I get the most profound thoughts during my yoga practice. With each pose a whole new set of emotions come flooding through this ADD riddled brain of mine. I should write sooner after each class but tonight the evening was spent taking care of a feverish Isabelle, hyper Adeline and my profile on the headhunter site.
As I breezed through Facebook tonight I saw a bunch of comments on one of the pages I frequent. I haven’t said much on these pages lately, because to be honest- I feel as if people don’t want to respond to anything I comment on. There. I said it. I feel like the girl that you are embarrassed to know. And frankly, the whole clique atmosphere sucks especially in an environment that claims to be supportive. I posted a question, got some answers and that was enough for me today. However, on other mom’s posts- moms whom I admire and enjoy following – don’t exactly feel the same way about me. I know we can’t all be friends and sit in a circle but I would at least like to be a part of these discussions instead of being completely blown off. That being said, and since I apparently hav nothing to lose- I am going to move on to the subject of a video that as being discussed on this page.
The video was about adult single ventricle patients who have had the Fontan. The Fontan series of surgeries basically re-routes the circulation so the patient can survive. It is not ideal but it has brought many children to ages their parents couldn’t have dreamed of when first being told their baby had the most severe defect possible.
The cardiologist who was speaking during this video is someone I am not familiar with. I am sure he has credentials, etc. but he is treating a segment of the population as a whole. He isn’t seeing every Fontan patient that is out there. I listened and watched with my grains of salt.
I was aware of the liver damage that is very likely to happen. As he went through the dangers of salty snacks and processed foods, I chuckled to myself thinking about our bacon obsessed household. Then he went on to other complications, such as increased pressure in the ventricle, losing breath doing every day things. Not being able to enjoy an active lifestyle or even have children. How this all increases with each year the patient has Fontan circulation.
We knew there was a very good chance Isabelle would need a heart transplant eventually. Our cardiologist told us that the idea is for her to keep her anatomy for as long as possible, until her heart starts to wear out. Because according to this doctor, it most certainly will. My hope is that Dr. Emani will continue his work on trying to find a better solution for single ventricle / HLHS patients. The doctor in the video also mentioned that the longer a patient has a Fontan, the more likely he/she will have problems. WHich brings about the whole debate on when the third surgery should take place.
I have been very careful about what I say around this subject. People can read into what I am saying and claim that I am insinuating that they aren’t doing what they can for their children. Well, maybe they are right. Maybe part of me feels like I am being judged because we are having hers so early by other hospital standards. She will be a little over two years old. Maybe I do feel that what our cardiologist tells me is The Word and I don’t question it. I do have questions, and the age factor was a big one at our last visit.
Boston does not feel that delaying a Fontan is necessary. They claim that the data isn’t conclusive; that there is no benefit to delaying. As a matter of fact, I brought up some of the ages I was seeing on these pages and the response I received was “The fontan should be done before the child is four. It isn’t a good thing if it is delayed that long.” That is what I was told. And I believe that. I don’t question that- especially when I hear it from so many other cardiologists at BCH. And you can ask my husband- I bug everyone who comes into contact with us with questions abut this.
I want to know what I can do to save my daughter. Apparantly, one of the things is to make sure she eats healthy, organic foods that don’t have a lot of additives in them because those can be taxing on her already disadvantaged liver. Ok, got it. Another thing I can do is continually educate myself, ask questions and be proactive at every clinic visit. Believe me, I will bring this video up at our next visit. I’ll even have it up on the iPad.
My point is- and I know it isn’t a popular one- is that I need to enjoy every moment with Isabelle regardless of what her future brings. I cannot allow fear to suck me into an abyss of terror where I won’t enjoy anything including her giggles. Her smiles. Her joy at being alive. Call me crazy, but I think she enjoys being alive as if she knows what a gift she has been given. She laughs, smiles, loves to be with us and is just an all around happy baby. I can’t afford to worry about whether or not she will need a transplant for her heart or liver. I want to be here now. And yes, I believe the fontan should be done when the child is ready, not when the parent is. I know how scary this is but if she is showing signs of needing the next step you know I will be camping out in Fegan in the cardiology department. This isn’t about me. This is about her and what she needs. Dr. Levine thinks Fall 2014 is a great time to have a Fontan. I think she is right.
Oh- and I know I can be an abrasive, judgemental, outspoken person, but don’t think that I don’t pray for all of our children, cry with mothers who are watching their children lose their battle, or have my heart be lifted by seeing a child overcome great odds and thrive. I am still with you even if I don’t agree with you. And I will keep posting my thoughts and liking you photos whether you respond or not. I care about all of our children, and I have great respect for all heart parents.