This morning around 6:00 Parker's machine began alarming. I stumbled out of bed and nearly slept walk to his room. This is a nightly occurrence- actually multiple times a night- for us so I believe my body is programmed to go through the motions. When I got to the machine, it read "low drain volume". This usually means he has the line kinked and fluid can't pass through. So I go to pick him up and EVERYTHING is soaking wet. My first thought is "Dammit he pulled his feeding tube out". By this time I am wide awake. I turn the lights on and start searching for the problem. His feeding tube is still in. It is not leaking or busted. Maybe he just puked? So, I take him out and strip the bedding off. I go to change him and start examining his dialysis catheter to ensure its in one piece . Sure enough, there is a big hole in it, which can be extremely dangerous. We immediately get sterile gauze and tape and cover the exposed area. We call the on call nurses to tell them what's going on, pack all of our bags, and head to Children's Hospital.
Luckily we were able to repair the existing catheter, instead of requiring surgery to replace it with a new one. They took a specimen to check his cell count. If his cell count were high, infection was already growing. In that case, we would be admitted.
There are angels watching over us as always, though. His cell count came back at 9. PERFECT. So as we speak, I am on the interstate-in the passenger seat- with my big boy in the back seat and we are heading home! We will do a few days of antibiotics in his dialysis just to be safe, but honesty we did not expect, nor could we have wished for a better outcome.
My little buddy always has to keep us on our toes.
Today was a very informational day. We only met with the head of nephrology today, Dr. Veheskari. He cleared us to begin the transplant "process", but there is a long laundry list of things that need to be done before the transplant committee deems him eligible for surgery.
We have to first meet the surgeon. She will examine Parker to determine if his current size and health are ready for transplant. One concern that was mentioned is the size of his liver, which is common for PKD patients. He said that with his liver being larger than normal, it may make things more cramped and difficult. If this is the case, he will have to grow a little more length wise before the adult kidney would fit. What I did learn today, though, is that the adult kidney will eventually shrink to fit Parker and grow with him. I did not realize this, and think that it is extremely cool. After the surgeon examines Parker, if she decides that he is ready, we have to do the following: an echo cardiogram of his heart, tissue sampling, blood work, and possibly a bladder study to see how much volume his bladder can hold- since it has never really been used.
Jason and I have to meet with a psychologist. This is to determine that Parker is in a stable, compliant home. Basically they have to make sure that once he is transplanted we will take care of him and his new kidney the best that we can. The government requires this to ensure that viable organs are not wasted. I know with all my heart that this is not a problem for us. We fight tooth and nail to make sure Parker's care is nothing but the best. We also have to meet with a social worker to discuss the insurance and financial aspect of everything.
In the meantime, we have to make sure he is up to date on all of his vaccines, especially hepatitis B and MMR. They may add the Hepatitis A shot, but at this point that's not clear. We have to make a dental appointment and make sure that any dental work that needs to be done is done now. I don't think this will be an issue. He's young and doesn't eat food quite yet.
After ALL of this, the transplant committee will meet to discuss his case and determine if he is approved for surgery. All in all today was a good day. We learned a lot, and now know what needs to be done in order to get this ball rolling.
We were watching Mickey while waiting to see the doctor.
As you can tell, Parker is worn out from his early morning. It did not take long for him to crash out.
We are on our way to meet with the transplant team for the first time. Eek! So exciting and yet nerve racking at the same time. In true Porche fashion we are late, so at this point we are hoping they will even see us. Parker had to be hooked up to his machine much earlier than usual in order for us to leave in time. He usually fights his sleep until 11 o'clock every night. Last night, miraculously, he went to sleep at 9:30. A few alarms during the night extended his treatment and caused us to run a little late this morning. We are all dressed up and ready. This morning Parker was 10.45 kg, which is over the required weight for surgery. We are hoping we can get this process started and begin testing donors as soon as possible. I will post again after we leave. So keep us in your prayers that they agree to see us, even though we are late, and that we get good news!
I'm not even sure where I should begin. So much has happened in the last few months since my last post.
The holidays have come and gone. Thanksgiving was spent with family celebrating and eating yummy food. Christmas, however, was germ stricken. Parker started getting sick around the 19th of December and eventually ended up in the hospital. Not until we opened our gifts, though. Since we were a little under the weather, we spent Christmas Day at home, just us. It was actually quite relaxing. I'm thinking of starting this as our new tradition!
Just a few days after Christmas, Parker's cough took a turn for the worse. We found out that it was actually RSV. His oxygen levels were dipping into the 80's and we ended up having to spend a few days in the hospital with a nasal cannula, just to give him an extra boost to breathe.
While he was having such a hard time breathing, we had an even harder time getting him to eat. When he would suck the bottle, he was getting even less oxygen. So, we decided to put an NG feeding tube in to give him some relief.
He tolerated the feeding tube really well, so we left it in. At this point, we were still getting grief from his kidney team to get more calories in him, so this tube made his renal team happy.
Just a few weeks later, Parker ended up getting peritonitis- infection of the dialysis area. This means another hospital stay with antibiotics via dialysis.
