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...

Sunday, September 25, 2011

Calling all Super Powers!

 I have to admit, I'm nervous. I just can't tell what I'm more nervous about, what the doctors will tell us, or whether or not I get us lost. Truth be told, I have been know to get lost while following others. How am I going to find our way to the baggage claim area let alone any restaurants. That is the main reason we booked the hotel directly across the street from the hospital. Also, because we don't have to rent a car or get a taxi except to and from the airport.
    Secretly, I think my husband is like a super hero. I seem to be the damsel in distress quite often, not knowing my exact whereabouts.  I find it amazing that I can call him from anywhere and say honey, there is a Seven Eleven on this corner and a Taco Bell on the that corner, and he can tell me exactly where I am and which way I need to go. I think his super powers kick in when we are at the airport too, because he always just grabs my hand and leads me to the baggage claim... I 'm not sure how he does it. Are there big signs leading the way that my short  5 ft. stature needs to stand on tip toe to see? He assures me there are signs everywhere.

   We packed for cold weather. In Boston, the low will be 63. For this Florida girl, that's freezing. I hope we have everything in the suite case that we need. I was a little distracted while packing. Gracie Mae is Jake's dog. She totally sensed that we are leaving and climbed into the suitcase. She just wants to go, too. Silly dog.

We fly out tomorrow and have three appointments on Tuesday , then we will fly home Wednesday. It's a short trip, but hopefully, a productive one. One of the doctors here suggested I take a flash drive for downloading all Jake's test or medical information, so each new doctor that sees him will have all the information they need.  Also, I think it will be pretty cool to check out the MRI pictures.

Well, I have set out my big girl panties; crispy and clean and ready for tomorrows adventure...in hopes that they will allow me to hone in on some of the my husbands' superpowers, so that I can lead my little boy hopefully to the correct airport terminal and on to the right plane... I wonder if I write a big S for SUPERMOM on my big girl panties would the scanner at the airport pick it up? well.......all I can say is ....I'm packed... and I'm as ready as I'll ever be...

Monday, September 19, 2011

Seven short days!

   Two weeks ago, I went and got a tattoo in honor of my little boy. I couldn't decide what to get, then it hit me. Don't stop believing, partly because it is what he sang when they wheeled him out of the operating room, partly because it says it all. Don't stop believing he will get better, Don't stop believing that god will guide us through this. Just plan and simple Don't stop believing...
  Finally, the night I had been waiting months for...  the Night Ranger, Foreigner, and Journey concert. I had been worried for a few weeks about how the night was going to go. There is a lot of walking involved, would Jake be able to handle it?  The weather forecast was predicting rain for the night of the concert, would it rain and ruin the evening?  But then everything started looking up, the weather looked like it might rain Sunday instead of Saturday and suddenly Jake wasn't taking afternoon naps. WOOHOO.... around noon the day of the concert I took a nap ( yep, you read that right, I took a nap.. not Jake.. I know NOT normal) ... Bill woke me up to get ready and... I was miserable, seriously MiSeRaBLE.  I did the Netty pot thing, took some Dayquil, Ginger root and Advil. My throat was scratching and sore so I bought a frozen drink to cool it.  Just as the concert began I started feeling pretty good... ok it could of been the frozen concoction.. but the point is I wasn't feeling miserable and could enjoy the evening. Yeah.. Night Ranger played, then Foreigner came on stage and they Rocked it... then when Journey began to sing their second song my meds began to wear off and I was miserable again... headache, stuff nose, sore throat, achy body, fever.... Bill looked at me and asked If I wanted to go home... Yeah I must of looked that bad.  All I could think was I waited months for this.. I'm not leaving, I don't care how crappy I feel... Then it happened...  My favorite part of the evening, when Journey came back out and sang Don't stop Believing . Bill, Jenn, Jake & I all played our best air guitar and sang as loud as we could. We ROCK IT!  It was truly awesome. Definitely,  a moment I will never forget!
In seven short days we return to Boston to find out if Jake is a candidate for the next surgery.... The next seven days... may turn into the longest seven days of my life. It will only be Jake & I this time. I'm nervous about so many things.  I hope we get some answers, does he need the myectomy, and if so when. I hope I can remember everything the doctors say.... I hope the trip goes smoothly.  I hope this cold/flu is gone by then AND I pray Jake doesn't catch it...

