Friday, August 6, 2010

Constipation

Well, this week found us in-patient at Children's Hospital for the first time in almost 2 years. We were there for 4 days, and we came home last evening. This time, however, it wasn't heart related. It was poop related. (Fair warning: if you don't want to know more about poopy issues, quit reading now while you're ahead.)

Gabby has always tended towards constipation. She's been on MiraLax for a long time. However, over the past couple of months, she's tended to have a bigger belly than usual. What was happening was she had an old partial poop plug in there, and liquid poop was going around it. I've had her to the doctor more than once for this problem. Each time we'd up her medication or add something new. We recently added enemas to what we were doing as needed.

This last Sun. night, I gave her an enema because what we were getting was more liquid with flakes in it. I'd been getting darker liquid with pieces in it. (Leave it to a nurse to actually look at what's in the Pull-Up!) She really resisted, but with the help of a friend, we got it done. A little while afterward, Gabby started really hurting. She was in so much pain, she was lying on the kitchen floor with an ice pack on her tummy crying. I called the doctor's office, and they told me to take her to the ER. So . . . after my friend got here, off to Children's we went.

They did an abdominal x-ray, and they examined her. She was really distended and uncomfortable. I gave them the whole history & answered their questions. They decided to admit her for a "GoLytely clean-out." This entails putting an NG tube through her nose and into her stomach and giving her GoLytely through that. GoLytely is like super strength MiraLax, and it's what you have to drink before having intestinal surgery or a colonoscopy. She needed so much that there was no way she could drink it all. They also gave her enemas on top of it. Plus she got IV fluids since she had absolutely no appetite during all of this.

In the end, she got something like 2 1/4 gallons of the stuff pumped into her and a total of 3 enemas. For a couple of days of her hospitalization, we were having problems with vomiting as well. They'd turn off the GoLytely for awhile until her stomach settled down. It also meant that it was hard for her to start eating again. They wouldn't let her go until she could keep clear fluids and soft foods down.

So here we are the afternoon after discharge. She has an appetite again. She's active. Her tummy is softer than it's been in some while. She seems happier and more comfortable. (Wouldn't you be?) Yes, I'll make it a point to get more fiber in her diet and get her medications into her, which she's pretty good at taking. She has a visit with a specialty clinic in about 10 days for regular follow-up and a follow-up visit at her pediatrician's office on Monday. Also on Monday, she has her annual check-up with her cardiologist. Watch for visit results here.

Many thanks to my friend, Lisa, who minded Sarah through all of this. She's the one who helped give Gabby the enemas when I asked, and when we had to go to the hospital, she was right here and made sure Sarah was cared for while I was with Gabby. She also made sure Sarah made it to the hospital every day to see us. I couldn't have done it without her help.

Saturday, March 13, 2010

Shaun White

Olympic Fever is over for the next 2 years. But there's something that I still need to say.

As many people know, Shaun White is the USA's halfpipe snowboarder who won the gold medal this year and in the 2006 Olympics as well. He's a young athlete, seems the picture of health. Yet what not everybody knows is that he was born with the same heart defect Gabby has, tetralogy of Fallot. He had 2 open heart surgeries before he was a year old. While he doesn't deny that he was born with this defect, he does state that he "had" a heart defect.

I spoke with Gabby's cardiologist about this a couple of years ago. I was impressed because I realized that much more was possible than I had realized. He stated that, while it was possible, there are some things that will always have to be followed by a cardiologist. So, is Shaun getting regular cardiac checks? If so, why isn't he more upfront about the medical monitoring that is necessary to be an athlete of his caliber with his heart history? A part of me wants to think that the team docs aren't letting him compete without additional medical clearance. Yet, I also know that many young adults with a CHD history are lost to follow-up. Once you have the surgery, you aren't "fixed for life." Nobody knows for sure how your heart will react several years down the line and after the heart changes with growth and increase in body size. CHD patients require good follow-up for life.

So here's my issue: Is Shaun White getting good, regular cardiology follow-ups? And if so, why does he not speak more about being a CHD survivor? He has shown us what CAN be done with a CHD history. I just wish he'd use his fame to educate the public more about the medical care that is necessary to do what he does.

Tuesday, January 5, 2010

Happy Heart Anniversary

Today is the 4-year anniversary of Gabby's open heart surgery! Wow! The time has just flown by. It marks the day that they fixed her heart, but we almost lost her. ECMO was terrifying. But we got through it as a family, and it made us stronger.

Gabby is doing very well. As I mentioned in a previous posting, she gets to go an entire year between cardiology visits. She has good energy. In fact, at times it seems like she's constantly moving. She's smart, loving, and she can have quite the temper at times. She can also be pretty sneaky when she wants to be. In other words, a pretty normal kid except for the scars. At least that's how we try to treat her.

She still has problems with her gross motor milestones. I mean, she can walk and run, and she can jump now, but she's not where other 4 year-olds are. That's why she gets weekly physical therapy through the school district. She's also still really short. She's still just below the 3rd percentile for height. However, she comes by it honestly considering that most of the folks on both sides of her family aren't terribly tall.

It's a feeling of accomplishment to have a child (and family) who have been through what she went through (and we went through together) and come out the other side doing as well as we are. According to her cardiologist, she's an ECMO superstar. That's some of the best news I've ever had. It shows that a child can go through all that she did and do well. Her outcome is exactly what the doctors and nurses who work with these types of problems strive for. While we have more surgery ahead of us during "late childhood" (age 7 to 10), we've been through the worst of it. We hope. If you know a family with a child with a CHD, let them know that it really CAN turn out ok on the other side of the surgery.