Where are we now????

Many people know that we had a cardiology appointment today and everyone wants to know what is happening. I think I received 10 different messages with the same question at last count and those are only the people brave enough to ask! So, I'm updating.

For those who don't see me regularly and are not on the Facebook, in the two weeks since I last updated, Izzy has still been having problems. The pain is still bad. We had to cancel our summer vacation of traveling around the state in an RV to see all of the places Phineas studied in school this year as he dreamed of doing (because Izzy's can't drive and Izzy is a little better sleeping in her hospital bed). We also had to cancel her involvement as a Wish Hero for Make A Wish this year because she can't physically handle the heroes hurrah. She has one good day, where she does normal stuff, and needs three or four days to recover.

Anyway, within 2 hours of cancelling Izzy as a wish hero, her cardiologist called me on the phone. (Her cardiologist is the Wish Hero liaison for the team Izzy was a Wish Hero for because she rides the 300 mile bike ride.) Anyway, we talked last Wednesday for 20 minutes about all that is going on--Izzy's pain, her drop in oxygen saturation, her lethargy, everything.

The first decision was to have Izzy try wearing oxygen all day every day as an experiment. So, we did that over the weekend. Izzy felt better than she had in a long time. She had more energy and less pain. She was able to do more than she has in the several weeks. She was even able to go to school all day on Monday with the oxygen on. Izzy was involved in the decision. And even though she was scared to wear her oxygen in front of all the kids all day, she did it.

Unfortunately,  Tuesday, she was feeling the pain. She slept until 10:15 and was in misery.  This morning, she was in a lot of pain. Putting her in a car for 20 minutes to go to the cardiology office was not ideal. But, we did it because Dr. Cutler wanted to see why Izzy's oxygen is dropping, why she is running of breath from talking, and why so tired.

We made it to the appointment (not without vomit as cars are evil).  Dr. Cutler stated that Izzy's heart looks identical to January and identical to last July. She is perplexed as to why the sudden change in symptoms, so she wants us to visit the pulmonologist to see if Izzy has some form of restrictive airway disease (she is not wheezing and her asthma is controlled). Dr. Cutler also mentioned that Izzy's conduit is acting odd. She stated that Izzy's conduit is pressed right up to her sterum, really pressed. She had told us this in January as well. What she also stated is that normally, a conduit will move with the heart. so, as the heart pumps, goes up and down, the conduit should too. But Izzy's doesn't. None of the cardiologists at Izzy's center had seen that before, so Dr. Cutler is looking into that while we are supposed to see Dr. Doshi.

Finally, Dr. Cutler did a bunch more research before we came in to try and find some relief for Izzy's stomach pains. Unfortunately, she found nothing. I told her (again) that I think Izzy's stomach pain is related to small arteries leading to her stomach. This time, she agreed that could be a possibility. We both also discussed that there is not much we can do for Izzy if that is the cause of her pain, except what we are doing--sildenafil and oxygen.

At the end of the day, Izzy is still Izzy. She still has pain. She still gets tired easily. She still needs oxygen. And there still are no answers. Thankfully, I wasn't expecting any this time.

Mel