Posts Tagged ‘Children’

Kids are tough!

November 23, 2010

Kids are tough. They just take whatever life hands out and keep on keepin’ on. When I was at the University of Alabama at Birmingham (UAB) in 1977 for my second heart surgery, I met not one, but two perfect examples.

UAB had a playroom near my room, and it was the perfect destination. The “Adult” waiting room was right across the hall, so the folks would walk down there whenever the hospital room began to make them crazy. I’d go along too. I was 10/almost 11, and even though I was one of the older kids I could hang out and break up the boredom. Patients get a little bit crazy, too, you see. One of my first times down there I was trying to talk to one of the other kids – who wanted nothing to do with me – when this other little fellow ran up and asked “Mister – ”

What’s with this “Mister? I thought.

“Mister, can you fix this for me?” I had no idea but I took a look at the toy he offered. Turned out to be nothing; someone had put the battery in backwards but he was too young to figure that out. Thirty seconds later the toy was running and I was popular! I could fix things, and that was an important skill to have.

A couple of days later I was in the playroom and in walked a Mother we had met. Her child had an unexplained illness and no one had figured out what it was yet. Billy (I can’t remember many names from that trip to UAB, I guess too much time has gone by. So we’re going to call this young man Billy) was feeling better, would we mind if he came down to the playroom?

Certainly! Everyone needs to get away from the hospital bed every now and again, bring him on down! She left, and in a few moments she was back with Billy.

Billy was up and moving around but he was connected to an IV pole. That’s an common sight, but the needle led to a tape covered area of his head. Holy Mackerel, this kid has an IV in his skull, but it didn’t seem to bother him much. The biggest problem was when he was playing and got too far away from the IV. His line would go taut and pull him back, and Billy would have remember to pull the IV pole along with him. If that had been me, I’d have thrown screaming fits whenever someone mentioned the words “IV” and “head” in the same breath. Holy Cow, kids are tough.

Another person I met was Phil (another made-up name, I hate to say). Phil was a six-year-old with a growth on his spine and was scheduled for back surgery about the time I was having my heart surgery. By the time I saw Phil again, the playroom was off-limits (possibility of too many germs) but it was still a destination. That first week of recovery I’d walk from my new room to the playroom, turn around, and head back to my room.

I was just starting back towards my room when Phil came into my view, riding a Big Wheel. He was having fun, tried to pull a wheelie… and went over, landing flat on his back. Right on his incision!

Youch! His mom came running over, yanked him to his feet, and snatched his shirt up. I expected the worst, but his incision looked just as healthy as mine. Not only was he not hurt, but Phil wasn’t paying mom any attention. He was looking to get back on his Big Wheel and try again! Unfortunately (or thankfully!) Phil’s racing career was over, per order of his mother.

Kids are tough… it’s the adults who can’t take it!

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Welcome to the club

June 4, 2010

I read a lot of medical blogs every day looking for information to pass along to Funky Heart! readers, and when I found  StorytellERdoc he quickly became one of my favorites. There is no doubt about it, the doc can write. Today’s entry deals with children who have a Chronic Illness and their parents. StorytellERdoc has been there himself:

One of our amazing ER nurses, Kathy, the mother of a son with cystic fibrosis, said it best when Cole was first diagnosed. “Welcome to the ‘Parents-Of-A-Sick-Child Club’,” she whispered in my ear while hugging me. “It’s a club that no parent would ever want to belong to,” she continued, “but one that will change your life forever.”

No doubt about that. You wanted the 2 kids and a picket fence that is the dream of every parent. What you got was a full-scale war. You’ll have to learn skills that have absolutely nothing to do with your chosen career, take a crash course in Medicine, learn a foreign language (yes, “Doctor-talk” is a foreign language!) and unless you are lucky enough to live close to a major medical facility, you’ll have to become your own travel agent. But somehow you manage to dig your heels in and push back; you fight for what is yours and you hold on. That’s all you can do.

In the ER, when I meet the parents of an ill child, especially a prolonged, chronic illness, my utmost respect and compassion flows outward in tidal waves. I can only imagine the heartbreak and the struggles they have known in dealing with the fight for their child’s life, trying to obtain just a wee bit of normalcy.

It is a war that won’t be covered on the evening news, and can barely be put into words. Only a chosen few – members of The Club – understand. StorytellERdoc is a member of the club. Go, and read his account of one family’s  battle.

