Bad news from Team Ewan. The doctors got him off the ECMO machine, but a few hours later he began to slip; badly enough that he’s back on it.
We know we have some tough decisions to make in the next day or two. Barring a miracle, we’re faced with the following decision: do we let him go, or do we send him back to the cath lab for a procedure that might rupture his pulmonary arteries?
This family needs your thoughts right now as they prepare to make this choice.
If only you believe in miracles, baby (like I do)
We’d get by
– Miracles, Jefferson Starship (1975)
I was concerned about traffic (traffic in downtown Charleston, South Carolina can be a nightmare; almost every street is One Way) so I intentionally planned to arrive at the Palmetto Hearts Pediatric Cardiology Reunion early. A little too early, as I was the first CHDer on the scene… oops! But the wait wasn’t long, and before I knew it the entire museum was full of Cardiac Kids and Heart Parents. The oldest CHDer I met was a 16-year-old with HLHS (I never got your Facebook Friend request, Johnathan! Try it again, please!) but most of them were under 10 years old.
When you are that young, your heart is roughly the size of your fist. Imagine operating on an organ no bigger than an infant’s fist, cutting it open to find and repair a hole that isn’t supposed to be there. Imagine finding two blood vessels that are measured in millimeters – these blood vessels are connected to the tiny heart but they are in the wrong place, and it is your job to cut them, switch them, and sew them into the tiny hole where the other vessel was.
Imagine looking into the chest of an infant with part of his heart missing. It’s supposed to be the size of a walnut, but part of it is missing, so there isn’t even that much. As my grandma used to say, “There’s not enough space in there to change your mind.” No, there isn’t enough space to change your mind – but there is plenty of room to screw up, to shatter an already broken heart, to ruin a life and a family forever.
I didn’t talk to many of the children – If you were a child, which would you rather do: talk to the adult you don’t know or play with all the cool stuff in a Children’s Museum – but I did talk to a lot of their parents. I heard tales of living in the waiting room.
Staying by the bedside.
Waiting for a miracle.
That’s what I saw at the Pediatric Cardiology Reunion I attended Saturday night… miracles. A lot of them. Walking, talking, miracles.
Just read that Joshua is having a difficult night. His heart rate, Blood Oxygen level, and Blood pressure all fell. Keep him in your thoughts tonight, please.
Update at 6:51 AM (10: 51 AM GMT): Joshua’s mom posted a message to her facebook page that he had “a stable night.”
We have a new Cardiac Kid in our Blogroll, Joshua.The link is to his mom’s blog, as officially Joshua hasn’t made his appearance yet. He’s scheduled to be here on Monday, August 16.
Joshua will be born with Hypoplastic Left Heart Syndrome (HLHS) and his Mom and Dad will be glad to finally meet him… but understandably, they are worried. Any good parent would be! As of right now his first surgery is scheduled for Thursday, August 19.
I am asking each of you to consider passing our story along to your friends, family, and churches. Either just pass our names, a little snippet of what we will be facing soon, or my blog address, his mom writes.
We can do that! In fact, we can do better than that… Everyone take a moment to head over to Joshua’s Mom’s blog and let her know that we’ll all be pulling for them.
Whoa!
A Heart Mom is threatening to go ballistic on someone:
I told my husband what had happened and of course his solution to the problem involved me waving around my giant stick and teaching them a valuable lesson about staring at our small child. While that approach may have gotten some results, not to mention cause a pretty big scene, it wasn’t one that I felt was appropriate for our children to be witness to.
Good thing she kept her wits about her. Local law enforcement authorities usually don’t take kindly to people waving large sticks in public, no matter what the reason. The point of conflict here – as you may guess – was a group of people who seemed to have nothing better to do than to stare at her Cardiac Kid’s scars. It turned into a real whisper-fest, and even though the child was a bit young to recognize what was happening, Mom saw it. And the steam was coming out of her ears.
“You have been weighed, you have been measured, and you have been found wanting. In what world could you possibly beat me?” – A Knight’s Tale, 2001
The basis for this line is from the scriptures, specifically Daniel 5:27 – Thou art weighed in the balances, and art found wanting. The King wasn’t good enough, so God slammed the door on his kingdom, and that very night the King perished. And that is exactly what was happening here: the local wags had seen the scar on her son’s chest; they had decided that he was…. different, somehow, and that wasn’t a good thing; and they had instantly judged that neither he nor his mom were part of the Cool Crew. Too bad, so sad. And as much as I hate to say it, that’s a fairly common reaction.
