June
5: Parker's cardiology visit on May 24 went well. At 83, his blood oxygen saturation
levels were a little bit lower than last time which is disappointing but not a problem. The waiting game
continues on whether the fenestration will close. Parker will return to the cardiologist in 6 months and at
that time they will do an echo and perhaps discuss closing the fenestration in the cath lab. With the fenstration closed, the
blood oxygen saturations should improve.
The former "Little Man" is
turning into a "Good-sized Boy". He weighed in at 28 1/2 lbs and was 34 1/2 inches tall.
But don't call him either
of those names: He's just realized that Parker is his name, and his alone. If you say, "Come here and see me, Buddy"
he'll correct you by saying "Parker" quite definitively, with a firm nod of the head. He also likes to admire himself
in the mirror: "Parker!" (hmmm....wonder which family member he inherited that from).
He's also starting to string
syllables together ("Na-na-no" complete with gestures for I don't know) and is experimenting with two-word sentences
("Bub plane"). His vocabulary took a major leap in April, during a family trip to Disney World. No one suspected
he'd already learned the names of almost all of the Disney characters but he called out to them as soon as he saw them.
He and his buddy Spencer attended a gymnastics program in
April and he's still demonstrating all he learned, including kicking like a donkeye and doing somersaults.
March 1: It only took
a few weeks for Parker to bounce back to normal. He now weighs a healthy 25 pounds 9 ounces and is going strong.
One of his favorite activities continues to be "picking up chicks" at the grocery store. His pick up line is a straight-forward:
"Hi" said in varying tones.
An assessment by the local
early intervention program on February 28 showed that his developmental progress is well within the normal range for children
18-20 months old. Heidi has requested play therapy to help promote his large motor skills.
Parker
was all smiles during his follow-up visit to Dr. Humes today. With only a sucker and a movie for sedation, he stayed
quiet and still during a 10-15 minute electrocardiogram. The procedure showed a high-mild to low-moderate valve leakage
that will be watched for the next several months. Parker's blood saturation levels were slightly improved from last
time, ranging from 84-86. These were encouraging, especially since the little guy has a stuffy nose. He continues to take enalaphril.
Last month, Sisters Libby (Parker calls her LaLa) and Abigail jumped rope at their school to raise $700 for the
American Heart Association's Midwest Affiliate. Their efforts have netted them tickets to a Pistons game in April.
February 22: It only took a
few weeks for Parker to bounce back to normal. He started with neighborhood trips in the stroller to visit Lee and Luke,
then worked himself up to snow play with his buddy Spencer. Last week, he delighted Great-Grandma Benn
by walking the length of the main hallway at Kinghaven to ask for a ride on her wheelchair.
He'll visit Dr.
Humes again on March 1.
Parker made the front page of The Heart Beat,
the first Metro Detroit Heart Walk Newsletter. To access the newsletter, go to the weblink below this section.
Sisters Libby and Abigail
also helped the American Heart Association by joining other children at their school to jump rope to raise funds for the AHA's
Midwest Affiliate.
February 3: Parker made
a post-op visit to his cardiologist, Dr. Humes, on Tuesday, February 1. He demonstrated his growing awareness of all
things medical by screaming when he was undressed. Heidi said she felt he was truly terrified about what might be happening
to him and wouldn't let go of her seleeve for the entire visit.
Not to worry, little man.
Dr. Humes was really quite gentle and didn't even require an echocardiogram. The good doctor found that Parker's blood
saturation levels were 82 (lower than hoped for but not worrisome). Dr. Humes said that the levels could improve
over time. If they don't, the fenestration can be adjusted fairly easily in the cath lab.
Another residual sign of Parker's
recent ordeal is his new-found fear of balloons. There were balloons hung over his bed after the surgery.
When a well-meaning cashier at Trader Joe's offered Parker a balloon he reached for it enthusiastically, thought better of
it, and then burst into tears.
January 25: Heidi said
yesterday, "Parker continues to do well. I can tell he feels better each day because he is becoming more and more
mischievous. He's getting into things (love those cable connections!), chasing his pal Izzy, and standing up in his
highchair. Who'd ever think that having a "bad boy" would be such good news!"