Thursday, September 8, 2011

I'm tired

I'm tired... as I type that I have a feeling I don't even know what tired is....  Jake came home from school again today, He called asking to be picked up at 8:35, and was asleep by 9:30a.m.. He woke up at 2:40 then went back to bed at 4:00, and didn't wake up again until 7:56p.m....and at 9:47 p.m. he came in to say good night.  What I'm struggling with today is.. he didn't do ANYTHING strenuous yesterday.  After school, I picked him up and went to the doctor, we came home, ate dinner, he played a video game and went to bed. So Why? Why is he so exhausted?

I called Boston today on my lunch break. They want to talk to the doctor down here, to see about upping Jake's medicine to help alleviate the chest pain. They did tell me that the genetic testing came back negative, which just means they were unable to pinpoint the gene. It only has a 40% success rate, so were weren't expecting much. 

I'm having a hard time dealing with the fact that I'm tired.... but not as tired as my 19 year old son...

life goes on!

 Being we are going to Boston in 19 days,  the cardiologist  didn't want to put Jake through more test that the doctors in Boston will surely repeated up there. He did do an EKG because Jake was having chest pain while we were there.  I'd love to say the test results were fine, or normal... but that's not the case.  Jake is an anomaly. The nurse said she was getting Jake's file ready to send in for a case study.  The doctor suggested we call Boston and let them know Jake is having chest pains and suggested that they do a Cardiac catheterization while we are up there. He said the chest pains will not kill him, but we don't want to ignore them either. He said the pain is probably from the lack of oxygen going to his heart.  He said it's best to have Jake rest so his muscles can relax, hopefully alleviating the pressure. 
     Hmm... let me get this straight.... Jake is an anomaly... well that isn't a surprise.  If you know Jake,  he has always been a bit different.... lol... He is such a fun kid. Even through all this crazy stuff, as we sat waiting to see the doctor, he was taking crazy photos with his sisters cellphone. Laughing at what her reaction will be when she discovers it... ( Jenn, you should check your pictures..we love you! and be nice to your brother...)
   Jake is still being really good about eating the right foods. I pack his lunch for him, bless his heart, because you know it isn't cool to bring your lunch in high school ! But you know what, he is surviving... life goes on... day by day.. we are surviving... living with this.... and don't get me wrong it still sucks... but today the suckiness isn't so bad.


Friday, September 2, 2011


Funny how ironic some things are... I can't sleep and it seems Jake can't stay awake...
  Wednesday was open house at the high school. We walked from class to class to meet all Jake's teachers. While we met Jennifer's teachers, Jake stayed in one class to finish a test ( yes... while wearing his cap & gown, It gives him motivation) Before we left he started feeling some pressure in his chest. So when we got home about 8:30  he went right to bed.  He woke up Thursday morning at 6, still complaining of chest pain. He stayed home from school. I called the doctor, they said it's probably nothing, but want to see him on Wednesday ( we won't even go into how annoyed I am over that).  I woke him up at 8 and sent him over to my moms.  He went back to bed at 9:55 and slept until 2:35,  ate lunch and went back to bed around 4:45.  I woke him up for dinner at 8....and was back in bed by 9.... so he was awake for a whopping total of 5 hours...  He usually takes a 3 to 4 hour nap everyday after school. On Wednesday he did not. He helped make brownies before the open house.  Let me just wrap my head around this...my son slept the entire day because he baked brownies and walked around the school?   hmm...,Can I just say something...please...  can I just say I hate this disease...  I do .. I hate it... In my mind I picture myself on the Oprah Winfrey show jumping up and down on her couch saying I hate Hypertrophic Cardiomyopathy.... I know,  not as dramatic as Tom Cruise...
I'm aggravated that I feel helpless. I can't do anything to make it better. We have to pray and wait.  Waiting SUCKS! 
I know he is 19, but when I look at him I still see my little boy...
So as I sit here, wide awake while my little boy sleeps, the song that run through my head is Ironic...this verse in particular ....Well life has a funny way of sneaking up on you...When you think everything's okay and everything's going right....And life has a funny way of helping you out when...You think everything's gone wrong and everything blows up in your face......
well it is ironic isn't it...