So Proud of Jake!

We drove down to Bonita Springs, in preparation to give an award to Larry Smith from Vital Flight.  Vital Flight coordinates FREE air transportation for individuals with compassionate, humanitarian or medical needs.  These wonderful pilots donate their time, and aircraft expenses including fuel and landing fees to help people in need.  And Yes, that was us in April...when I was hit with the news that we had to go to Boston and had to go by Monday....  I was so overwhelmed... But my sister ( did I mention my sister is A ROCKSTAR) called  Larry Smith.  He is our go to guy, and he is so very humble. He is amazing. ( Seriously, I was plotting a way to duct tape him, throw him in my trunk and bring him home with me, I just love him that much...LOL) He made it possible for us to get to Boston. Usually, they need a bit more time, but they still pulled through for us.  Jake was honored to give Mr. Smith an award to thank him for going above and beyond. And I have to say I'm very proud of my little man. He did a great job.  Before Jake gave the award , there was a wonderful slide show, My sister & I worked on it a little but then one of my sister's coworkers took it & and ran... and what an amazing job, he did.  I am having difficulties posting the slide show and video on the blog. So until I can figure it out, You'll just have to take my word for it.  Way to go Jake. 

   We really had an amazing time. Again, I must say God is so good. I was able to relax and enjoy the amazing view from our room. You know he planned the timing of finding out we had to go to Boston ( I was so stressed, you can tell by the bags under my eyes, I've been told)  and then hooking me up with this amazing room with an incredible view at no out of pocket cost to us. So we can focus our monetary efforts on getting Jake back to Boston.  I know that he will continue to lead us in the right direction.  Mr. Smith has already told me to call vital flight and start making the arrangements for our flight up there ( I told you he was amazing, If only I could of found that duct tape) ...  We are definitely tightening our belts with our spending, using coupons, and going out less...I've have already wiped out most of my savings and retirement..but you know that's not important to me.... it never has been... Having a happy, healthy family is all that matters... and

God is leading us on that path...  

I have been blessed with the most amazing husband, and wonderful children... and the best friends... so now we just have to work on the healthy part... and we are close... oh so close...  we will get there... So through my moments of insanity when I just can't understand why....  I look at all I have to be grateful for.... and realize I am so very blessed!

   

    

Going back to Boston

   The doctors have been saying Jake needs to be active because he is gaining a bit of weight.  We have tried to get him to walk the dogs... no interest. We tried swimming... not for him. So we made an appointment with a trainer at the YMCA.  The appointment was at 7.  He worked out with the trainer who showed him things he could do, even with his limitation until about 7:45. Then came home and slept until 3 o'clock in the afternoon.  And then went to bed and slept throughout the night..  We tried it again on Friday,  he worked out for a little less than a half hour.  We got home at 10, and he slept.  I woke him up at 4:30.  I called the doctor... fatigue after exertion is a sign after all.... So we went to see the cardiologist this morning...and He is concerned as well.....  He said we should pull the plug on waiting and Call Boston.  So after our second Doctor appointment today...  I called the doctor in Boston, and they said our cardiologist had already called and Dr. Maron wants to see Jake to do a stress echo, and he wants him to see another doctor while we are up there.. but I forgot to ask who the other doctor was and why we need to see him...  ( so that is on my to do list..) Our cardiologist said there is a test they can do with a catheter that will tell exactly what the gradient is. This will tell if he needs the surgery now  or if we can wait.  The office manager made our appointment for the next available slot... August 23rd.
 Ok ... I realize this sounds insane.... I have been a mess all day. I  CALLED the doctor... because I was concerned.... Why is it a shock that they want us to go to Boston?  I guess deep down I was hoping I was just being a paranoid mother. Like when he was little and I took him to the doctor for every little bump or bruise.. or tug at the ear.. fearful of an ear infection...  I thought I was just being over protective and thought they'd say....  "No , not time yet"... AND I'm shocked that I feel like that because I 've been going insane wondering why they are waiting and not just jumping in and doing they myectomy now? They know it needs to be done!  So yeah! INSANE describes my emotions right now....
    And just to be clear.. at this time we do not have the myectomy scheduled.... we are only going up to have more tests done to see if it is time to proceed with the myectomy... I do not know if they decide it is time... if they will do it while we are there.. or if they will send us home with a date..  I really just don't know.... I'm not sure what plan God has in store for us, and I am trying to have faith that although I may not be able to picture the plan... there is one.  I just don't understand how getting an appointment after school is back in session works in the plan... when I have the whole summer off? I know,  I know.. I can't see the big picture from were I sit.. and I am sure it will all work out in the end.  Just have faith...
So Now,  I have 55 days to stress, worry and research about everything. Jacob needs to continue to exercise. So I was thinking... What if he works out at night???? Will he just get a better night sleep,  and wake up at a descent time in the morning.  This might be a great idea! Ding Ding Ding.. we have a winner!  ... well I hope it is a winner...  We will try it tomorrow...