Pump up the ventricle!

March 12, 2010

I’ve received a press release from my friends at the Broken Hearts of the Big Bend concerning new heart pumps – better known as Ventricular Assist Devices (VADs) – being developed at the University of Maryland School of Medicine. These VADs are pretty special – they are just the right size for children! (Make sure that you page down to the bottom of the page and see just how small these devices really are!)

The National Heart, Lung, and Blood Institute (NHLBI) has signed a contract with Maryland to begin preclinical testing of the new devices. Preclinical testing occurs before the new instrument is ever used – it’s a test of systems and a safety study. And you may know one of the VAD developers: Dr. Robert Jarvick, who invented the Jarvick-7 artificial heart.

Ventricular Assist Devices (usually attached to the Left Ventricle and sometimes called LVADs) are small, self-contained pumps that can be surgically attached to a heart and help it pump blood. With the workload reduced, a weak heart can function longer and increase the odds of lasting until a heart transplant becomes available. Under the right circumstances the heart can rest and regain some function.

Swine Flu Update: October 10

October 9, 2009

The H1N1 Swine Flu Vaccine is starting to be distributed nationwide, and just in time, it seems. Pregnant women have been hit especially hard by this bug and they are one of the priority groups that the Centers for Disease Control (CDC) recommends receive the vaccine as soon as possible. Children are also being hit hard – 19 have died this week.

Do you have the Swine Flu? Microsoft and Emory University have teamed up to create an online Flu Quiz – answer a series of questions, and your computer will compare your answers to a list of known symptoms and then inform you of the possibility that you have the flu. I answered the questions last night and the computerized doctor told me I was OK! But if someone in your home does have the Flu, here is the CDC’s informational guide for taking care of them while hopefully avoiding catching it yourself.  (If you live with someone who has the Flu and you are in a high risk group, you need to stay six feet away from the patient. Sounds like a good time to hire a Home Health Nurse.)

There have been questions raised about the safety of the vaccine, and here is the CDC’s web page addressing those issues. Also, there has been no link shown between vaccine and Autism. There was a research report from England published 10 years ago that seemingly linked the Mumps, Measles, and Rubella (MMR) vaccine with increased occurrences of Autism; but further research call those results into question. Most of the authors of that original research have since said that their research didn’t seem to hold up.

I can’t speak for anyone else, but I have taken the vaccinations that have been recommended to me over the years, and there have been no side effects other than occasional soreness at the injection site. And with my heart defect, I feel that I would have been more suceptable to any adverse reaction.

On the Street Where You Live

November 6, 2008

This past week I’ve spoken a lot about Katie, sometimes I wonder if I’ve said a little too much. I’ve been asked, both online and in real life, if maybe I’m paying just a little too much attention? It’s not really a surprise, as I thought about it myself.

I’ve never met Katie or her parents. All I have learned about them, I’ve read on their website. It’s been a hard thing to try to follow the recent news about her, because it hits so close to home. Katie is five months old – the same age I was when I had my first heart surgery.  She’s had the Bi-Directional Glenn; I’ve had the original version of that operation. Katie is at Yale New Haven Hospital, where Dr. William Glenn himself lived and worked. I’ve read that Dr. Glenn, despite being a world famous heart surgeon, would leave his home on Saturday mornings and walk to Yale’s football field to cheer on the home team. He sounds like my kinda guy.

Katie has Hypoplastic Left Heart Syndrome (HLHS). I have Tricuspid Atresia, which is occasionally referred to as one of the defects that make up Hypoplastic RIGHT Heart Syndrome. (HRHS) The term HRHS wasn’t even invented when I was born (I don’t think anyone had thought of HLHS, either) so I’ve always just referred to myself as having Tricuspid Atresia. But when you think about it, Katie’s heart and mine are nearly mirror images of each other.

Spooky. As the title of this post notes, it hits you on the street where you live.

After my surgery at Johns Hopkins in 1967, one of the doctors mentioned in passing that we were one of only two families who had made it in that night. The other child had been born premature, and despite being healthy in every other respect, hadn’t made it. The doctor shook his head. “Some children…they just aren’t fighters.”

There’s no doubt about it, little Katie is a fighter. She’s hanging on for all she’s worth, clawing and spitting and digging her nails in. Keep fighting, Katie! I’m pulling for you!