Another Day, Another Doctor

I had not really followed up on the cardiologist Dr. Cutler's request that I schedule Izzy to see Dr. Doshi, Izzy's pulmonologist/immunologist. I planned to, but was extremely busy last week between work, kids, and a big fundraiser for the Children's Heart Foundation. Besides, I didn't think it would change anything.

So, I was sitting at my home desk this morning, researching (that's what I do), and my phone rang. I thought it was the school, but thought to myself "that's odd, Izzy didn't go to school today. She's reading a book in the livingroom." I answered and it was Dr. Doshi's office, telling me that Beaumont had called and needed Izzy to get in. I laughed and said "I don't know about all of Beaumont, but Dr. Cutler was insistent she be seen." Anyway, since I'm rambling, Izzy got in today at 12:45 and was back in with Dr. Doshi by 1:30 (record time).

He confirmed that Izzy's current problems are most definitely not related to asthma. We agreed. Izzy even said it wasn't asthma. He also does not believe Izzy has an restrictive lung disease, like pulmonary fibrosis, which is Dr. Cutler's concern. He doesn't believe she is presenting with that. Dr. Cutler doesn't believe she is presenting with worsening pulmonary hypertension. The two of them talked and are considering having Izzy undergo CT scan of her lungs and a CT-A to see her as much of her pulmonary arteries and her heart as possible as well. (Her conduit can cause distortion).

I told Dr. Doshi that we only want to do more tests if it will help in treating Izzy's symptoms. If he wasn't going to change anything we were doing, then I didn't want the test. He wasn't sure. He didn't see anything else he could do other than insist on Izzy wearing oxygen all day, every day, which she is doing. But, he also didn't rule out that it could assist, so he planned to talk to Dr. Cutler again. I asked him to also consult with Dr. Lewandowski (the hospice doctor). I wanted all three to discuss what could change for Izzy if we did this test. (Mind you, just driving to the hospital is an ordeal as driving anywhere is an ordeal lately.)

So, he didn't change anything and didn't see anything other than what he felt was worsening pulmonary hypertension. He did, however, ask for Izzy's autograph, which made her very happy.

An hour and a half later, Dr. Cutler called me about the CT and CTA. She was surprised that I knew about it. She had no idea we'd gotten in to see Dr. Doshi already. I told her the same thing I told him. She still feels strongly that the test is needed. She wants to rule things out. I asked what we would do with this information. She believes it could help with symptom relief. She admitted that she was not concerned with Izzy's echocardiogram last week, but she was very concerned with the way Izzy looked and acted. Izzy is noticeably declining. Dr. Cutler wants to make sure we aren't missing something. She agreed to talk to the other doctors and get back with me though.

I don't want to miss something that could help Izzy, but I also don't want to put her through more if it's not going to help. Her life is in so much upheaval lately. She is sad, scared, angry at feeling so bad. We just want to help her feel better. So, that is where we are. We are waiting for the doctors to talk to each other again. I imagine that we be having a CT scan soon as well. Dr. Cutler did confirm that we won't be doing any tests with anesthesia as Izzy could not handle that at this time.

Other than these appointments, Izzy has had some good days and some bad. Thursday was family picnic at school and field day. Izzy's aid carried a small oxygen canister for her and Izzy was able to fully participate with her classmates. She had a great day. Unfortunately, Friday, she couldn't go to school.

  

 

 

Sunday, Izzy did get to the zoo for two hours. Unfortunately, that was too long for her, even with oxygen and the wheelchair, but she did get to do some normal kid things. We try so hard. She wants to have fun, but her little body is so tired all of the time these days.  At least this morning, I had about 30 minutes of my happy girl before the pain hit again and she was dropped back down. I got these pictures when she was trying to go to school.

Thanks for checking in on our girl.

Mel