Upcoming heart cath

Wow. It's been a long time since I posted here.

We saw Dr. Lewin over the summer. He is concerned about the stent in her left pulmonary artery causing reduced blood flow to her left lung. Rather than exposing her to the radiation involved in a lung perfusion scan, it's time for another heart cath. They are going to try to "fracture" the stent so it can be opened more and allow normal blood flow to her left lung. It will also be used to get a more accurate picture of the flow and pressures in her heart. If the attempt to fracture the stent fails, then it will need to be removed surgically. Not immediately, but it will need to be done. Not my favorite thing in the world, I can assure you. Or Gabby's for that matter.

Cath is scheduled for tomorrow, 9/28 at 10:30 am.

Cardiology Visit and more poop

Wow. I can't believe it's been a year since I last posted here. My how time flies! Much has happened in the last year. The big deal is that I bought a house and we moved about 2 miles from where we were before. The other big deal is that Gabby starts kindergarten this fall. And we still have a few medical issues to contend with, but nothing nearly as tough as what we've been through.

Today we had her first heart check in a year. She's been pretty stable from that standpoint, which is why I haven't written anything about it in so long. Going a year between cardiology visits has been nice. But recently I've noticed that she's been more tired in the evening, or she's complained more of fatigue after we've been walking some. Of course I mentioned this to Dr. Lewin today. Her echocardiogram doesn't show any alarming changes at this point. Blood flow velocity through the stent in the artery going to her left lung looks good. Her right ventricle is working fine right now. Her murmur is the same. He understandably doesn't want to do anything invasive or expose her to any additional radiation unless it is absolutely necessary. So here's the bottom line: we go back in 6 to 9 months instead of a year. We'll see how tired she gets going to full day kindergarten and whether or not she adapts well to it and go from there. She'll still need that stent dealt with at some point down the line, and at some point she'll need a pulmonary valve placed. And cardiology visits will be a part of her life for as long as she lives, which should be a good long time.

Then there's the ever-present issue of Gabby's poop or lack thereof. So I did take her to the special clinic last year. Due to insurance issues, I didn't take her back for some while. Unfortunately, I backed too far off of her poop medicine, and she never got potty trained. When we had the x-ray done for that clinic visit, it turned out that she was impacted, and I didn't even know it. So, with their guidance, I started giving her lots of different stuff to get her to go and get her cleaned out. Our last visit showed that there is still some impaction left, but there's less there than there was before. That added even more poop medicine to our daily regime. The really good thing here is that since we've upped the meds, she has started to poop on the potty! Woo hoo! She sits to pee, and she poops at the same time. I don't think she's had poop in her Pull-Up for awhile now, which is really good. There is light at the end of the tunnel.

I promise, next entry will be more about life and the new house and such.

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.

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.

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.

Disneyland Birthday!

Gabby turned 4 on 11/1. So, this year, instead of having a party here, I decided to take them to Disneyland for Gabby's birthday. She got in for free that day, and we were able to stay with Jack's neice, Nova, and sister, Toni, thereby avoiding hotel and car rental costs. It was their first airplane trip, too!

I managed to keep the trip a secret from both girls. Of course, their teachers knew, and I arranged for our neighbor to look after Clem the Cat. They didn't even know that we were going on a plane trip until about an hour before the shuttle came to take us to the airport when I picked Sarah up from school.

I finally told them the day after we got there (Halloween) that we were going to Disneyland the next day for Gabby's birthday. There was, of course, much excitement. Both girls had wanted to go to Disneyland for some while. Jack's sister, Toni, had previously worked there, and she came along and really helped make it a great experience. Also, Jack's neice, Nova, met up with us there, and she added to the fun as well. It was so much easier to do Disneyland with 3 adults and 2 kids as opposed to 1 adult and 2 kids!

They both dressed up as their favorite Disney Princesses for Halloween. Sarah dressed as Belle and Gabby dressed as Aurora. We went trick-or-treating in Nova's neighborhood. Gabby got so much candy that she wound up dragging her treat sack. When unsuspecting adults would hold out the bowl of goodies, she'd grab as much as her little hand would hold. I almost fell over when I realized how much sugar she'd gotten away with. Of course, I had them wear their Princess outfits to Disneyland. We couldn't do it any other way!

The day before we went to Disneyland, Toni helped the girls make very special memory books for the day. They got to choose which paper they wanted for the cover. Toni printed out stickers of a bunch of Disney characters. Then a sticker for each character was put on each page so the characters had their own special page to sign. It was much more special than a store bought memory book, and the characters were very pleased that they had their own page. It added to the magic of the day.

The day at Disneyland was magical. Gabby got a special button saying that it was her birthday. The rest of us got buttons that said, "I'm celebrating!" Every time we turned around, someone was saying, "Happy birthday, Princess!" It was pretty cool.

