Good Days

I had been waiting to update the blog until I had heard back from the cardiologist or immunologist or both about the blob seen on Izzy's echocardiogram in December. You may recall, at that time, we were told that the cardiologist was worried the blob could be some sort of slow growing infection on Izzy's patch. Considering she had had a fungal ear infection since late August/early September, the cardiologist planned on talking to immunology and the ENT.

Because every witch needs to wear a beautiful gown for Christmas Eve.

Despite multiple phone calls to all of the doctors, I didn't hear back from cardiology until last week. Actually, I guess that is not quite true. Izzy was seeing the ENT every other week for quite a while. He was never contacted by cardiology, but told me he had never heard of an ear infection going to the heart. And, most thankfully, the ear infection appears to have finally been cleared up completely! Izzy has gone back several times now without any sign of infection.

Back to the cardiologist though. Her office called once they had the results of Izzy's 24 hour holter monitor that looked at Izzy's cardiac electrical system (so to speak). The cardiology nurse told me that Izzy's monitor looked great! That Izzy was not having as many arrhythmias, PACs, or PVCs as she had a year ago. And Izzy's blood work looked good off of enalapril, so we were permitted to discontinue it completely. This is great because Enalapril has always caused Izzy stomach pain.  Without the medicine, which she was taking twice a day, she is actually eating more. Don't get me wrong, Izzy is not eating like a typical child of her size, but she is eating more than an Izzy. It took me a couple of phone calls with the nurse to get this information and yet, I still heard nothing about the blob!

She was wearing the holter monitor while we bowled the week between Christmas and New Year.

 

Finally, last week, I spoke to Dr. Cutler. She stated that she looked at Izzy's echo again after the December appointment and compared it to old echos. Apparently, the blob has been on Izzy's patch inside of her heart for years. It is just not visible with every echo. Because of that, Dr. Cutler was no longer concerned about it and did not contact the other docs about possible infection because it was clearly not an infection to her.

And we heard from immunology last week as well (or it may have been the week before since I've been slowly composing this post for a while now). Izzy's bloodwork that looks at her immune system came back as good as expected. With her weekly army (immunoglobulin infusions), Izzy's immunoglobulin levels are good. Her T cells are still very low, but there is nothing that can be done about that. Dr. Doshi was very happy with her. He even told Dr. Cutler that he was very happy with Izzy's lungs as well, once again verifying that any desatting (oxygen levels dropping) is not caused by asthma or restrictive lung disease.  Of course, Dr. Cutler states that she doesn't know exactly why Izzy requires oxygen these days, but it helps Izzy. That is all that matters.

Clearly, Phin made a big change! He donated his hair to Wigs 4 Kids! And yes, he is growing again to donate again.

The biggest change in Izzy's life happened about 2.5 weeks ago now. Izzy had an emotional breakthrough and a complete change of heart. She had been missing school most of the time from pain and anxiety. Many days, the anxiety caused the pain. Izzy would make up excuses not to go to school, tell us she wasn't feeling well so she didn't have to go, and then she would get anxious about not being truthful, then the anxiety would cause more pain. While Dale and I would know most of the time when she was lying, we had no fix because the anxiety beneath the lie was causing pain. It was a never-ending, self-perpetuating circle. Izzy was causing herself nightmares and she couldn't sleep at night because of her anxiety over school. But after a moment I am less than proud of, when I got very angry at catching Izzy in one of her untruthful moments, trying to get something she wanted through fibs, a switch flipped in Izzy. She is less anxious now and tells the truth. With less lying, she is less anxious, and has less pain, and she is able to go to school more. We made the circle positive. I'm not sure why this happened, but I am happy with the results.

Izzy is not able to go to school every day and she still sleeps about 12 hours a night and gets to school around 10:30 or 11:00 am, but she is happy. Before, she seemed to be self-isolating at school and now, we hear about activities and friends again. We do notice that Izzy is getting exhausted a lot these days, but in a good way. She is exhausted from participating in life and not exhausted from pain.

Between the decrease in anxiety and pain and the discontinuing of the enalapril, Izzy is eating more. She has cheeks again. Izzy is not looking quite as sick.

Izzy does have these weird episodes. I'd say they come once a day or every other day on average. She'll suddenly feel hot. Her heart isn't necessarily racing (sometimes it is), but it is beating faster than normal and when I feel her chest it seems to be pounding harder (if that makes sense). Her oxygen sats jump all over--drop into the 80s and then up to the mid-90s on 3 liters of oxygen. Izzy always says she doesn't feel well in these moments and sometimes her chest hurts. They don't last particularly long, but do seem to be happening more regularly. We don't know what it means, but watch her.

Other than that, life goes on. We have been busy planning Izzy's 9th birthday party. We have just finished reading all of the Harry Potter books with her (I bet you couldn't tell that from all of the pictures above with wands). Izzy is having a Hogwarts party, where she gets to be Hermione Granger and Lily Potter (not sure how she is going to be two characters at once). She is so excited!

The Magic 8 Ball is the closest thing she has to a crystal ball.

  

Thanks for checking on our girl (or should I say our witch),

Mel

PS

I would be remiss if I did not mention Heart Month. Of course, each year we raise awareness of heart disease during February. February 7-14 is Congenital Heart Defect Awareness Week. We are always trying to raise funds for The Children's Heart Foundation since it is the only national charity dedicated to funding CHD research and I am the President of the Michigan Chapter and sit on the National Board. We know the doctors have said there is not enough time for research to come far enough to change the course of Izzy's life, but they don't know the course of her life yet! Nobody does. Research is the key! You can donate here: CHF-Michigan! Or, if you want to help in a more tangible way, we would love more volunteers. We have a lot of great events in the works that would benefit from your time. There are two heart walks in Michigan (Kalamazoo in May and Troy in September), Hops for Hearts is coming back this year in June in the metro-Detroit area, Izzy's Ice Cream Challenge and Social will take place again this year, and my sister is planning a fantastic gala, the Sweet Hearts Ball for next February at The Henry Ford. Your help on any of these events would be greatly appreciated. And if you don't live in Michigan, I can connect you with my friends who run chapters across the country!