Two Long Months

My mom used to tell me if I didn't have anything nice to say, to say nothing at all. I guess that's where I've been lately. No update in two months because the last two months have felt like hell.

At first, I was very angry about several things and didn't want to write in anger.  Then, I thought I'd wait to update when things improved. When nothing seems to improve, I just walked away completely.

But this morning, I decided to transfer more of the carepage over to this blog. (I really want to close that down. With almost 500 posts and over 5500 messages from 8 years that takes a while.) I completed the transfer of 2013 this morning. That was hard. We started 2013 with Izzy in the MRI, determining what next, then talk of surgery, then the surgical board said no surgery would help, then we started down the transplant road, and we ended up here, where we've been for 3.5 years--Izzy in hospice just living life. Seeing those updates again, reliving those moments was heart-wrenching.

Reading my old posts was also uplifting in a way. In 2013, nobody could tell us Izzy would live until 2016. All they knew was that her heart and lungs were sick and not fixable. Izzy has done remarkably well for what we were told. Remarkably well. So I decided that even though these last couple of months have been hard, they could have been so much harder and they will get much harder. I have to write it all down now, so three years from now, I can look back again and realize how good we had it. So, I will update.

camp drop off

Izzy did go to heart kid camp as I mentioned in my last update. It was not the experience we had hoped for. We've been living with the emotional trauma since she has returned. I don't want to get into specifics because I hope the camp will take our experience in mind in the future and the same problems don't occur for another child, but I will say that camp made Izzy feel the weight of her disease in a way she had not before. She left feeling all the more alone and that nobody anywhere is like her. She is very angry with her life and depressed.

camp pick up

We have been working with Izzy constantly to help her move forward emotionally and physically. Izzy has lost a ton of weight since I last posted--over 4 pounds. She is now down to about 33 pounds. I'm not certain her lack of hunger is not related to her emotional well-being. To be sure, she's never eaten well, but this an entirely new level of not hungry. We can't get her to eat ice cream even. Frankly, I have no idea how she continues to play and have fun. I would be laying down, asleep all day every day with the little amount of food she takes in. Dale and I often wonder how long she can last this way. She doesn't have much more weight she can lose. (Looking at the posts from early 2013 today, I see many of the same clothes she wears now. The tennis shoes she's been wearing all summer were bought in early 2013. Does your 8-year-old still fit their shoes and clothes from when they were 4?)

 

Thankfully, we have managed to get Izzy's pain mostly under control. She does complain of pain daily still, but not in the same way. She gets pretty large doses of morphine three times a day, but she is not moaning in agony all of the time. I am so grateful.

Following camp, Izzy refused to wear her oxygen at all. If we made her wear it, she refused to leave the house. Thankfully, over the last 6 weeks, we've got her wearing the oxygen all day. That helps her feel so much better.

As for the tests that were discussed at length in my prior posts, they have not been completed. Izzy was terribly anxious about them. Working herself up into lots of pain and misery. Then, on the morning of the test, after we had given the prep, the hospital called and said the machine was broken. I was angry. I had not wanted these tests from the beginning. I was never told anything they would do differently because of the tests. It caused pain and misery for Izzy, so I haven't followed up. I'm not doing more tests on my baby when nothing we do for her will change. I don't care if it provides another culprit to blame for her dying.

Our summer wasn't all bad though. We managed to have some fun between the anger, crying, moaning, and mental breakdowns.

First, we held Izzy's Ice Cream Social in early August. It was the culmination of Izzy's Ice Cream Challenge. We raised over $5000 for the Children's Heart Foundation-Michigan Chapter. We do still have some kid-sized tshirts if you are interested. And there are still a ton of buttons and car magnets if you'd like to donate.

 

 

 

 

Phin turned 10 and we celebrated for weeks, with a party followed by a trip to Mackinaw and Mackinac Island!

Before

After

 

 

 

 

Ma's birthday was in Mackinaw too

 

 

 

 

 

Queen Izzy at the Renaissance Festival

Of course, school started this week. Izzy is a third grader and Phin a fifth grader. Unlike most years, Izzy did not start off school well. She had too many bad memories from the end of 2nd grade and being sick and in pain and then with fallout from camp, she was extraordinarily concerned about wearing oxygen and being different from all of the other kids. Gosh, for a week straight, about an hour after she'd go to bed, she'd start moaning and crying, anxiety causing migraine headaches and stomach aches.

 

 

 

 

 

 Amazingly, Izzy did make it to school most of this week. She was late Friday and came home early on Wednesday, but attended the full days for the rest of the week. Izzy hospice nurse, Kim, and I gave a presentation to Izzy's class about why Izzy wears oxygen, uses a wheelchair, and is late or leaves early. The kids all got nasal cannulas to try. Izzy loved that! She said it makes her feel less alone.

Unfortunately, Izzy is still facing a lot of anger and sadness over wearing oxygen and so many things. She hates feeling different (don't we all). And she is angry that there is nothing anyone can do to change her differences. There are no contact lenses for oxygen tubing. There is no makeover for a failing heart. We hope in time and with lots of positive reinforcement that Izzy will come to accept who she is and stop hating who she is not.

This morning (the boys are camping in Mackinaw again to spend the entire day exploring Fort Michimilimac) Izzy and I are taking it easy, recovering from her first week back to school. She woke with another exploded ear drum (saw the ear doctor Tuesday and he said that ear was completely fine). This is the third ear infection in a month. She hasn't eaten anything yet at 11:00 am, but I'm hopeful that pad thai will make her change her mind.

Thank you for checking in on our girl.

Mel

PS

If you will be around Troy on Saturday, September 24, 2016, from 9 to 11 (or pack a lunch and staying later with us), we would love to see you at the Southeast Michigan Congenital Heart Walk. I am a co-chair of the event this year. We hope it will be bigger and better than ever. If you do want to join Team Izzy, you can follow this link: Support Team Izzy. Please also send me an email at akarunaway (at) yahoo (dot) com if you are interested in a Team Izzy cape to wear to the walk. Izzy decided that our team needed golden capes for the walk this year. I will be ordering them Monday and putting the designs on next weekend. The cost will be less than $10 a piece.