Frustrated

   I'm having a hard time dealing with life today.  I just want to cry... and that makes me mad, I feel like I have no right to cry. How can I cry and have a pity party , when I know Wes Leonards' mother would be thrilled to have her son tired but alive....  I know we are the lucky ones. Jake is alive. We are so blessed.  But my heart hurts, I still worry even though I truly believe god has a plan for him.  I just want my little boy better.
    Jacob came home early from school on Wednesday because he was feeling pressure in his chest.  The pressure let up when he stood up but when he laid down if got worse. He took a four hour nap.  I called the Doctor and he said to bring him in. So Thursday we went to in and they did an echocardiogram to see if there was any fluid around his heart.  The doctor came in to look at the images and said, " That is the mother of all septums."  He also tested the gradient again. There was a discrepancy between the gradient they did ( 59mm Hg at Rest)  and they one in Boston ( 30mm Hg) , so they checked it again.  And this time it came up 45mm Hg.  Ok.. So again I'm not a doctor.. but this is what I found... "Left Ventricular Outflow Tract obstruction at rest ( >30mm Hg) is a strong predictor of progression to severe symptoms of heart failure and of death. " So with that.. none of the scores look good.
The doctor told us that normally when a patient has a septum as large as Jake's 36mm ( normal size is between 6-12mm ...so yeah.. three times the size it should be... ) they go right in and gut it out... but because Jake is not having any symptoms they are waiting until it impedes his life... UGGHHHH!  I hate that part. I really don't want him to go through any pain and I know this is a huge major surgery. But I want him better. I want him to have energy. They know it needs to be done.. why wait until he gets worse?  The doctor said that the pressure was just a symptom and keep him updated if he has anymore... Then we will proceed with the myectomy...How do you look for symptoms when there are really no symptoms.. seriously this is the list...  Heck... with this list I need a myectomy... LOL.

Hypertrophic cardiomyopathy symptoms include:

• Shortness of breath, especially during exercise or exertion
• Chest pain, especially during exercise or exertion
• Fainting, especially during exercise or exertion
• Dizziness
• Fatigue
• Heart palpitations — the sensation of rapid, fluttering or pounding heartbeat

He did say he is concerned about Jake's weight gain.  So we are going to start walking the dogs again to get him moving. I think he is afraid to do anything. If his heart rate get to high , the defibrillator will shock him, which will feel similar to being kicked in the chest by a horse.... so yeah I don't blame him for wanting to take it easy.  But he needs to be more active.

  Last night we thought it would be fun to take the kids to the local Monster truck show, except Jake was too tired and didn't want to go.  He stayed home with his grandparents, and we went with Jenn & met Amanda there.  Yeah... and how fun was that? knowing your son is too tired to walk to a bleacher and sit and watch a show.  We ended up leaving early because I was miserable.  I couldn't have a good time worrying about him.