While we were in the hospital, Parker learned all kinds of new tricks. He learned to pull himself to stand; therefore, we had to raise the rails all the way up on his crib-or "prison" like we call it.
He learned to clap. He now claps along to music and especially loves clapping for himself. Even when he is being fussed.
Once we were home and germ free for a while, his weight picked up significantly. He is now a whopping 10 kg-the required weight for transplant! We meet with the head transplant nephrologist, Dr. Veheskari on March 27th. Hopefully, he will get the ball rolling on testing.
We found out today that his spleen is enlarged. We knew that his liver and spleen would be involved eventually. It's actually part of this disease called CHF-Chronic Hepatic Fibrosis- that comes with ARPKD. The trick is they cannot tell you when the liver will deteriorate, or how bad it will be. Each case is different. The good news is that Parker's liver looks great other than being really big. We just have to monitor his spleen for now and see how fast it progresses.
Overall, we are doing really well. He is happy, usually healthy, and growing-both physically and developmentally. His therapists are proud of his progress and we are beyond ecstatic. He crawls, scoots, pulls up on furniture, and walks around holding onto the furniture.
This article has me in emotion overload. I do not know whether to feel hopeful that its possible for an individual to receive so many life saving kidneys, or saddened by the way his life made him feel. I will let you read and see for yourself.
Living on the kindness — and four kidneys — of donors
Irfan Khan / Los Angeles Times
David Trujillo shows a self-portrait. Trujillo, 29, was
diagnosed after birth with renal dysplasia — his kidneys were too
small. “David’s unlucky,” his surgeon said. “But he’s also lucky,”
referring to his four transplants.
By Corina Knoll, Los Angeles Times
David Trujillo's torso
is a web of scars. Shunts in his arms, hoses in his stomach, garish
gashes left from biopsies and scalpel incisions. In the summer when he
goes shirtless, people often stare. Sometimes, to lighten the mood,
he'll say he was bitten by a shark.
In reality, his body tells the
tale of multiple bouts of kidney failure. David recently received yet
another transplant. No. 4. He is 29 years old.
According to the
United Network for Organ Sharing, only about 150 people since 1988 have
received four kidney donations. That's out of more than 326,000 total
kidney transplants.
In the year leading up to his latest surgery,
David would visit a San Dimas dialysis center to have toxins removed
from his blood. Four hours a day. Three times a week. The treatments
left him weak and drained. He lost 40 pounds.
His operation Sept.
26 took eight hours — twice as long as normal because of extensive scar
tissue left from previous surgeries. A full recovery is not expected for
three more months. For the time being, David is fatigued, his body is
sore, and it's difficult to walk.
Still, he knows he is fortunate.
His fourth kidney came by way of a brother. His father, an uncle and an
aunt have each donated kidneys in the past.
"David's unlucky," his surgeon said. "But he's also lucky."
At
just one month old, David was diagnosed with renal dysplasia. His
kidneys were too small to function and the doctor told Danny and Maria
Trujillo to call their pastor.
But a different physician suggested
the two look into UCLA's division of pediatric nephrology, which had
started a program for infants. Soon David was undergoing dialysis every
night via a machine next to his crib at home.
As a toddler, he
hated being pricked with needles and put up a fight whenever it came to
doctor's visits, pushing and screaming as his parents dragged him to the
car.
"He would cry, I would cry, my husband would cry," Maria, 52, recalled. "David would ask, 'Why, why why?' "
Then David started saying in a small voice that he'd rather not live anymore.
"That
still hurts," said Danny, 54. "I told the doctor, 'My son's telling me
he wants to die. We need to do something different.' "
Nearly 4 by
then, David was old enough for a transplant, but the wait time was up
to 10 years in California. And he was O blood type, which meant finding a
match could be even more difficult.
His father offered his own.
Doctors
had to crack Danny's ribs to remove the organ, but the surgery went
well. When the kidney began to shut down after 10 years, Danny talked
futilely of donating his other one.
David's uncle, Art Trujillo,
was 26 at the time. He usually saw David only on holidays, but he didn't
hesitate to take a blood and tissue compatibility test.
"It
seemed like a small thing — just, 'Here you go, get it done, give him a
chance,' " said Art, now a 44-year-old phone technician living in Apple
Valley.
Art's donated kidney lasted for eight years.
In
2003, it was Yolanda Trujillo who asked to donate. An aunt by marriage,
something told her she held David's third kidney. My heart says it's me,
she insisted.
The La Puente resident was on vacation in Mexico when she got the call. She was a match. Excited, she spread the news.
"Everybody
looked at me like, 'Are you crazy? A kidney's a big part of your body,'
" recalled Yolanda, now 57. "I'm like, 'We just need one.' "
By the time David needed a fourth transplant, most of his family members and friends had taken the required tests.
His 25-year-old brother Dustin, too young in the past, would donate this time.
But
a month before the surgery, doctors deemed the brothers incompatible.
