Actual Update

Aside from surprises, life has been exhausting for Izzy.

The week after the princesses came, Izzy was in bed pretty much all week. She was in pain and tired. She didn't make it to school once. Granted there were two half days of school, so by the time she felt well enough to attend on those days, school was over for the day. The other days, pain or exhaustion took control.

When Izzy feels well enough to go to school, her anxiety takes over and makes her feel worse again. Dale and I (and my parents when they are with Izzy) have to figure out why Izzy does not feel well--her failing body or anxiety. If we let anxiety win, she'll never leave the house. It is incredibly hard to try and force her to face her fears while not trying to hurt her more because telling the difference between real pain and anxiety is more difficult these days because she never really feels good.
(Although, she is feeling pretty good at this exact moment, playing games with her brother.)

Last Monday, Izzy had her 6 month check up with cardiology. Dr. Cutler said that Izzy's left heart function looked pretty good. Izzy's right heart function was not good, but that most everything looked the same as before. Dr. Cutler said she does not know why Izzy is in so much pain and so tired so often. To try to help Izzy feel better, we did change her lasix dosage and had to go up on Izzy's oxygen. Izzy is now wearing 4L of oxygen all of the time. She hates it because the higher flow, the more noise in her ears. Because she wears hearing aids, that is the noise that is amplified rather than the noises Izzy really wants to hear.

Picture Izzy had to have to show Dr. Cutler her puppy and throne (for Halloween costume).

 Dr. Cutler did ask for Izzy to see the pulmonologist soon. Even though Izzy does not have asthma any longer, the hope is that starting Izzy on meds to open her airways more in her lungs will offer relief. The theory is that Izzy's minuscule pulmonary arteries can't get enough exchange of oxygen from the lungs due to lack of surface area overalp, so if we increase oxygen and open up the airways, there is a greater opportunity for oxygen to get in bloodstream and help the entire body. Dr. Cutler's goal was to help Izzy feel better--alleviate symptoms. We have yet to be able to set an appointment with pulmonology though, despite calling.

Simply going to the cardiologist office wore Izzy out. She slept for over 2 hours upon returning. Tuesday, she did not get out of bed. Because of that, Izzy was petrified about Halloween and whether she'd get to have fun, but she did. She had the best Halloween ever! Izzy made it to school for the party and parade and she got to trick or treat.

Queen Izzy

Biggest smile from the day: eating goodies with her friends!

 

Yes; the puppy has a red gown on as well.

Halloween. Those smiles. Those moments. That made up for the days and weeks of exhaustion and worry. I can't really describe what it is like to live in this constant state of: "Where are we? What does it mean? How can we continue? What can we do?" We can't ask for life to get better because what does that even mean in the context of terminal illness? But Halloween reminded us why taking this path was so important. Don't get me wrong, Halloween was hard. It sucks to watch how far behind Izzy is from her peers. It sucks to be reminded of all she does not get to do. It sucks to know Phineas is suffering too. It sucks to be so tired from constantly having to be on and ready that you have no energy left. But smiles from my kids help to get past the rough patches. Pictures of that sheer joy allow us to remember and push through to that next great moment. And in case you are wondering, Izzy's next plan is a Thanksgiving Feast full of family.