Friday we are headed to the pediatric pulmonologist to find out about Madelynn's trial run. Back in February when Madelynn had a check up the doctor decided to let Madelynn take two more weeks of breathing treatments and then told us to stop them. So as of the last week of February she has not had a breathing treatment.
Phil and I talked about it and always thought she would be ok with out the treatments but you just never know. There are times when I can look at Madelynn and tell you something is really wrong. Being her mom I just knew. Other times I hoped for things for her and hoped them so long and so hard that when they didn't come true I felt I had failed her in some way.
I believe that tomorrow's visit will just be a confirmation that for now we can just go on and live a normal life of a family of six (don't forget Cami). Over the last few weeks that realization is starting to sink in. I am still cautious with germs and who we are around but in some cases I feel like a RECOVERED heart family. Madelynn's biggest hurdles after her heart surgery was not her heart it was all the other things that went wrong.
Some days my mind wanders about all the possibilities of what could go wrong. You see with the heart anything can go wrong and everything can go right. Right now were are at the everything can go right. Since I discovered about two weeks ago that Madelynn lost a pound in less than 5 days she has started eating. Right after Camp LuCK she really started to put some food down and asking for food. Which are all good signs. We will get a weight tomorrow and I can't wait to see what it is. My hope is for a small victory. I would be happy just to see that she put that pound back on and ecstatic if she weighed more 21lbs 6oz.
Sometimes I worry when I see her running, playing, jumping, giggling that I will forget what to look for in case something goes wrong. I also hear stories of children that only lived for 5, 6 or 10 years and then they are gone. To me that is like some kind of cruel joke. Your children are supposed to live beyond you and bury you. Parents are not supposed to bury their children. I just worry the way her aorta is designed it will not be able to withstand her growing and adult body.
You see I have said before that Madelynn's CHD is a very common one. It is so common in fact that it is not usually repaired with open heart surgery. It is done with a less invasive surgery through he armpit. There are also diagrams of her defect that when the repair is done the surgeon just checks the box as to which one the child had. Madelynn's surgeon had to draw a picture of her aorta and there is no way to know if the design of her aorta will be able to withstand her adult body because it needed an "extended" repair.
Although I have been told sometimes it is a very dangerous thing............all we can do is Hope. Hope that she is able to live a normal life. Hope that this journey in a few years will all be a memory. Hope that if her heart can not withstand her growing body that by the time it needs some type of repair the tools and knowledge are available to save her. Hope that she will live life to the fullest. Hope that she will not squander this second chance. Hope that whatever the reason she was chosen to be on this earth that one day I understand why. Hope just because sometimes it is the only thing that gives us peace.
So today I will laugh, smile and play with Madelynn, I will cheer Kaitlynn as she finishes kindergarten next week and I will help Jack understand "Why" and not just because Mommy said so.
It will be a busy weekend I will post results of the visit sometime this weekend.
TTFN~
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