Right before the rug was pulled out from beneath us!

Thursday, May 26, 2011

Playing the waiting game?

A large number of people diagnosed with HCM,  are diagnosed with depression before they are diagnosed with HCM.  Jake has been battling depression, he has his good days and his bad days.  Saturday was a bad day.  He was in a mood... and repeatedly swung his arms over his head. Because of the placement of the lead wire in the ICD,  this is frowned upon.  He could pull the lead wire out, and repetitive movement could wear the wire out.
I honestly feel defeated sometimes, everything we are doing to take a few steps forward, and in a minute of a fit of depression,  he could of destroyed it.  
  On Monday, Jake came home early from school because he was having chest pains.  The doctor did an EKG and sent us for x-rays to make sure the lead wire was still intact.  I stressed my aggravation to the doctor, "why can't they just do the myectomy" I mean seriously, they said they usually do a myectomy when someones septum is as large as Jake's but because he is showing no symptoms they want to wait... seriously why? Our doctor  explained  that  right now Jake is living a normal life. Yeah he is limited to no strenuous activities, and he is tired all the time. BUT.... A myectomy is a serious surgery, there can be complications, he could have a stroke while on the table.  So ok. now I get it... I am still frustrated. I truly don't believe that is the "plan" in store for Jake. But I will wait patiently and not push the issue until Jake shows more symptoms.  I sit and wait .... waiting for my son to get worse.  They call it the waiting game...  all I can say is THIS GAME SUCKS!
    Jacob came home after school on Wednesday and took a nap. He slept until 7p.m. Woke up ate dinner and went back to bed about 9:30. 

Thursday, May 19, 2011

Great News!

Jennifer's MRI was yesterday. She had a little complication with a defective IV, which popped off as they injected the contrast. But she did awesome, and was so brave. (She seriously has a fear of needles.) I had no idea how worried I really was, until the cardiologist said that her septum is within NORMAL range. YEAH! He showed me the images, and the tears started coming. I can't even describe the relief I feel.  Her arm is pretty sorry today, but she is just fine!
   On Tuesday, We went to have the ICD read. It seriously took about five minutes.  It was our first time having it read in the office, I  didn't know what to expect. It was quick and painless, the ICD is working fine. We get it checked again in three months. 
   After a scab fell off, Jake noticed a string hanging from the incision. He went to pull it off and realized it was attached. So they took care of that on Tuesday also, cutting off Jake's "pull string".
He is doing pretty good. His spirits are up, and he felt well enough to attend Jenn's JROTC award night. He even wants to start walking the dogs again. So tonight,  we will give it a try.    :-)

Saturday, May 14, 2011


   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.

Tuesday, May 10, 2011

Jenni's appointment is scheduled!

Busy as a bee... (where does that come from? Bees never look too busy to me... )I'm overwhelmed. I barely have my head above water....  I have a lot on my mind and a busy schedule... lots of appointments coming up. Yesterday, I spent my planning period on the phone making doctor appointments, and YES,  I finally got through to Shands,(yeah) Jenni's appointment is on the 18th.  Jake had an appointment with the psychiatrist yesterday. Jenn & I had a few things we had to pick up at the store , so we didn't get home until close to 9. As I said busy... So this morning, as I showered, in my mind I was going through all the things I need to get done today before Jake's dentist appointment. I had just squirted the conditioner in my hair as Bill, my husband, came in to kiss me goodbye.  He left and I jumped out of the shower, got ready for work, threw a load of clothes in the washer, picked out extra jewelry (because my k students are learning the letter J), and grabbed a yogurt for lunch.  As I was pulling into the school parking lot, I ran my fingers through my hair and that's when I felt the goo.... WTH is that????  Conditioner....I never washed the conditioner out of my hair. What to do? Oh what to do??? So picture me washing my hair out in the sink in the kindergarten classroom and drying it with paper towels. Then I had to walk out to my car to get my hair brush. Oh My... What a way to start the day! LOL!
   We received Jake's Medical Alert bracelet in the mail on Monday. Jake was SO excited he kissed me... LOL... We spent a lot of time looking for one he thought was cool enough. I mean if he has to wear it all the time. I want it to be something he likes. The funny thing was I wasn't sure what to have engraved on it. The websites didn't specify what the norm is. So being the Rebel I am, I took caution to the wind (LOL) and I  had "Hypertrophic Cardiomyopathy  St. Jude ICD" engraved on the bracelet.  That way if something happens to him, they will know about the ICD, and the brand in case they need to read it.
   We had to reschedule Jake's dentist appointment today, because he forgot to take his antibiotic.  UGGH!  Yeah, he remembered as we got out of the car to walk into the office.  So, I have to take more time off work, which hasn't really been a problem, except I'm running out of sick time.  I am so very thankful to have such an awesome boss.  Seriously,  I left early today, have to leave early Thursday for another dentist appointment, Tuesday I'm taking a half day because Jake needs to get his ICD read,  Wednesday is Jenni's MRI and then the dental appointment we had to reschedule from today is on the 31st. 
   Jake has been feeling good.  He still takes the occasional nap, but nothing like the last post when he slept all day.  He is doing the usual chores around the house, but not much else.

Wednesday, May 4, 2011

Not feeling well

I read a quote that kind of stuck with me, "Every evening I turn my worries over to God. He's going to be up all night anyway"` Mary C. Crowley.
I try my best but tonight I'm sure I'll lay awake worrying. Jake stayed home from school because he wasn't feeling well.  He slept all day.  That worries me a lot. He said he was bored so he slept. I'm going to keep an eye on it. The new medicine they put him on is not suppose to drain the energy from him. So tonight I worry because he is not feeling well, sleeping to much and looks pale. 

I am frustrated with Shands or I guess really at myself for not being more patient. But I still haven't heard back about Jennifer's MRI.  In the morning, I will call back yet again to see if I can get some answers.