April 24, 2003 (Day 23 Post-Transplant)
Well that was the shortest
release in history. Yesterday morning Alex had extremely high blood
pressure, which they treated at clinic. Last night around 9:30 pm she became
dizzy while walking to the bathroom and grazed her head against the
doorframe. We didn't think much of it, but 45 minutes later we noticed that
her eyes were glassy. As soon as we asked her how she felt, we knew
something was wrong, as she was unable to answer coherently. We suspected
she might have a concussion, so we immediately brought Alex to the Duke
Emergency Room. On the way to the hospital Alex had a couple moments of
lucidity (e.g. we did a knock-knock joke together), but for the most part
she was incoherent.
Once we arrived at the hospital they took her blood pressure, which was
normal, and scheduled her for a head CT scan. Thankfully the CT scan showed
no internal bleeding, but Alex's condition deteriorated until by 3 am she
was no longer talking or reacting to anything around her. She was just
staring blankly into space. This lasted for around 6-7 hours until late this
morning when she started to show signs of understanding what was going on
around her. She is still unable to talk, but she can comprehend what is
being spoken to her and is answering by nodding or shaking her head. We were
moved from the ER to the Bone Marrow Unit around 12:30 pm today and will
remain there for a minimum of two days.
Of course I'm sure by now most of you are asking what the heck is going on?!
Well Alex appears to have Cyclosporine Toxicity. Cyclosporine is the
immuno-suppressant that Alex is currently on to keep her body from rejecting
the transplant. In certain cases it can lead to serious toxic side effects
including high blood pressure. In Alex's case the blood pressure in her
brain became so high that it impacted the Language area of her brain. The
good news is that she has been taken off the cyclosporine and given blood
pressure medication to control the high blood pressure. The condition is
usually reversible and if all goes well she should be able to speak again in
just a few days.
Alex will be placed on another immuno-suppressant drug (FK506), as soon as we have
complete confirmation that it is indeed Cyclosporine Toxicity. This new drug
has its own set of side effects, but we're hopeful that she'll respond well
to it. The silver lining (for Andrea at least) is that unlike Cyclosporine,
this new drug does not cause rapid hair growth all over the patient's body.
Or as Andrea says she won't look like "Sam the Eagle" from the Muppet
Show this time!
I'll post more as Alex's condition changes over the next couple of days.
(at least to the apartment...)
Tuesday, April 22,
a new record! Alex was released from the hospital today, only 21 days
post-transplant! The only people more surprised than us, were the doctors
who can't believe how well she has done. Nobody has ever gotten out of Duke
University Medical Center earlier than 23 days post-transplant, so she broke
the record by a full two days. We still won't have confirmation that she's
completely engrafted until further testing is completed in a few weeks, but
for the moment everything is looking good.
Even though Alex is home, there is still a lot of work to do. She will
remain on a 24x7 heparin drip until Day 28 post-transplant, will receive a
number of antibiotics, diuretics & other medications each day via IV and
mouth, and until Day 45 we will need to go to clinic every day. All of this
means that we'll be even busier than usual for the foreseeable future, so I
apologize in advance if there are long delays in between updates.
We did get some bad news today. NCCS turned down our appeal of their
decision, to only help us if we stayed at The Forest Apartments. In their
last email to me they blamed Duke for having The Forest on the lodging
referral list, so I'm now trying to get them removed from that list. In the
meantime we have to come up with an additional $1200/month to pay for the
portion of the rent that NCCS was paying while Alex was outpatient. Just
what we need now, more expenses!
I recently learned that NCCS is
getting a break on the one bedroom apartment pricing from The Forest
Apartments, which appears to be the main reason that they will only work
with them. I know that saving money is important, but is it really worth the
health of a child? We already know of one boy who lived at The Forest during
Alex's 1st transplant who contracted Aspergillus and I wouldn't be surprised
if there are more. I've posted these photos of our old apartment so all of
you can see for yourself what I'm talking about. I've also posted a copy of
the email that I sent to Julie
Komanetsky of NCCS. I sincerely hope that NCCS will change this new
policy of theirs, but until they do we are regrettably withdrawing our
support of NCCS.
Nick continues to do well, except for the fact that he has established a two
hour feeding schedule for himself and often spits up after eating. We've got
a doctor's appointment scheduled for him on Friday, as we're a little
worried that he might have Reflux. Alex had pretty serious Reflux as a baby,
so we wouldn't be terribly surprised if Nick had it also. I'll be a happy
man if that's the worse health problem he ever has to deal with.
As for Andrea and I, we're hanging in there. I'm having trouble finding time
to work and Andrea is in serious need of a day off, but what else is new. I
know it's wishful thinking, but it would be nice if we could find some time
this summer to spend some time at the beach. We just have to make sure that
there's a hospital nearby!
Well it's past 3 am and I'm getting loopy, so I better wrap this up. Thanks again
for over four years of love, prayers and support. Take care.
-- Todd, Andrea, Alex & Nick Martini
Click here to see a video of Alex's release from the hospital!*
*high speed connection recommended
We are in the process of raising money for the expenses we are incurring during Alex's 2nd Transplant At Duke. We have
3 ways in which you can
make a donation:
Mail to: Frontier Bank
c/o Alexandra Elaine Martini
P.O. Box 527
Lake Stevens, WA 98258