Cardiology Update--Spring 2018

Apparently, I'm not so good at updating these days. I think that means, physically, Izzy has remained fairly stable over the last five months since I updated. She has not had many doctors' appointments and she has not had any major illnesses. She has been physically stable. That is a good thing.

Please don't get me wrong and believe that Izzy feels good. She is still in pain regularly. She still sleeps 12 hours a night on average. She gets tired easily. She eats very little. She is 10 and weighs 46.6 pounds and is 46.5 inches tall--a pound an inch. Izzy has stomach aches pretty much daily. Her head hurts (especially if she doesn't wear her oxygen). She still gets very swollen in the abdomen. In fact, it has been getting worse lately, especially at night. Izzy can't drive far without nausea and pain. But, we've learned to work with her and help her make positive choices so that she can make the most of every day. She is not worse. That is good.

Of course, I'm remembering to update today because we had Izzy's 6 month follow up with the cardiologist today. I got a glimpse of how great stability is with Izzy by the excitement the cardiologist got when she realized Izzy had turned 10 a couple of weeks ago. She was beaming at the thought of Izzy being 10. The fact that Izzy is stable too is great.

The cardiologist decided that Izzy's echocardiograms don't really tell us much recently, so we will wait to take one at a later date. I've been thinking this for a long time, so I'm glad the cardiologist was in agreement. Izzy was glad too. She hates echos (it hurts a lot when they press on her tummy and is very uncomfortable when they look at the arteries/heart from the neck). Today was just a physical exam, discussing current symptoms, listening, and checking in.

For the first time, we left an appointment where the cardiologist didn't want to send Izzy to another specialist to find out why she's having symptoms. Instead, the cardiologist admitted that she wished she had a magic pill for Izzy and then tweaked some things to try and lessen symptoms. I think hearing the doctor wish for a magic pill may have helped Izzy because it is something Izzy wishes for all of the time. It's nice to not be alone.

For now, Izzy's pills and liquid medications will remain the same. We are altering Izzy's oxygen therapy though. Izzy currently wears 2L of oxygen all day, every day. Izzy has learned when she doesn't wear her oxygen, she feels miserable all over. So, the cardiologist wants Izzy to wear 2L when she is out and about and moving during the day, but when she gets home from school and through the night, wear 3L of oxygen to see if the extra support helps to lessen Izzy's symptoms and evening swelling. Izzy is not happy about that. She doesn't like the way the oxygen blows when it is at 3L, but I'm hopeful she'll get used to it like she has with everything else. When we added night oxygen back many, many years ago now, it helped tremendously. Izzy suddenly seemed rested rather than having ran marathon each night. I'm not naive enough to think upping oxygen again will have a similar magical effect, but it would be nice if her belly didn't get so swollen at night that it hurt more than normal.

There was also talk of trying to find compression socks for Izzy to try and control the venus pressure. The cardiologist was going to talk to her nurse about trying to find some small enough for Izzy. They will also have to be fun enough as Izzy only wears fun socks that don't match. It's part of her signature style. We shall see what the team comes up with. I tried finding some online today and there are none in size children's small. We were told they'd have to be made special for Izzy, so we will see how that works and whether that is a change Izzy is willing to make.

Izzy sees her gastroenterologist tomorrow. He's likely to be happy with her as he always is (he decided years ago that most of Izzy's stomach pain is caused by low cardiac output). Other than that, as I said, Izzy has been physically stable.

I can't say the same for Izzy's mental and emotional health. In that area, we have continued the roller coaster that is our life. Izzy is great, happy, smiley one minute and sad, ornery, and miserable the next. Turning 10 has been incredibly hard. She feels so many complex emotions and wants so much, but she knows she has been limited. There are so many things we used to do that just don't happen any longer. Even harder, the older Izzy gets, the more she realizes that she misses out on. Where we used to be able to hide the fact that she was missing out, Izzy knows now.

As Izzy is outgrown in many, many ways by her peers, Izzy gets angrier and combative, thus separating herself even more from her peers (because who wants to hang out with an attitude) and she is lonelier and lonelier. She knows intellectually that she needs to be kind, but she gets so angry at what she is not that she cannot appreciate what she is. We fight this constant battle. These days, we seem to lose to the child deadset on hating everyone and everything because she doesn't look like, act like, or fit in the world she imagines everyone else lives in.