David's body had developed antibodies to Dustin that drugs wouldn't
knock down. The downside of transplants is that for every one received,
the body makes it more difficult to find a match for the next.
Instead,
Dustin took part in UCLA's kidney exchange program, donating to a
stranger. In turn, one was given to David. Both surgeries were performed
the same day.
The younger brother, who works at a motorcycle
repair shop, shrugs when people ask him about such sacrifice. "For us,
family is always first."
Anyway, the Trujillos said, kidney
donation is not as scary as one might think. So far, those who have
donated have experienced easy recoveries and feel just as healthy as
before.
It is David who appears the most burdened by the gifts.
This fourth one comes at a time when he finds himself changed — pensive
and reflective.
"What do you give somebody," he asked, "who has given you a piece of him?"
Half
of David's life has been spent in hospitals. Transplants gave him
reprieve, stretches of time when he'd feel healthy and whole. But the
slightest cold could mean an overnight stay because of possible kidney
rejection. Then there were the experimental medicines, constant
headaches, muscle pains, fits of vomiting.
His earliest memories
are of drawing pictures of the nurses while sitting in bed, of his
father rising from the cot beside him to pull on jeans and boots before
heading out to work construction. His stay-at-home mother was chauffeur,
fighting traffic on the 40-mile drive from their three-bedroom home in
Covina to the UCLA hospital in Westwood. His three siblings were often
watched by their grandmother. He only grew to 5 feet 4 inches. His
brothers towered above him.
Kids made fun of his puffy cheeks and
premature facial hair — the result of medication — and small stature.
The taunts and names stung. He left seventh grade to be home-schooled
for a year.
At 18, David tried to enlist in the Marines but didn't
get past the medical exam. An attempt to take business courses at
Citrus College in Glendora was short-lived as doctor's appointments
caused him to miss too many days. His health also kept him from a steady
job.
The perpetual illness began to make him bitter. Other people his age seemed so carefree.
He
lashed out, began hanging with a crew concerned only with parties and
raves and clubs. He dabbled in drugs, drank with his new friends, blew
off doctor's appointments, missed taking medications. If he came home at
all, he'd soon head back out again. None of it made him feel better
about himself. And he was still sick.
Then one night he found
himself at his parents' church. A Christian metal band performed. The
members all looked like him — young with piercings and skin inked with
tattoos.
"They looked like bad kids but were preaching the gospel.
I was just looking at them like, man, I want to be like that," David
said. "These guys found the peace and love that I wanted."
He
called his mother, his words masked in tears, barely intelligible, and
said he regretted shutting them out and he was done with his old life.
"After that, I never looked back."
He stays around the house now, mows the lawn, sketches in his room, tries to keep busy.
It's
been a few years since that dark period, and David is thankful his
family never reproached him, never made him feel unworthy of their
donations.
He wishes he didn't require so much from them.
It
helps that his girlfriend began driving him to dialysis and reminds him
about his daily medications. Brittany Vis, 22, takes his condition in
stride: "They say in sickness and in health," she said.
When being sick is a way of life, time becomes a peculiar thing. It can be slow and cruel, like a sentence that seems infinite.
But
it can also race at a terrifying speed where a young man feels old,
feels the pressure to take chances. It's why David once dived off a
90-foot cliff into a lake while visiting a friend in Tennessee. It's why
he talks about attempting bungee jumping and sky diving once he's
feeling up to it.
Mostly, though, David is eager to get married,
have kids, create a family that echoes his own. But he worries about his
girlfriend becoming a caretaker.
He hopes this kidney will hold
out even longer than the last, keep him far from the dialysis room so he
can spend time inspiring others to donate.
He'd like to reach out to young donor recipients, tell them his story,
hope they learn from his mistakes. He knows how chronically ill children
can feel alone.
Although diagnosed with stage five renal failure,
which means a total dependency on organ donation or dialysis, David
sees a rich future.
His family has given him yet another chance at life. He is anxious to live it well.
Today was Parker's dialysis clinic, which was a day long adventure at Children's Hospital. I'm always nervous when it comes to these appointments, because there is so much stress on his growth and lab values. Today, though, was a good day. Today we sat down with the transplant coordinator and signed consents to begin the transplant evaluation process! He gave us our "transplant packet" and went over everything with us and answered all of our questions. He is calling our insurance to get approval on getting the testing started. And next month we get to meet the transplant Nephrologist and transplant surgeon to discuss things further! For once, I am excited for our next appointment!
Once our insurance approves the evaluation process, we can start having potential donors tested. Once we find a match, and he reaches 10 kg, which is 22 lbs., he will be ready to get a new-slightly used-kidney!
Is absolutely no fun! I hate to see my "punkin" feeling miserable. We spent the day at the pediatrician's office and Parker has an ear infection, bronchitis, and sinusitis. He received a shot while we were there, an antibiotic, and is starting breathing treatments. This is the first time he truly has symptoms of an illness. He had the flu in March, but only had fever and fatigue. This time we have the snotty nose, congestion, cough, and rattle in his chest. His poor ear looks like it's about to be pulled off in the mean time.