The hardest battle a Cardiac Kid has to fight will not happen in an operating room, but rather in their schoolyard playground. Kids aren’t necessarily mean, but they are brutally honest. You don’t ask “What happened to your chest?” or “Why you got to get tired all the time?” and they will stare – they’re children, after all. You sort of understand that this is the way children usually act. And Cardiac Kids have to fight these battles all own their on, just like everyone else. It’s how children learn to interact with other people, and hopefully grow past that stage.
But adults judging little kids? NOW we’ve got a problem.
Bring that behavior here, and I’m just crazy enough to start quoting Shakespeare: “Then will he strip his sleeve and show his scars, and say `These wounds I had on Crispian’s day’…We few, we happy few, we band of brothers (and sisters!), for he who sheds his blood with me shall be my brother.”
You see, no matter what snap judgement you may make of that kid with the scar, we see ourselves as survivors. And no matter what you may think, we weigh out correctly and we measure up.
And this is the story that a good man will teach his son.
From StorytellERdoc:
It happened again last week. Among the hustle and bustle of a crazy shift. A pre-hospital radio call from an ambulance team that nobody ever wants to receive.
“We’re bringing you a child in cardiac arrest.”
Heart Moms (and mothers of all Sick Kids) go to the wall for their children. Not occasionally, not when needed, but constantly. Traditionally, we’re supposed to grow up, move out, have our own family, and then take care of our parents as they age.
But for some of us, that won’t happen. So our mom may spend her entire lifetime in “Mom Mode”. When the child has a disability, moms are instinctively more protective and worry more. Their children’s lives may not be what they imagined or hoped for, but good moms adapt and hang in there.
Then, time stood still. From two hallways away, I heard the haunting sound. A sound that I knew was coming. A sound that is played over and over in my mind for days after an event like this. A sound of profound anguish. A sound of utter disbelief. A sound of infinite pain.
A mother’s cry.
All our mothers live in fear of their worst nightmare: The thought that they might have to bury their child. With sick kids, that fear is with her every day. 99% of the time when morning comes and the child is late in getting up it’s just that the young’n didn’t set his/her alarm… again. But when a Sick Kid’s mom opens the bedroom door, her breath catches in her throat. What if…?
When the doctor comes out of surgery, what if…?
No mother should ever have to bury their child. It’s unacceptable, it’s unnatural, and it just ain’t right. But some mothers do, and others live in constant fear of that sad event. And yet you hang in there, and you stand by your child – forever.
Thank you.
I received an email from a Heart Mom who is looking for information on the One and a Half Ventricular Repair. This is the surgical option being considered for this Mom’s daughter and she can find very little information on it, so she’s looking for someone who has had the operation, or the parent of a child who has had it.
I don’t know anyone with a 1 and 1/2 repair that I can recall, so I’m asking Funky Heart! readers: If you would be willing to discuss the operation and long term results with this mother, drop mt a note or leave a comment here. I’ll put you in touch with her.
Much thanks;
Once a Heart Mom, always a Heart Mom.
Even after your Cardiac Kid survives that first surgery (or surgeries), stabilizes, and seems to be doing well, the Heart Mom gene never turns off. It goes into “Standby Mode” – not completely deactivated, but just below the surface. Your senses will always be heightened, always aware of any change in your child’s condition.
The doctors at Johns Hopkins Hospital had told my parents that if I had any more problems caused by my heart, they would most likely happen in about ten years. Their prediction was almost perfect – I stated having trouble 10 years and one week after my first surgery.
I was 11 years old and in the 5th grade at school, on a cold February day. I was sitting with my back to the wall of the school (I had learned that the wall faced the sun so no matter the temperature, it would be warm!) drawing with my best friend. Neither one of us could draw a straight line – I still can’t – but we were certainly trying!
My stomach had been doing flip-flops all morning. I didn’t feel bad, other than my stomach. But something was really giving it a fit – finally it came to the point that I turned my head, leaned over and puked.
It was all blood.