I'm sure this is akin to what most pre-teen parents deal with. Phin dealt with many of these issues. Izzy is always more intense than he was. But Izzy's strength and dogged determination (that benefit her in so many ways) also make getting through to her difficult. It doesn't matter what we say or do, she doesn't seem to believe us when we tell her the world is what you make of it or that to have a friend, you need to be a friend. She won't believe that she deserves to be treated with kindness by herself, let alone that she should bother to be a friend because she feels unworthy. She is her own worst critic and enemy. All of this makes each day so very hard to get through.

Don't worry. Izzy gets counseling, sees a psychiatrist, and we are attending to her mental and emotional well-being as best we can, but it is not easy by any stretch of the imagination.  When you add pre-teen angst with life-threatening illness, oxygen canula, wheelchair, and smaller than everyone else, there are a lot of issues to attend to. Throw in 22q deletion syndrome, which is not known for leaving its victims mentally stable, and the emotional roller coaster is intense.

Mixed in with all of that though, we did have some really fantastic moments over the last couple of months.

Izzy got new glasses. Boy, did she need them!

This was taken when we saw "Coco", but she also saw "The Last Jedi". BTW, "Coco" is a favorite of Izzy's.

Izzy got to sing with other 4th and 5th graders at a school function.

I don't remember where they were going, but they were sure cute!

There was fun in the snow.

Hot cocoa HAD to follow snow fun.

Izzy is wearing the McKenzie tartan for the International Fashion Show at school

Holiday parties and the best giant stuffed bear ever from one of Izzy's best friends.

Ma came to school!!!

Izzy and her other grandma :)

Izzy and grandpa.

Christmas cookie!

One of Izzy's favorite Christmas presents--the universe she can hold in her hands (really a glass sphere with the solar system in it). Izzy likes to imagine that she can control the universe when she holds it.

Izzy showing off new clothes and slippers.

Izzy had so much fun at the water park over Christmas break she decided to go back for her birthday.

Chrystal art Izzy made to sell on trading day at school.

Looking way TOO grown up!

Valentine's Day party at school.

Showing the Nefertitti costume she got for Valentine's Day.

Izzy was the belle of Michigan's First Sweet Hearts Ball.

Phineas was the most handsome of young men.

Izzy with her pictures at the Ball.

These kids danced the night away.

Super Hero Dance at School!

Celebrating Izzy's 10th Birthday at school!

Check out the amazing surprise Izzy got at school from the local police department and her entire school. It made her day complete since she was not excited about turning 10.

The birthday celebration continued at a local water park hotel (we stayed close so Izzy didn't get sick on the drive).

Water park!

Peter Pan is a favorite of Izzy's these days because she does not want to grow up.

Water park!

This is 10!

Phin's Boy Scout Troop held a fundraiser for The Children's Heart Foundation.

Eating ice cream of course!

From Easter morning :)

Izzy's other favorite movie these days is "The Greatest Showman", so she needed a ring master costume. She got it yesterday and wore it for the entire day.

 

Thank you for checking in on our girl. If you'd like to support Izzy in her efforts to raise money for The Children's Heart Foundation-MIchigan Chapter and congenital heart defect ("CHD") research, please join us in Izzy's Ice Cream Challenge this year. We have moved it to spring to coincide with Izzy's birthday and so that Izzy's Ice Cream Social, where you get to eat ice cream with Izzy, is now Saturday, June 2, before vacation season.

Take the pledge today to think of Izzy and all of the kids (and adults) who were born with CHDs each time you eat ice cream this spring. Then donate a quarter, a dollar, ten dollars for each frozen treat. Keep a jar in your kitchen or keep a tally (ice cream stickers are a fun way to track). Izzy's Ice Cream Challenge officially runs this year from Izzy's birthday on Saturday, March 17th through Saturday, June 2, 2018.

The event culminates at Izzy's Ice Cream Social & Family Fun Day on Saturday, June 2, 2018, at Grant Park in Utica. You can bring your money to the social or mail it The Children's Heart Foundation-Michigan Chapter, PO Box 1808, Troy, MI 48099 by that day, or donate at this link http://weblink.donorperfect.com/Izzysicecreamsocial2018. For every $30 raised, you will receive an "I ate ice cream for Izzy! Funding CHD research 2018" cloth bracelet. Tickets for the Ice Cream Social & Family Fun Day can be bought online at the same link: http://weblink.donorperfect.com/Izzysicecreamsocial2018. Please join us! It is one of Izzy's very favorite days of the year. You get ice cream, you get wonderful kid games with lots of prizes, and you make Izzy smile from ear to ear. She loves when people come. 

Mel