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Updates
September 21,
2005. It's been over three months since
Cameron's Fontan, which was done on June 6th at Lucile Packard Children's
Hospital at Stanford, by the oh so talented Dr. Mohan Reddy and Dr.
Gabriel Amir.
We had complications
from day one, when a 5 hour surgery turned into a 12 1/2 hour
surgery! There was uncontrolled bleeding in the O.R., and a missing
surgical sponge issue, lol. Through it all, Cameron was strong and
stable! When Dr. Reddy came out to talk to us, he said Cameron was
awake and had talked to him... he wouldn't tell us what he said! lol
lol Knowing our little sailor, I can guess why! lol When
we were able to see him, I was surprised to find him wide awake and not on
a respirator! :-) Not AT ALL like his other surgeries!
They ONLY thing he was complaining about was that he was thirsty, which
for the first few days, was our big battle! lol He was thirsty and
hungry and they wouldn't let him eat or drink! He was very upset
about that! lol Soon, they started allowing us to give him
ice-chips, and I'll never forget the way he tried to con us into giving
him more than they were recommending! At one point he begged me to
just let him look into the cup to see how much ice was in there... when I
tipped it for him, he lightening-fast stuck his whole hand in the cup,
grabbed a huge fist-full of ice-chips, and tried to shove them all into
his mouth!!! lol It was so funny, and so, so sad and heartbreaking
at the same time! He was desperate!
He had lots of post-op
vomiting issues, his old reflux problems came back, and about 10 days
post-op, his sternal incision started squirting blood! It was crazy,
I have never in all our journey through HLHS felt so panicked and just
completely freaked out. He started running a fever, got the chills,
and before we knew it he was convulsing, one pupil VERY dilated, and his
sternal incision was pouring black blood! You never want to be the
ones that have the alarms going off, with ALL the doctors and surgeons
running in... well, this time, we were the ones! To say the very
very least, it was awful!!! They started him on three different
strong antibiotics by I.V., and by the next morning he was feeling and
acting better. His sternal wound issues were a nightmare! They
opened it all back up to air it out, and it had to be packed and stripped
every couple hours. It was a very traumatic and painful ordeal for
our little man! After a couple weeks of this, they took him
back to the O.R. for a sternal wound clean-out and re-wiring.
We were in the hospital
for over 5 weeks, and during that time we battled pleural effusions, and
way out-of-wack blood levels and electrolytes. He was vomiting the
whole time he was there... didn't want to eat, and was soooo skinny, pale,
and just terrible looking! Just when we were about to lose hope, his
center pig-tail chest drain became plugged, and they had to remove
it! They decided to let it drain from the hole in his chest for a
while before a possible re-insertion in the O.R. After a few days,
they let us go home!! They decided he WAS NOT doing well in the
hospital, and knew that the hubby and I could care for him at home the
same they were doing there at the hospital.
We went home, hole in
the sternum pouring pleural fluids, which we kept a dressing over to soak
it up. After about three days, the fluid suddenly stopped! It
was like a miracle! We couldn't believe it, and kept having x-rays
done, but the lungs were dry!! It was finally over!!!!
Nowadays, I still feel
that he is adjusting to his new circulation. He is still skinny,
although he has gained all the weight back that he lost, and then
some! He has soooo much energy, and feels good!! Currently, he
takes Caumadin as an anti-coagulant, baby Aspirin to thin his blood,
Captopril to lower his blood pressure, Lasix and Spironolactone as a
diuretic. The doses have been steadily being lowered since the
surgery. He's doing great! It's truly amazing, and sometimes I
have to pinch myself because I can't believe this part of his life is
finally over! No more surgeries looming over us like a dark
storm cloud! When I look at him I feel his future is bright, and I
have great hopes for a long, healthy, and happy life for our little
boy!
We are hoping to keep
coming down on his meds, and his Cardiologist says he may be able to come
off most of them completely! Also, he'll be starting Kindergarten
next fall, and we are toying with the idea of putting him in Pre-School in
a couple weeks!
April 12,
2005. Boy, it's been a while again! Cameron has been
doing absolutely fabulous! We couldn't ask for more. He has
tons of energy, and is right on track for all his developmental
areas. He is still a little shrimpy. He is about 4 1/2 years
old now, and weighs about 32 lbs. He wears 3T size clothes.
But is still growing at the same rate he always has. We are hoping
he will catch up by the time he starts school next
year.
