Charlotte literally is an 'old pro' at these visits now. I don't even have to direct her anymore she just listens to the Medical Assistant LaShay and does what's needed beautifully. Her stats were all good, she's gained 5 lbs and I don't have her height on hand but I know she's a lot taller. She was a little upset however that we did not have an EKG and kept saying "I need my EKG" but I assured her that she was having a 24 hour holter which is a portable EKG and the tears were avoided. Goof!!
She did amazing for her ECHO and only whined a little here and there. We were in the room without a TV too so that was a big feat, luckily I had angry birds to distract her a little although I don't even think she needs that anymore. She just carried on a conversation with the tech Jodi and sang to herself.
For the first time EVER her valve was leaking just enough that they were able to measure her pressures which is GREAT news because that means Dr. L'ecuyer got good pressures and said she can avoid her heart cath in November (unless something changes between now and then of course), WOOT WOOT.
Her shortening fraction was around 25% and a normal fraction is between 28%-42% so we're inching closer which is also a VERY GOOD thing!! Her SF when she was a baby was in the single digits like 4%-7%. As per usual the meds seem to be doing the trick!!
Her left ventricle is still very dilated and the muscle stretched out. When she was a baby her heart size was I believe something like 7-8 standard deviations above normal and now it is around 4-5 deviations above normal. Basically if we can keep it from dilating any further her body will sort of potentially grow into her heart size. It doesn't mean the muscle will get stronger, or heal it just means it will be proportional to her size.
The one minor thing brought up today that has not been an issue before is that she was experiencing some arrhythmia's during her echo. They are not happening within a small time frame and Dr. L'ecuyer said her last holter showed a couple here and there but as of right now he's not concerned. She was fitted with another 24 hour holter and I'll mail it back tomorrow and within a week should know if they found anything significant.
All in all it was a POSITIVE report and because there are no significant changes or worries we stay the course. I did ask about some of his patients that were a little older than Charlotte that he had mentioned when she was first diagnosed. At the time (3 years ago) when he was explaining the variability of her disease he said he had several children who were medically managed with medication, growing and thriving 3 years or older who had also been diagnosed as babies. Today he said he had one child who went down hill at age 5 and had to be transplanted. Another who was still doing well on medication but sometimes required a hospitalization tune up, meaning a virus/flu causes the child to be hospitalized so the Dr.s hook them up to milrinione (their favorite IV heart drug of choice, lol) to give the heart a boost. He also has a CM child who is 12 still doing like Charlotte is now. I know he's lost at least one, although I'm not sure that was a cardiomyopathy child or a different heart problem. Basically he just reiterated what I already know and the reason why some of you might not understand my own emotional variability. He said that with Charley's muscle being so weak, and her ventricle so stretched out that it is very unlikely that she will live to old age this way and never experience complications requiring further action to be taken. It's just a wait, see, and try to stay on top of it prognosis.
Cardiomyopathy has no set path, it has no mercy and even though you do everything 'right' so to speak anything can happen at anytime. Ask any of my friends who've lost their children and they'll tell you they 'truly' believed that their children would always be with them.
I'm sorry to my friend for making her cry in the McDonalds drive thru today after she listened to my voicemail (I was losing it when trying to tell her how it went;) lol.. I still leave that office with good news and I shed tears of joy and glee that she is doing so well, and then I also shed them for the fear of not getting any guarantee on her future. It's a frustrating life to look at your child and think they look so amazing but also always being on guard so as not to miss a small symptom that things are turning the opposite way. I feel like we have climbed mountains and grown so much in acceptance of what we're facing but I am always worried, always on guard and I'm learning to just deal with that and take it one day at a time. It has given me a new appreciation for life and living it to our fullest.
Because we are so blessed to have such a prayerful community I would like to ask a favor. There is a woman within my CCF family who has become very important to me. She's been at it longer than I and offered a lot of strength and support to me in being a heart mom. Her name is Dorie and her son Matt was listed today at Childrens in Boston for a heart transplant. Matt has done okay managed with medication but like so many kids, as he's hit adolesence has been declining in his health and the doctors now feel it is his time to be listed. I imagine this is a very scary time for them and Dorie has expressed her feelings about the heart strings being pulled because of course she wants her son to live and grow in health, but knowing that another family has to lose their own to save hers is a difficult thing to experience. Please if you would add Matt to all of your lists that you have shared Charlotte with, it would mean a great deal to me.. Thank you.
So that's all for now, maybe I'll write later in the week about how I've been doing. I feel like I've made a lot of headway in acceptance, and gaining my power back.
Love to all of you:)
Courtney
