Decline

I'm not sure where to begin or what to update at this point. Our world has been turned upside down since Izzy was released from the hospital back in April--everything is completely different, yet eerily the same. I don't know what has happened or why life sucks quite so much, but something has happened and life does suck sometimes.

First of all, I guess I should mention that Izzy's cardiologist did talk to the electrophysiologist. They decided not to treat Izzy's arrhythmias. The cardiologist actually called me when I was sitting in the ER with Izzy back in April, but I never updated because I was busy with that immediate emergency. Later, I was angry because I was put through all sorts of worry do to the card ordering emergency blood tests because she was so concerned. But as soon as it was determined the arrhythmias were not caused by medication, it apparently was no longer a concern to her. I am still concerned, but I guess there is nothing to do.

Izzy has shown some other distressing physical changes as well. After she was released from the hospital on April 11 (when we last posted), she has only made it to school for a full day about half of the time. Most of the time, she is in severe pain; usually severe stomach pain. Not all that uncommon in Izzy's world, but the pain is much more frequent and harder to deal with.

Along with all of the pain, nausea in the car has started again. Izzy is again vomiting when driving places. The pain gets so much worse in the car.

Yes, even in the pictures above, when she came to work with me, she was in extreme pain and couldn't handle the car. She still smiled though!

Then, about three weeks ago (I think), Izzy started showing signs that her oxygen saturation was dropping doing normal things. For instance, I saw her turn blue walking to class one morning. I pulled out our pulse ox, did a quick read, and her oxygen level was the mid-80s. In the past, we had been told that any time her oxygen saturation went below 90, she had to go to the ER. I wasn't doing that. She was happy and didn't even realize her oxygen was low, so I sent her to school and her health care aid, her teacher, and the rest of the amazing staff watched her.

Dressed for the one room school house.

Then her oxygen dropped again and again. And Izzy was getting more exhausted. Now, her oxygen is dropping regularly. She couldn't sleep due to the extreme pain. Her belly was hard as a rock at times. She wasn't eating hardly anything. She was waking in the night due to extreme pain, moaning and crying.

Our wonderful hospice team jumped into action and last week, we upped Izzy's morphine, valium, and she now has a hospital bed. All of those things have helped lessen the pain considerably. Izzy is mostly sleeping through the night and not waking up in as much pain. We are giving morphine regularly now, trying to keep the pain away and it seems to help. The hospital bed has been the best help. Izzy sleeps almost sitting completely straight up with her legs high and it helps considerably. She is comfortable. Even if she wakes in pain, it is not the same as even a week ago. We are so grateful.

Izzy's oxygen saturation still drops. It is not always below 90, but it is fairly regularly. She wears her oxygen a lot of the time now. That has been quite a transition! We have large tanks we bring to school. She's using her wheelchair a lot more. She tells us that the oxygen helps. She feels better, not as tired with it. Yet, she still tires very quickly even wearing oxygen. She has no reserves left at all. We went to the zoo for 2 hours on Sunday for International 22q at the Zoo. Izzy was so exhausted by the end! Oh my!!! The naughtiness (Izzy gets very, very angry the more tired and bad she feels)!

 

Izzy doesn't like to wear the oxygen at school. She doesn't like to use her wheelchair. She doesn't want to be different than the other kids. All of these changes and the even greater loss of control has caused Izzy a lot of emotional trouble as well. It has been emotionally traumatic for all of us--this sudden decline in Izzy's health. We are working through it, but are disheveled and exhausted most of the time. And Izzy cries a lot. We all do.

In the last week and a half, we have changed our life completely in order to have a safe adult at home all of the time for Izzy. We take her to school if she can make it. We wait for the inevitable school phone call because she is in pain or exhausted and needs to come home. Last week, Izzy made it to school for about two hours. This week, she went two half days and one whole. We don't know what the next school year will bring, but we are doing our best to try and make each day full of love.

Nobody knows what this decline means for Izzy. From what I've been told and read, heart failure tends to come in spurts. The person will be living their normal life for quite a while, then a sudden decline, maybe a little recovery, and plateau. The person continues that way for quite a while, getting used to the new normal, living life, and then the process repeats--decline, plateau, decline, plateau, decline plateau.  You keep falling down the stairs of heart failure one at a time until you crash to the bottom.  Of course, nobody knows how sharp the next decline will be, how many stairs there are, or how long each plateau is. With arrhythmias in the picture, we can't be sure there is even anything that will be under our feet with the next step. All we can do is try and help Izzy be comfortable and give her reasons to smile.

All that being said, one way to make Izzy smile a lot these days is when people eat ice cream for Izzy. It is that time of year! Izzy's Ice Cream Challenge officially begins June 4, 2016 (but people have their jars out already). If you don't know, Izzy's Ice Cream Challenge is a summer fundraiser for the Children's Heart Foundation-Michigan Chapter. We ask people to think of Izzy and all of the other children and adults born with broken hearts each time you eat ice cream this summer and then pledge a small donation for each treat--a dollar, a nickle, ten dollars. People keep jars, milk jugs, butter containers in their kitchens with Izzy's picture and throw in the money for each treat. You can also keep a tally (ice cream stickers work well). For every $40 donated to Izzy's Ice Cream Challenge, you get Izzy-designed car magnet and button to wear.

Button

6"x4" car magnet

The Ice Cream Challenge culminates at Izzy's Ice Cream Social, which will be Saturday, August 6, 2016, at the Family Life Center of the Mt. Clemens Presbyterian Church. We will be having a make your own sundae bar again, kid carnival games, and raffles. Tickets can be purchased by contacting me or at this link: http://weblink.donorperfect.com/2016Izzysicecream

And because we were told everyone loves to have shirts for the Ice Cream Social, Izzy again designed a tshirt for this year. It can be bought at this link: https://www.booster.com/i-ate-ice-cream-for-izzy.

Izzy's tshirt design. The teal will be the same color for picture and writing once printed.

Izzy would love everyone to eat ice cream with her. If you aren't in the area on August 6, please post pictures on Izzy's Ice Cream Challenge facebook page: https://www.facebook.com/IceCreamForIzzy/.

Mel