Today Neil Santos and wife Jennifer will visit her, along with my
dad. I only hope that the surge of optimism welling in my chest and stinging my eyes
is not empty. Bye for now.
- Fri, October 22, 1999
10:30am From a phone call to Rommel:
The operation to close the muscle layer on Carmen's abdominal
wall is tentatively scheduled for Sunday. You might recall that they were unable to
do this after the transplant because her body was too swollen with retained fluids.
They are testing her for any infection today because her white blood count was a little
high. Her liver enzyme values are fluctuating, but this is considered to be normal
for a new liver that is adjusting to its new surroundings. Generally, though, her
lab values are normal , her vitals are returning to normal, and she remains stable.
There are even more signs of stirring in her. She tries
to move her legs and shift her body. Yesterday, she opened her eyes, but the
doctor's doubt that she can actually see anything yet because there was no eyeball
movement. She also tries to talk, but she is physically unable to do this because of
the breathing tubes that are still in her throat.
The doctor's say that Carmen will be in the ICU for at least
another week, and in the hospital for another month after that.
- Thurs, October 21, 1999
11:00am From Ron, via email:
"News continues to be good. There were no negative
trends over night. They had to stop kidney dialysis over night because blood tends to clot
in the dialysis machine. However, they determined that her system could do without it and
the renal team are meeting this morning to decide whether to continue 'normal' dialysis or
go with a 'kinder gentler' version.
They have weaned her off the sedation completely and she is
now on pain killers, which work on the pain receptors (i.e the body) instead affecting
regions of the brain. She is now displaying her normal feisty behaviour. Last night, when
family members visited her, she seemed to recognize their voices and moved her legs,
twisting around in bed, so much so that they had to sedate her. She did this to me this
morning. This is encouraging news.
However, she is so vigorous in her movements that I'm
afraid she will tear tubes from her body. Is she confused? The nurse tells me that ammonia
in the body lowers your state of alertness. Is she scared? I tried to reassure her that
everything was OK, it was me that was next to her. Is she disoriented? It's really very
hard to tell. Is she in pain? She grimaced a few times. Does she want to communicate with
us? Finally I was so concerned that I told the nurse and she increased her level of pain
killers.
We know that pre-operation, she fought the breathing tube
that was inserted in her throat, so this could be another reason for her thrashing. Tita
Glo mentioned that Lola Luz fought that tube in her throat too. Anyway, I welcome the fact
that this is the only issue I can report on today.
Anyway, I close with my usual musings about this situation. I
remember as a child, teenager and even young adult I would sometimes recoil when my mother
said 'I love you'. As if that sentiment was a repudiation of my attempts to form my own
identity apart from hers. What I wouldn't give to hear those words from her lips once
more. Peace."
- Wed, October 20, 1999
10:30am
From Ron, via email:
"In general, her condition is stable. However,
consistent with doctors' warnings, her condition continues to go up and down in the short
term. They have revised the earliest date for her surgery to sew up the abdominal muscle
from Friday to Saturday/Sunday. What a difference a 8 - 10 hours make. Last night, doctors
were very optimistic that the surgery would take place as scheduled. Her fluids continued
to go down and there was talk of removing the breathing tube inserted into her throat.
However, at midnight she developed an arrhythmic heart beat which lowered her blood
pressure. They were able to correct it, but according to a doctor on the transplant team
"they had to give some of that back". The way that it was explained to me is
that doctors wanted to speed her recovery a bit so that they could proceed with sewing up
her abdominal muscle. They seemed to have revised this strategy and allow her to recover
at a slower pace.
Over the long-term, news is promising there as well. Her liver enzyme levels have
decreased slightly. This is a good thing as high enzyme levels are an indication that the
liver isn't functioning properly. They conducted an ultrasound to see if there is any
bleeding from the blood vessels of the liver. None were found. So, the critical factors
for Mom's long-term survival are holding: her body hasn't rejected the liver and there is
no hemorrhaging. I think I spoke to a resident, so I will speak to the more experienced
Dr. Kaufman about what's happening. More news is possible today.
Tita Glo and Tito Mon arrived here at 11PM last night. I
haven't been able to see them because I left the hospital before they got there. I have
the early morning shift.
Anyway, I'm in the mood to wax poetic here, possibly because I'm almost delirious with
fatigue and writing my thoughts makes me feel better. Sometimes it takes a brush with
mortality to identify what your true priorities are in this consumer-obsessed,
Internet-wired, bull market-driven, global economy we call 'life'. Then you realize just
how fragile, beautiful and precious as fine white porcelain are the ties that bind you to
your loved ones. Good fortune to us all."
- Tues, October 19, 1999
12:30pm
From Ron, via email:
"I spoke to Dr. Orloff, the attending physician and her
surgeon. Her condition has improved from yesterday. Considering that she was as
close to death as you can be before the operation, she has made good progress. All
trends are upward. Her long-term survival will not be known yet for another 3 to
five days. The liver may fail, but so far it is working. The next 24 to 48 hours are
key. In the short-term, the news is very good. A lot of the pre-operation concerns are
starting to become less so, but very slowly. There is no sign of brain damage due to
pressure in the cranium, so much so that they have removed the device which monitors this
from her skull. She is moving spontaneously and is responsive to our voices and
encouragements. Another good sign of no neurological damage. Her kidneys are still not
working and she is on dialysis. However, there is optimism that they will start again.
Even so, there may still be the possibility of permanent dialysis for the rest of her
life. At the very least she will be on dialysis for a month. Her blood pressure has
recovered, this was a major pre-operation concern. So much so that they have taken her off
dopamine, which promotes blood pressure but does internal damage to organs if taken for
too long.
The next hurdle for her is that they have to close the abdominal muscle from where they
inserted the new liver. She has to be strong enough to survive this operation. The very
earliest they are predicting for this procedure is Friday. For them to do this necessary
operation she has to be the following. a) Alert b) the fluids which she is producing and
is bloating her body and face need to be reduced.
That's it for now. You should all believe that your thoughts prayers, best wishes have an
effect because her progress to this date has been remarkable ... even miraculous."
10:30am From a phone call
to Rommel.
It is confirmed that Carmen is not only responding to voices,
but to what is actually being said. Rommel asked a nurse by her bedside if her
kidneys were "still bad". Carmen evidently heard it because her heart rate
shot up by a lot. Her reaction is an extremely good sign that she has not suffered
neurological damage. Her heart rate and blood pressure also go up (higher than the
doctors want) when she is asked questions, and when she tries to talk. Because of
this, the family was asked to refrain from asking her questions and discussing her
condition where she can hear them. At least low blood pressure is no longer a
problem.
Also, the intra-cranial pressure shunt that was embedded in
her skull has been removed, as has a few arterial tubes and IV drips. Another great
piece of news is that she has produced a small amount of urine, bloody, but it still
indicates that her kidneys are on an upturn. The doctors confirmed yesterday that
her new liver was definitely working.
Rommel described the doctors as having a "guarded
optimism". When asked whether Carmen will definitely survive, a nurse answered
that "we won't know that until she sits up and tells us herself". Lets
pray for Carmen to gain the strength to do just that!
|