I just got off the phone
with Dr. Reddy's office. Cameron will have his Fontan at Stanford on
June 6th. We will go in the week prior for his pre-surgery work-up
and cardiac cath. I am freaking out! I broke down in tears
when I got off the phone with her, and have had to re-apply my make-up
twice since then! I'm at work and trying not to look like a
red-blotched-faced clown with makeup streaming down! lol
Image a doctor telling
you your child has only one month to live. Instead of taking the
month off work, and spending every moment you can with them, you have to
go on with life as usual. This is what it feels like. You have to go
on with work, bills, and smiles, while you are desperate and dying on the
inside! Life is interesting sometimes!
We are taking the
boys to Disneyland in May. We wanted the boys to have some fun
before the surgery...........
July 25,
2004. I never thought there would come a day
when I would start slacking on this journal.... but, since I haven't felt
the need to update this journal in nearly a YEAR.. I suppose it is plain
to say, that day is indeed here. Cameron is doing so well, I really
have nothing to report..wow, I'll type that again, Cameron is doing so
well, I really have nothing to report...! Never in my wildest dreams
did I look at my infant son with HLHS, and think I would ever have days
like these. He is 3 1/2 years old now. This last year was the
first time we have been able to stay home all year.. no hospital stays, no
massive visits to the doctors for various scary illnesses. We've
just been at home, enjoying REAL LIFE, whatever that is. We've been
all over this summer, we rode a real steam engine train, we went to the
county fair, we went to Disneyland, and Cameron went on all the
rides. We had such a blast! Our first vacation, AND our first
time off from work in the 3 1/2 years that Cameron has been on this
earth... the first time we didn't have to use our vacation and sick-time
for hospital stays. We've been taking the boys somewhere nearly
every weekend, and for the first time in a long time, I feel, well, normal
I guess is the best way to describe it. I'll admit I am still
emotionally scared, I suppose that will just take
time.
Cameron just saw his
Cardiologist, Dr. Cooper, and as usual, fell sound asleep during his
ECHO. We got a long, un-rushed look at his heart, and got a great
report! We had gone in a little early, because we had been noticing
some behavior that we thought was strange for Cameron, mostly tiredness
and irritability. His check up great though, and then the next week
we found out what was going on... suddenly his pants were all four inches
too short! Ha! The kid who couldn't grow for nuthin'.. was
suddenly wearing "floods!" So, what we thought was a cardiac issue,
wound up being a normal kid issue! Right now, he's taking a
half a baby aspirin, Spironolactone(Aldactone), and Digoxin. That's
it. And, his G-tube stoma (hole) was closed surgically, by Dr.
Dubois, who did a wonderful job, and Cameron is eating and drinking very
well on his own since then!
I am
very saddened by one thing. A Pediatric Cardiac Fellow, from UCSF,
named Dr. David Gremmels, we found out has moved on from UCSF. I
don't know where he went, but we were never able to say goodbye to him, or
thank him for all he has done not only for Cameron, but for us. He
was the only one who had the courage to allow us to have a little hope in
the beginning, the only one who had the courage to say Cameron had a
chance at life. If anyone knows where he is, please let me know so I
can thank him for all he has done, from the bottom of our hearts. He
will always be our favorite doctor, and we are actually not going to have
Cameron's Fontan done at UCSF, mainly because he is gone. We will go
to Stanford, where his surgeon moved on to, and we are very nervous about
this, but have great faith in his surgeon, Dr. Mohan Reddy. Cameron
will probably have his Fontan next summer, 2005.
August 29,
2003. You're not going to believe this, I can hardly
believe it myself! The MRI results were completely WRONG!
Cameron is fine! His B-T Shunt is open, his lungs are fine, and
there has been growth in his left pulmonary artery! It's a
miracle! His G-Tube broke! So we had it removed!
Since he eats so well now on his own, we thought we would just leave it
out! Unfortunately, his stoma is not closing on its own, like it's
supposed too, so he will have surgery to have the hole closed soon.
Gabriel is doing very
well in school! He loves it! He has a hard time sitting still
in class sometimes, but he is getting better about that, just a big
adjustment for us all. MY BABY! I can't believe he is a
schooler now!
On September 27,we
will walk to raise money for the American Heart Association! I'm so
excited! We are getting a very large team together, everyone seems
willing to walk for this great cause! The heart walk is in Stockton,
CA. That's it for now!
July 16,
2003. Well, a lot has happened again. Cameron is set to
have a cardiac catheterization on July 25th. His B-T Shunt has all
but closed, and only 3% of his total blood flow is going to his left
lung. Looks like he'll be needing surgery again. :-( He
is still running around like a normal kid!
Gabriel will start
school on August 4th! Yikes! As for us, well, we have had two
miscarriages this year. Have never had this problem before, and we
are having tests done to see what the problem is. So far they have
found nothing, and are telling us it's just 'bad luck'. Ya
right!