Gabby doing the Happy Dance

After we got into the park, stashed some stuff in a locker, and rented a Disneyland stroller, we rode the train so we could meet the Princesses. The train ride was fun, and I especially liked how they constantly reminded parents to watch their kids. They even had signs reminding us.

The train ride

Meeting the Princesses was one of the best stops we made. Sarah was dressed as Belle, and Gabby was dressed as Aurora (AKA Sleeping Beauty). The first Princess we met was Ariel, also a favorite of both girls. She was so sweet with them.

Waiting to meet the Princesses

Next in line was Aurora. She immediately asked Gabby if she'd been in her closet since they were dressed pretty much the same. Aurora showed them how to twirl in their dresses, which was a lot of fun.

Then, much to our surprise, Belle stepped up. It was amazing to get a picture of both girls dressed as their favorite Princess with those Princesses. This is something that just doesn't happen. It was as if it was planned that way and utterly magical.

The last Princess we met was Mulan who was very nice.


Then it was off to meet Mickey and Minnie. We met Minnie first and went through her house, then we met Mickey on the set of one of his movies. Gabby didn't like the darkened theater we waited in much, but she had a good time meeting Mickey.





Next it was off to do a ride or 2. We rode on the Dumbo ride. Gabby and me in one, Toni and Sarah in another. Nova passed so she could take pictures. Then we did the carousel. Then we went through Aurora's castle.





From there, we went to Pixie Hollow. The girls got sprinkled with pixie dust on our way there. The first fairy we met was Fawn. Fawn is the one who talks to animals. Sarah has a Fawn doll hanging above her bed, and she helps take away bad dreams. Of course, Sarah had to tell Fawn this, and Fawn was quite impressed.


Then, of course, we met Tinker Bell. Tink is one of Gabby's favorite characters. A few days before our trip (when she had no idea we were going), on the way to preschool one morning, Gabby said, "When we go to Disneyland, I'm going to meet Tinker Bell, and when I do, I'm going to run up to her and give her a hug." And that is exactly what she did. One of her souvenirs is a baby Tinker Bell doll that she just loves.


Toni had generously decided to make reservations for Pat-A-Cake, which is a Disneyland birthday party of sorts. Everybody gets their own little cake to decorate. Mickey and Minnie are there, and the birthday kids each get their picture taken with the Mouses. It was fun. I think Gabby wore more frosting than she ate, though.


Of course, we had to do more rides. We rode Pirates of the Caribbean, Nemo, Pooh, and Autopia. Autopia was a blast. I let Gabby "drive" while I did the pedal. We'd hit the middle track, and she'd laugh her maniacal laugh, then we'd hit in the other direction, and she'd crack up some more. I don't think I stopped laughing that entire ride. Toni was in the car behind us, and she could hear Gabby laughing!

We ended the day with fireworks and some souvenir shopping. We were walking out of the park at 11:50 at night. We'd spent something like 14 hours there. We were all exhausted. And it was so worth it.

Gabby & Nova waiting for fireworks

(More images available on Facebook)

Fishies!

It's been awhile since I last posted. Sorry about that.

After we got back from our CA vacation, I kept my promise to Gabby and Sarah, and I got a fish tank. Rather than borrow one, I went and bought a 10 gallon starter kit at the local pet store. It came with most of the stuff I needed to get started, including fish food. However, it didn't include gravel, plants, test strips, or the actual fish. After setting it up, I let the water "settle" for a couple of days. Then we went and got our first fish. We've added them slowly to the tank, no more than 3 at a time every week. We are now at full capacity.

We now have a total of 10 fish in this tank: 3 zebra danios, 3 neon tetras, 2 black mollies, and 2 sucker fish. The sucker fish like to hide, and it can be a challenge to find them sometimes. They like to eat the algae. I call them Fang 1 and Fang 2. They aren't very pretty, but I guess every tank needs a bottom feeder or 2. The neon tetras are like the airheaded blonds of the tank. They're really pretty, but they seem to confuse easily. (They're either blonds or hippies.) They like to just hang out, eat when it comes, and be the cool pretty fish that they are. The zebra danios are the first fish that we got. While they are zebra striped, they also are kind of shimmery in the right light. They like to chase each other around the tank. Really fast. The black mollies are the large black fish. One of ours has a little white on the bottom of its head, so I call it Whitebeard. They like to eat the algea tablets that are meant for the sucker fish. We recently lost one of the black mollies (don't know why), and when it was sick, the other one nudged it like I've seen cats or dogs do. I've also noticed that there isn't much inter-species mingling going on.

So, Sarah decided that she wanted goldfish to call her own. So we have a second goldfish tank. It is very princess. She has named them Yellowie-Goldie and Reddy-Orangie. Hey, I just report the names. They seem to be doing well. They get fed once a day. That tank is in a different spot than the other one.

We all like to watch the fishies. I'll even stop to watch them sometimes. There's something relaxing and soothing about it.