This blog is mostly about my son David that has down syndrome and eats through a feeding tube.
Friday, July 22, 2011
Save the Date
Save the date....no it's not a wedding, graduation, bar mitzvah, or party. It's..................open heart surgery!!!!!!!!!!!!!!
In a perfect world, on August 8th at 8 a.m., I will be turning my sweet baby over to a surgeon to do the unthinkable. Just like everything else in my life this past year I know it sounds strange to those outside looking in, but it is my reality. David is having open heart surgery. Where they crack open his chest, hook him up to the heart-lung machine, stop his heart and lungs, fix the holes, and then start up his heart and lungs and hope for the best. So the picture above is how he looks pre-surgery, with minimal scars.
You may be wondering what is different now then it was a couple of months ago. Well the first thing is his last echocardiagram showed the pressure in his lungs is decreasing, which leads to the flow through the holes in his heart increasing. Once again, strange to say, but this is a good thing. The bad lungs with the high pressure has been delaying this surgery. And the surgery must be done some day and it is better to do before the lung pressure increases or becomes permanent. The other big part of this story is made possible through technology. David had a virtual second opinion from the guru pulm hypertension doctor at a leading Children's Hospital in Philadelphia. They package up the cd's and dvd's of all of David's imaging from the last year and this doctor was able to assess David's progress and give an opinion. Surgery is not as risky as originally feared due to the decreasing lung pressure and leaving the holes longer than 6 months could pose long term problems so lets get er done.
So you may be wondering how does David's mom feel about all of this. On most days happy, excited, positive, confident. And so far on just two occasions scared out of my mind on the possibility of him not coming home again. It happened last week at the gym while listening to my nano I heard this song and while the song was about a man/woman relationship it hit me as a mommy/David thing and I teared up on the teadmill (don't worry I didn't go flying off of the back or anything). So do you want to know what the song is.....Shania Twain Forever and For Always (listen to it thinking what I just said, I bet you will cry too).
And there ain't no way--
I'm lettin' you go now
And there ain't no way--
and there ain't no how
I'll never see that day....
'Cause I'm keeping you
forever and for always
We will be together all of our days
Wanna wake up every
morning to your sweet face--always
So you probably wonder why do I need to share all of this with you. I need to say it out loud and release it so I can let it go and move on. I need to do it for my inner peace. I love David so much and every day I am so happy to have him in my life. I want to yell it from the rooftops. I want everyone to know the joy he brings me and the love that I feel for him. He is so much fun working on trying to crawl and pull up to stand. Hell, he even said momma the other day. How can you not love this face.....