I know I told all of you that Izzy wasn't scheduled to see the cardiologist until July 30. She wasn't. The day after I posted though, her hospice nurse asked how Izzy was feeling. Izzy was still feeling bad without being sick, so hospice said I had to tell Dr. Cutler everything that has been happening. As you likely know from my posts, I ended up writing a lot and attaching pictures. Based upon the increased concern, Dr. Cutler asked to see Izzy as soon as possible, which was today. The picture below is Izzy reading to Dale and I at the office.
The good news is that Izzy's heart looks the same as the last echo--right ventricle barely present on the screen (in my lay opinion, there are only three chambers when I look at the echo screen). Izzy's right heart function is bad and her left heart function is not good. There is no congestion in Izzy's liver or inferior vena cava though, so it does not appear that Izzy's swelling and lethargy are necessarily right-heart related or at least not due to worsening of the right heart function alone. Granted, her right heart sucks (to put it bluntly) and she has many things wrong with her that cause right heart issues (high pulmonary pressures, abnormal tricuspid valve, tiny pulmonary arteries, kinked and misplaced arteries, small lungs, poor left heart function). Any one of those things can be the culprit and we just don't know. There are no true explanations again. Since Izzy's left heart function is "not good", we are adding digoxin back to the med list. Digoxin is an old drug that helps the heart beat stronger. Izzy has been on it before a long time ago. It mainly helps the left heart. The idea is that if we improve the left heart function some, then hopefully the right-heart will work a little better as well and the swelling and constant pain Izzy has will subside. I won't show you the picture that Dr. Cutler saw, but Izzy's belly gets really large and very sore. Her face has had a couple bad swelling mornings as well.
Dr. Cutler, of course, is also not convinced that some of this is not caused by asthma. So, we are experimenting. Izzy is to get Xoponex (heart-safer form of albuterol) in the morning and evening along with her daily pulmicort to see if opening her airways helps with Izzy's swelling and pain. We always have xoponex is the house, so this is not a huge deal, but that is an additional 8-10 minutes every morning and night that has to go to breathing treatments--a full half hour of every day spent giving breathing treatments (i.e. watching tv or playing a tablet).
With those, Izzy will now be taking 17 medications regularly. I have no idea how many doses that is--somewhere over 20 doses of medication a day. Yikes! Unfortunately, digoxin also requires blood draws to make sure the levels are correct. It can easily cause toxicity. Izzy is starting at a low maintenance dose though, so should be safe (and Dale and I will be extremely careful about giving the med--as a baby, we accidentally gave Izzy a double dose!!!!!!)
Other than that, Dr. Cutler was happy with Izzy. She even wants us to let her know about Izzy's Ice Cream Challenge! It is going so well! And today, we got the bracelets everyone can earn for every $20 raised for the challenge!
Send me an email at akarunaway@yahoo.com if you would like more information or donate $20 to Team Izzy (and give me your address) and I'll mail you a bracelet!
Thanks for checking in on our girl. She'd want you to know she lost ANOTHER tooth!
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by June Spriggs
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