Right before the rug was pulled out from beneath us!

Sunday, October 30, 2011

A piece of his heart!

Jake went to his homecoming dance last night, he was only there for an hour before he called and asked me if I could come get him.  After I picked him up, we talked a bit about the upcoming surgery, he said he wanted to keep the part of his heart that they cut off.  I think he's crazy, but he said," Yeah they can put it in a jar with the liquid stuff.  So one day I can be like.. so, I love you. Here's a  piece of my heart." Silly kid.  Joking is his way of coping.

Saturday, October 29, 2011

What we want?!?

Today, as I was leaving the school, a friend said, "Congratulations!"   I thought..Congratulations? IS she crazy? Does she know that we just bumped the surgery up? They are going to cut open my son's chest .... The look on my face must of shown that I had NO idea what she was talking about. Then she said," You got what you wanted. The surgery sooner. "  What... wait.. that is what we want... I don't know what it is but as soon as I got off the phone yesterday with Boston, confirming the date for the surgery, I have been an emotional mess.  I guess now that we have a date it makes it all so real.
     On Wednesday, I took Jake to the cardiologist and his ankles were starting to swell, which I guess is a sign of poor circulation.  Then, Thursday was a mess, I still can't talk about it, but he was self destructing. The psychiatrist said he believes the lack of oxygen to his brain is beginning to affect his thought process.  So together we decided to call Boston and move ahead with the surgery, instead of waiting until after Jake graduates.
December 8th is the date. It is also my parents anniversary. Jake said he feels good about the date, because God won't take him from us on their anniversary.
So, as I arm myself with knowledge, I try to fight the fears, and remember we want him better... 70% of patients have shown significant improvement in their quality of life after having a myectomy. The success rate for the surgery is 99%.  Cases of reoperation occur primarily in two cases (1) the patient was young at the time of the first procedure or (2) the 1st surgery was done by a doctor with limited experience. Not the case with Jake's doctor. He is a ROCKSTAR.  
So just so I can make sense of it in my head, I want my son better. I know the only chance is for him to have this surgery. And although I know the surgery will cause him great physical pain. I want him to have the surgery, because I want him better.
So, thank you to my friend who reminded me this is what we want.  And I may be stressed, fearful and tearful... but this is going to lead to great things.
Hold Up.... SHENANIGANS.... I call shenanigans...
Can I call Shenanigans on myself ? This all sounds good and it's what I want to be feeling...  I want to be brave, truly I do.  But I'm scared beyond belief... I'm still a mom... just a mom picturing my little boy laying on the hospital bed, intubated, slathered with iodine, covered in bandages, punctured through his chest, multicolored fluids trickling through tubes in and out of his body...It so hard to fight the tears when that is what I picture.
I know.. I know..  Stupid teacher... Stop researching...

Thursday, October 20, 2011

My heart is broken

The hardest part of this stupid  disease is the depression that come with it.  Tonight I sat helpless as I watched my little boy self destruct and there was NOTHING I could do to stop it. My son needs prayers... I need prayers... I'm just not ready to talk about it...I'm not sure if I'll ever be ready to talk about it....  but if you could just say a prayer for my son I would truly appreciate it.

Thursday, October 13, 2011


 I think someone should invent a stressOmeter that needs to be connected to the freezer door...It should measure your heart rate and if it is too high.. it should beep and go off and say some clever line like... step away from the ice cream.... Or Stress Eater Alert!  If I have learned one thing through this ordeal it is that I am a stress eater.  I had lost about 40 lbs before Jake was diagnosed and since April have put it all back on. Stupid Ice cream...
Why would I need Ice cream?  Let me tell you a little story about why I need Ice cream in my life...  It was the beginning of my planning time, when my cell phone rang... I instantly picked it up when I saw it was my mother calling. In a frantic voice, she informed me that the school nurse had called and Jake's blood pressure was really low and they were VERY concerned. So I dropped everything, and started to run out the door. I was so flustered I couldn't even spit out what was happening to others who were concerned. As I  ran out of the front office my shoe started to fall off. So I kicked both shoes off, and still running, I bent down to scoop them up off the ground, just as I did this my computer bag, slipped off my shoulder falling forward causing me to become top heavy.... YEP... you guessed it.. down I went.... knees down .. bottom up ... skirt flying up over my head...white panties for all to see..  When I landed, I quickly turned to look for the audience expecting to hear applause or see score cards because that landing deserved a 10, I tell you... However, my top heavy, panty showing tumble went unnoticed... So I quickly gathered my scattered belongings and ran to the car... because I had to get to Jake. I arrive at the school, ran to the clinic to see the clinic lady casually sitting behind the desk, I told her who I was and why I was there, she hollered for Jake, " Your mom's here" He strolls out, just fine. He had a little bit of chest pain,  possibly caused by a stressful day at school, and when they took his blood pressure it was low.  His medicine makes his blood pressure low. So I took him home and let him rest like the doctor advised, then after eating TWO bowls of Publix Chocolate Trinity ice cream, I headed back to school.  As I entered one teacher's classroom she looked at me and asked what is that on your sweater. I looked down and realized I had grass all over me... from my tumble... Can you imagine what the clinic lady must of thought? I must roll around in the grass all day...  Seriously we weren't talking a strand or two ... covered in grass.  I chuckle even more now.. because as I got out of the van to go in the school.. I couldn't find one of my shoes. I had thrown them in the van as I jumped in... and through my slow and steady perfect speed limit driving,  one of the shoes had fallen on the other side between the door and the seat. So I got out of the  car with only one shoe on .. and a lady getting into her car said and I quote, " I think you lost something" Now at the time I assumed she meant my shoe... Now I think back...looking at the whole grass covered, one shoe wearing, crazy worried mother picture, she might have been talking about my mind.
Overall Jake's been doing ok.  He is just trying to get through each day.  As we prepared for Amanda's bridal shower, I had Jake move two boxes from the office to the shed, he looked exhausted so I told him to take a break. He laid down and fell asleep at  6:30 and slept through until the next morning.
Stupid Ice Cream.... sounds good right now, I think I'll have a bowl...or two.