April 4,
2003. Wow, it's been a while since I've updated this page!
Sorry for that! Cameron is doing great! He is so smart, so
full of energy! Don't forget adorable!!! He has done better
than our wildest expectations. To go from not thinking he would make it,
and being in the hospital all the time, to how he is doing
now...wow! Gabriel will be starting school this year in July!
MY BABY!
We still have no time set for Cameron's next
surgery. He has been very stable ((knock on wood)), so we haven't
thought about it too much, and his Cardiologist says he looks great!
He will be going in for an MRI in the next few weeks to check on his left
pulmonary artery again, but we don't have a date yet. Right now he
has the flu, but seems to be handling it ok...again [[knock on
wood]]]].
Thank you everyone who has been there for
us!
June 11,
2002. Hello all. Cameron's MRI results were pretty
good. He has had some growth in the left PA, although they were not
able to check the lung growth. The Docs there did say that he had
good flow to the extremities, and measured his internal O2 sats at 92
%....I'm not sure that I believe it, but it was good to hear.
We
will continue to pray that he will be able to have a bi-lateral Fontan,
with two functioning lungs. Hopefully the lung and left PA will
continue to grow.
We just moved into our new house in Tracy, CA.,
and I think the move has been a bigger adjustment for him than we had
originally anticipated, but I think in time, he will come
around.
Heart Hugs to all my heart friends out
there!
April 1,
2002. Well, it's been a while since I've updated this
page.....alot has happened. Cameron is doing great! He says
lots of different words, he is almost completely off the G-tube, and is a
very active, delightful child.
On April 4th, we have an appointment
to get an MRI, to check the growth status of Cameron's Left Pulmonary
Artery. As most of you know, he had some stenosis there at one time
from adhesions from previous surgeries, and now has a small left
lung. Depending on the results from the scan, we could be looking
forward to the following possibilities:
If the growth is good, we
don't have to worry about it for a while;
If the growth is slow-going,
we may have to have another surgery in the near future to upgrade his BT
Shunt; or If the growth is poor, meaning no growth, we may not be able to
have a Bi-Lateral Fontan, basically meaning that he will be left with
1/2 heart, and 1 lung. Needless to say, the later of the two,
is our worst nightmare right now. We are very stressed right now
waiting for this scan.
January
22, 2002. Cameron's PC said no way to the MRI for Cameron's back
to check that possible Tethered Spinal Cord. So my husband and I
thought it was going to be some big battle to get him in for an
Ultra-Sound, but believe it or not, THEY CALLED US, and in only a FEW DAYS
! And, the results......NEGATIVE ! NEGATIVE ! NEGATIVE
! OH YEAH BABY !
And, Dr. Cooper says
Cameron's heart looks great, and is 2 mm smaller than it was when he was
in for that weird fever virus !
December 26, 2001. We had a really great X-Mas.
Cameron the last few days has been waking up in the middle of the night to
eat!!! He must be going through some kind of growth spurt or
something. He's doing lots of new things too--one of which-he'll
only drink out of a glass now!! Wants to be a big boy, won't even
drink out of a sippie cup. He He.
December 20, 2001. For those of you who are not apart
of my on-line support network or who are not close to our family--Cameron
was in the hospital last week. He began running a fever of 102
degrees, which only went down a couple of points with Tylenol, and was
acting very lethargic. I took him into the ER on Sunday night at
around 10:30 PM. The docs were concerned that he may have either
Myocarditis or Endocarditis, so once again, we were admitted. We
stayed for 4 days while Cameron was on IV Antibiotics. After lots of
"teeth pulling'" we were able to get all the tests underway, which all
came back clean--so long story short--we are home now, and Cameron is fine
aside from having Diarrhea from the Flu shot he received. We are
scheduled for another Echo at the end of January, at which time we plan to
talk to Cameron's Cardiologist about going back to UC for some
tests--we've been noticing some blueberry impressions lately when Cameron
cries.
December
10, 2001. OK, well Cameron had his Big B-Day! It was
really great to have everyone come, I know Cameron was feelin some serious
love that day. He is totally walking now!(running most of the
time!) And he waves bye-bye, will stick out his tongue if you ask
him what he has just put in his mouth, and covers his head so you can play
peek-a-boo with him(he never gets tired of that!!)
He seems to have
caught a cold or flu or something, so we'll see how that goes, and to
those of you have been following along, we finally have an appointment for
an MRI, to see whether or not he has a Tethered Spinal Cord.(OH
YEAH) His appointment is January 31, 2001.
~ "Life is like riding a
bicycle. You don't fall off unless you stop pedaling."
~
-
Claude
Pepper | |