The girls and Izzy returned home over the weekend bringing lots of love for Parker and lots more work for mom! Heidi
says, "It takes some readjusting but I wouldn't have it any other way."
January 21: Heidi and Frank are delighted to
have the little man back at home where he belongs. Parker has his parents all to himself as everyone adjusts to his homecoming.
Sisters Libby and Abigail are camped out at Grampa Herb and Granny Judy's and Izzy the dog remains at the McLaughlin's.
Heidi reports dramatic
improvements in his recovery process over yesterday, saying "With a snap of the fingers, he's back on track.". She's
updated his formerly weak and pitiful condition to "fine but not yet great." His coloring has lost its bluish hue, indicating
improved blood oxygen levels. He's back to sleeping though the night.
His incision is only a minor
annoyance--his itchiness suggests that it's healing well. In fact, the only pain he's experiencing is from a major case
of diaper rash.
Parker's enjoying homecooking
and is moving around on his own with renewed confidence and strength. He greeted a visit from his sisters with smiles
and hugs and played peekaboo with Granny Judy.
Parker will remain housebound
for now, probably until his follow-up visit with Dr. Humes in two weeks. Visiting is greatly restricted. Please continue
to communicate via the guestbook and email.
Many thanks
to everyone who has sent their prayers and good wishes during Parker's surgery and the early post-op period. There were 21,698
visits to the website in the last week!
January 20: Heidi said last night, "When I buckled Parker into his car seat today as we left the
hospital I felt more joy than I ever thought possible over buckling up!
Back at home, Parker started
crawling, investigating his familiar surroundings. In time, he stood and then tried a staggering walk and even a wobbly
dance. Heidi says that Parker's still so weak that he can't be left unattended for fear he might fall over.
He has started eating Mom's
home cooking and is drinking liquids but his appetite is nowhere near pre-op levels.
Everyone hopes that as he
returns to normal activity his blood oxygen levels will increase.
January
19: All the abdominal issues Parker was experiencing yesterday
have been resolved and he was discharged early this afternoon.
January
18: Parker has overcome most of the major hurdles
and is on track to return home in the coming days. He only faces one hurdle and it's making him miserable.
He's so constipated from
the morphine that he's in great pain and refuses to eat or drink. He's only eaten part of a yogurt all day.
Because he's not eating,
he's very weak. For example, he can stand but can't walk. Instead, he crawls on his bed. Mom and Dad have
provided numerous outings in his wagon throughout the day.
The IV is expected to start
running again this evening. And stool softeners will join Tylenol on his list of nighttime meds.
Heidi says her goal is make
sure that Parker is comfortable. She wants him to remain in the hospital under the watchful eye of the staff
until his pain subsides and all systems are in working order.
January
17: Yesterday, Parker became more animated but he's still
quite reserved. Heidi says that the strong pain medications they gave him in the PICU caused dramatically different
reactions. On morphine, he was knocked out cold. On verced, in contrast, he was a chatty, happy drunk "like Frank
on six beers."
But the party's now over.
By noon today, Parker had been moved out of the PICU (where they use the more powerful drugs) to a private room at the
hospital. Heidi will be able to stay there with him: She's particularly grateful for the cot and private bathroom with
a shower that they've given her.
A goal for today
was monitoring the drainage from Parker's last remaining chest tube and finally removing it. He now has only a maintenance IV and lots of monitors to contend with.
The IV will be
removed once they can convince him to eat and drink at his normal levels.
January
16: On Saturday night, Heidi wrote: "All
goes well--slow and steady wins the race right? We are making slow and steady progress. He should be moved out
of the PICU tomorrow. The chest tubes continue to drain a good deal so we will have to wait and see that my be a long
wait....hope not! Tell everyone that we read their message all the time and we love them!"
This morning, she reported
that our littlel patient continues to seem somewhat flat or distant. He's lost the look of a "bad drunk" but
doesn't track easily and certainly hasn't returned to his smiley self. So far, he's mouthed the word "Mama" when he
was extubated and delighted his Dad by saying "football" when the television was turned on. Not surprisingly,
he's suspicious when anyone enters his room.
