Right before the rug was pulled out from beneath us!

Thursday, September 29, 2011

Surgery in January

As I sat patiently waiting for Jake to come out from having the stress test I hear the nurse answer a phone call from Jake's doctor. He had been paged and was returning the call... First thoughts, What's the matter with my kid... Second thought.. Really, You have to answer the phones in front of the waiting room...Then  I see the doctor walk by... now I'm really thinking what is wrong. Finally after wait what seemed like forever, Jake comes out and said they didn't do the stress echo test... The whole reason we came up was for that test... My thoughts again.. why...  But Jake wasn't sure why, He said they did two echocardiograms on two different machines.. but they were resting echos..
Noreen, the nurse practitioner, came in and filled us in that they didn't do the stress echo because Jake resting echo showed blockage and his gradient was measured at I believe she said 67,  the magic number is 50. If a patient scores over 50, they are a candidate for surgery. Also, the size of his heart wall has increased in size since our last visit in April.  Dr. Maron came in and discussed the risks of the surgery. Which he said  better quality of life occurs in 80 to 90% percent of cases after surgery. Risk of something bad happening less than 1%.  He sent us to see Dr. Rastegar, the cardiothoracic surgeon.   He is super nice, and literally explain how he will go in and cut the enlarged muscle out from the inside of Jake's heart.  He doesn't actually cut the heart in in half to get inside, he goes through a valve into the heart and cuts it out that way.
When they asked Jake how he felt about the surgery, He just said he wanted to wait until after December so he can graduate.  He said the 6 to 8 week recovery time is almost a quarter of school.  The doctors respected his choice and we will be scheduling the surgery for January.
We made the most of the trip and actually did a little sight seeing, with many, many breaks for Jake to rest.  But I'm so glad Jake got to get out and see some of the city, he really does love history. We watched a movie based in Boston , then went out and found some of the places in the movie, which was pretty cool. We walked the freedom trail, then fed squirrels and pigeons in the park.

Now, as a mom, I'm scared... I hope we are making the right choices. I know the surgery is the only way to make him better but how horrible am I that I feel relieved that he is severe enough that they are going to do the surgery. I just want him better. There is no cure. He will always have HCM, but the surgery will improve his quality of life.  He is 19 and sleeps more than my dad. I want him to be a normal 19 year old.  So in my sick and twisted mind I want him to have surgery and that breaks my heart because I don't want him to go through pain. 
True story about me... I couldn't get Jennifer's ears pierced when she was a baby because I couldn't put her through pain because for something I wanted, even though I think pierced ears on babies is SO cute. I couldn't do it to my little girl.  When she was old enough to decide she wanted to have her ears pierced she got them done.. but that was her own choice to go through the pain..
So...It literally breaks my heart that I want this surgery for Jake and feel like I'm pushing for it...I know it's different .. but it just doesn't seem right that I want him to have surgery. 
Being a mom has so many joys... but this part of being a mom sucks...

1 comment:

  1. I couldn't get Mady's or Kensie's ears pierced as babies either. They got theirs done when they were four, just like I did, and because they were old enough to say no. I'm the same way. Mady just got hers done last month!
    I love this photo of Jake. He has such wonderful spirits. I'm glad you got to enjoy some quality time with him while you went away, what a nice break for you both. You and yours are always in my thoughts and prayers. Love ya.