My friend said that I might need to go to the office (Yeah! I think so, too!) so I did. They called the local Rescue Squad, then called my mom.
The volunteer Rescue Squad building was only 2 miles away, but the members were spread out all over my hometown. They were pretty quick; just a year or two earlier they had won an award for being the best small Rescue Squad unit in the state, but they were still all volunteer. Once you dialed the emergency number – and this was 1977, before 9-1-1 was in use – whomever was on duty had to take the information and then press the big red button on the radio. That caused all the beepers carried by Rescue Squad members to go off. They would then leave their jobs and hurry to the Rescue Squad building, get the ambulance, and speed off. It was usually ten to fifteen minutes from the time you placed the call until you first heard the ambulance siren.
My mom got the call at work, twenty-five miles away. Suddenly her Heart Mom gene flipped to ON and she barely remembers what happened next.
What happened was she ran to the car – an older AMC Ambassador – and put her foot on the floor. Pedal to the metal with the engine screaming, the best cars and drivers that NASCAR has to offer could not have beat momma that day. She drove that AMC Ambassador twenty five miles in a little more than twenty minutes, arriving just behind the ambulance. The ambulance parked in the parking spot nearest the door, but momma skidded to a stop with two wheels on the sidewalk!
Daddy hadn’t arrived yet when I left in the ambulance, but momma was going with me and there was no question about it. She jumped into the ambulance as they loaded me in, and soon we were moving. The last view I had before they shut the doors was of our car, still sitting there with two wheels on the sidewalk.
How are they going to load the buses? When you are 11 years old these questions are important.
That ambulance ride ended at our community hospital, but my journey would continue to a larger hospital and from there to the University of Alabama at Birmingham for my second heart operation. Mom and Dad were there every step of the way. I’m doing well now, and Momma’s Heart Mom instincts usually don’t come into play. I can still set them off – just let me forget to set my alarm clock and not get up at my usual time!
Once you are a Heart Mom, you’ll always be a Heart Mom. No matter how old your Cardiac Kid (or Heart Warrior) is!
Zeb is doing better! The chest tube has been removed and the doctors are making noises about his coming home in a day or two! It can’t happen too soon, because the young man is scooping up all of the attention! His nurses are crazy about the little guy!
But we have a problem – Zeb doesn’t want to take his medication! That’s not good at all – some think that after being in pain a few nights ago, he now believes that the medication actually causes the pain… whenever it is time for meds, Zeb turns into a clam. Nuttin’ is getting past those lips, no way, no how!
Hopefully he will realize that his medication is a very important part of getting well and he’ll be on his way back home soon.
“You got how much snow?” I asked.
“About four inches,” my father said. My flight had left South Carolina about 9:00 AM Friday morning; and the snow had begun to fall about 4:00 PM. I called home Saturday morning like I usually do, and my father had told me about the unusual snowfall.
In just a few hours I was scheduled to speak to the members of the Broken Hearts of the Big Bend, and I planned to speak about my first heart operation. And now my dad is telling me about snow on the ground back home.
Deja vu all over again, as Yogi Berra might say. I was getting ready to talk about how my parents drove from South Carolina to Baltimore, fought through the worst snowstorm in recent memory (Baltimore’s 24 hour snowfall total that night has been topped twice since then) to get me to Johns Hopkins Hospital for my first heart surgery. And my father is talking about snow on the ground. If there was ever a sign that I needed to say what I had planned, this was it.
My dad is a retired textile chemist who has worked in cotton mills and fabric manufacturers all his life. He occasionally calls himself a linthead, an old term left over from the days when cotton mills peppered the South Carolina landscape. My mom also worked in textiles, usually on the retail end. But on one night in early 1967 these two Southerners went above and beyond the call and in the process became Heart Parents.
I won’t tell the story again; I posted the text of my presentation and also a video of my speech earlier. My audience was made up of Heart Parents, most of them young, just like my dad and mom were. They have the advantage of having the internet, overwhelming amounts of information, support groups, and instant communication. My parents were on their own and knew no one else who had ever been through anything like this.
You need a special kind of strength to dig your heels in and fight against Heart Defects. Two lintheads from the cotton mills found theirs on the road to Baltimore… and that same strength is in you.
Adventures of a Funky Heart! 