The staff removed one of
two chest tubes this morning--making him somewhat more portable. Grandpa Miklos got the honors of being the first one
to hold him.
Parker continues to have
a nose canula for oxygen, an IV for pain medications (which range from Tylenol to morphine), and numerous wires for monitors.
Although Heidi has asked
that they keep him in the Pediatric ICU for as long as possible, he is likely to be transferred to the pediatric unit in the
next day or two.
January
15: Not only has he been extubated but Parker also
has been removed from the oxygen tent. No chest tubes were removed today but he did get his first post-surgery bath.
Heidi describes him as "OK;
a bit uncomfortable, and a little withdrawn." In short, he's still not back to his smiling self.
Tomorrow he should be moved
out of the ICU--which will give everyone reason to smile.
January
14: Today has been relatively uneventful as they gradually
wean Parker from sedation. He's still quite drugged but has had flitting periods of awareness when he tries to focus
his dilated eyes.
The
nurses felt that he was sleeping on his own by this afternoon and waited for him to wake up "of his own accord" before
making another attempt at extubation. Getting him to breath on his own was a primary goal in order to maintain adequate
blood oxygen levels.
Heidi reported at 5:30 that
the extubation was a success and Parker is now resting much more comfortably in an oxygen tent, where he is expected to remain
until tomorrow. Remarkably, he is not on sedation or pain medication right now.
One chest tube was removed
today and two more will probably be removed tomorrow.
January
13: Earlier this morning, the ICU staff removed
the wire to Parker's heart. They began weaning the heart meds and planned to extubate.
When Frank and Heidi arrived
at the hospital, they were told that an attempt to extubate "didn't go well" so he was placed back on the ventilator
until tomorrow at the earliest. Despite this, his blood pressure and blood gas levels remain at acceptable
levels.
Heidi says Parker is
thrashing in his prone position and fighting against the sedation. As a result, his medications have been changed in
an attempt to keep him from moving around. In short, the goals for today are to keep him sedated and comfortable
to let the healing process begin.
A post-op photo has
been posted in the Surgery Record section of this site--not for the faint of heart!
January
12: The last stage of a three-part surgical procedure designed to
optimize function of Parker's heart is scheduled for today at Children's Hospital of Michigan. (See the tab labelled
"Treatment" for more information about the procedure, called the Fenestrated Fontan.)
Parker and his parents reported
to the hospital at 7:30 a.m., with surgery scheduled for 9:00. Yesterday, the anesthesiologist predicted that it would
take approximately 2 hours to open the chest wall and another hour to set the lines (central line, pacer wires,
chest tubes, etc.).
Heidi reports that opening
the chest didn't begin until 11:00; placement on the bypass machine began just before 2:00. Just before 4:00,
Parker's waiting parents and grandparents received word that he'd been removed from the bypass and that the process of closing
the chest had begun.
Parker is out of surgery
and is being monitored closely. Heidi reports that they were able to see him briefly and he looks "really
good."
Dr. Walters said he was happy
with the way the surgery progressed. The surgery was relatively dry (with little bleeding) and uneventful after a delay
when the doctor was called out of the OR just as the surgery was about to begin. The procedure included insertion of
a 4 mm fenestration (a kind of release valve). The procedure went as planned and Parker's condition remained stable.
By 7:00, Heidi and Frank
were able to grab a quick dinner while the grandparents visited with Parker. They called from the restaurant
to report that Parker was doing fine, although a bit warm from having his blood "overcooked" before returning it to the
body. He is on a ventilator, with three drip lines for heart medications, a central line to the heart, and other
chest tubes or wires. The pacer wire was needed earlier this evening to pace his heart rate but the heart soon
returned to its own good rhythm.
Right now, the post-surgical
team is waiting for the little patient to begin to awaken from the anesthesia before they fully sedate
him for pain.
They will be monitoring his
recovery closely in the coming days, matching their treatment to signals of what he needs and is able to handle.
Frank and
Heidi used a computer in the hospital's new ICU waiting room to access messages left on the website guestbook.
They send their love and thanks to all those who have helped them and Parker in so many ways today.
