In my last update, I mentioned that Izzy's cardiologist wanted Izzy to see the pulmonologist. After a month of trying to get an appointment, last Wednesday, the doctor's office called and said Izzy could get in on January 30. We took the appointment, but reminded them that Izzy was instructed to see the pulmonologist ASAP in beginning of November. Less than 10 minutes later, we got a call about a cancellation and Izzy was put on the schedule for last Friday at 11:30. She was there for over 3 hours!!! Good thing we love the doctor because he is the only one we'd wait for that long!
Anyway, Dr. Doshi listened to Izzy. He didn't like what he heard--fluid on her lungs. This is not surprising with heart failure and a persistent cough from Izzy, but still sad to know. He ordered a chest x-ray before her next appointment in early February. He also ordered a ton of blood work to check up on Izzy's immune system and how it is doing after 7 years with Hizentra (weekly subcutaneous immunoglobulin transfusions).
Dr. Doshi also wants Izzy to see her orthopedic doctor soon. Izzy's scoliosis appears to have progressed quite a bit and Dr. Doshi is wondering if the great curvature of her spine is interfering with her ability to breathe. Dr. Zaltz had last talked about surgery for Izzy and we stopped seeing him because surgery is not an option. However, at this point, the hope is a brace may enable easier breathing for Izzy. Izzy is not in agreement. Apparently, when she stopped wearing braces on her ankles, Izzy promised herself she'd never wear a brace again. Dale and I said she should not have made such a promise without discussing with others first!!
Finally, Dr. Doshi agreed to start Izzy on an inhaled medication to try and increase oxygen exchange between the lungs and the miniscule pulmonary arteries as Dr. Cutler had asked. Unfortunately, the QVAR first ordered for Izzy didn't work. Izzy could not inhale deep enough to activate the inhaler and release the medication. She tried and tried to no avail. Izzy thought it was mean that a pulmonologist would force someone with lung disease to inhale deeply. We explained that was the only way to get the medicine where it needed to go in the lungs, but she still felt it was unfair. Regardless of fairness, she couldn't get it to work. So, this morning, a new medication and inhaler was called in to see if it would help. This inhaler is not activated by Izzy's ability to breath in, so will, hopefully, work better. It is all just a trial anyway as Dr. Doshi believes Izzy's problems are due to heart failure, but he is willing to help Izzy in any way he can if he can.
Other than all of that, Izzy has been making it to school more than she was in early November. She has had several days where she made it to school most of the day. Then she has days like yesterday where she goes for a couple of hours then takes a 2 hour nap.
Izzy did have a great Thanksgiving. She didn't eat much (to her dismay), but she got the family time that she so desired. She also got to watch cheesy romantic Christmas movies with lots of people. She loves those Hallmark Christmas movies!!!
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| Izzy with her Jack Skellington ornament! |
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| When Izzy doesn't feel well, the dogs help her. |
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| Phin cut off all of his hair!! |
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| New face mask for oxygen is way better than a nasal cannula now that Izzy needs to be on 4L of oxygen. Less noisy! |
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| Izzy got to see "Ralph Breaks the Internet". She had been looking forward to that for a year! |
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| We made lasagna together. |
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| Making Christmas cookies! |
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| Aren't they gorgeous!!! |
It was a little bitter sweet though. Since Izzy had such a rough start and she was at school for most of the day, by the time of the party and the sing-a-long (normally, her absolute favorite two hours of the entire school year), Izzy was miserable. Izzy didn't eat any treats or drink her hot chocolate. She stuck it out, but she didn't sing much either. She did tap her foot to "Jingle Bell Rock"--her favorite Christmas song. She had to be carried into the house, where she collapsed on the couch. Thankfully, she was able to eat a little ice cream and she perked up a little.
That is how it is for us. All of these highs and lows make me not quite as excited for Christmas as Izzy. I am looking forward to seeing her happy face and watching both kids delight in the magic. But part of me is always waiting for the other shoe to drop. We had a family Christmas party Saturday. Izzy got to stay up late, have fun, and be a kid (at least part of the time). She ran around some without oxygen on and out of her wheelchair. Then she spent the night at her Ma and Papa's house. Sunday, she rested all day and even went to bed early. Monday, she had to be woken at 11:00 and was upset because she just needed sleep. She rested for the remainder of the day. She hadn't really done that much over the weekend, but it had wiped her out. Then, this school holiday party was barely nothing. She watched a movie, ate lunch with friends, and walked around her classroom. She was completely spent. What will actual Christmas do? How will she handle it all? These questions along with a dozen more are constantly running through my brain. I try to just be in the moment and enjoy, but that is so much easier said than done.
We hope all of you have wonderful holidays and that 2019 brings you more smiles than frowns!
Mel
I love you all😘
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