Don't Stop Believing!

Ok Sing it with me... "Some will win, some will lose ...Some were born to sing the blues ...Oh, the movie never ends .....It goes on and on and on and on...."  Because Jake came out of surgery singing Don't Stop Believing, when I heard Journey was coming to town in Septemeber.... I HAD to buy tickets.... Right? How could I not? 

My goal is to keep Jake busy this summer. Get him out of the house, up and moving. He still takes a nap every day .. sometime two.... Today he seriously slept most of the day...He is also still gaining weight... umm...yeah, NOT GOOD! Tonight we got him in the pool and tried to persuade him into doing water aerobics....but yeah .. he wasn't feeling it...  He did stay moving, so it's a start.

I love the old saying laughter is the best medicine. It got me thinking, ( yes sometimes, even , i do)  so we took Jake to his first comedy club show at Sidesplitters.  He thought it was hilarious and laughed throughout the entire show.  He has been staying busy going to his friend's houses... and he has only had one rough day dealing with the depression. I have to say I am really impressed with Jake's friends. Lee, Clayton, Ryne, Taylor and Joey are just amazing, great kids that have really been there for Jake to help him through all of this.

For Jennifer's 16th birthday we went to Disney Quest. I worried that it would be too much for Jake.  I thought for sure he would be too exhausted to enjoy the day or want to leave so he could take a nap.  However ... I am very happy to report that Jake did awesome.  He went up and down the stairs with no problem at all, no shortness of breath.... WOOHOO! We walked around Downtown Disney. The kids made light sabers at Once Upon a Toy.  (as soon as I typed that a deep voice in the back of my head was saying... may the FORCE be with you! ... you can admit it.. you thought it too! LOL ) The only time he let on that he was tired was when we stopped for lunch and he asked Jenn to fill his drink so he didn't have to get up... and he zonked out on the ride home.
 

Next week,  Jake will be presenting an award to the man who made it possible for us to fly to Boston. We are working on a slide show for the presentation. Lots to look forward to.  Keeping our heads held high and enjoying life, because life is short... and unpredictable.

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. 

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.    :-)

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.

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.

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.

Check Up!

Yesterday,  Jake felt well enough to return to school.  We went to the cardiologist to check the incision. It looks good.  He can take a shower now, and no longer needs to keep it bandaged up.  He gave us a script to have Jennifer's MRI done. He suggested Shands.  I will call today to get that appointment set up. We have an appointment to have the ICD read on May 17th and don't have to return to the cardiologist for 6 months. YEAH!  However, if he becomes symptomatic, we need to go in right away and get the ball rolling for the myectomy.  We have appointments with the dentist, psychiatrist and councilor coming up, so we are staying busy. But all is well and we can breathe!  Getting use to the life adjustments of low sodium and no caffeine are a struggle, but he is making awesome choices with little to no nagging.  I can honestly say, I can feel the weight lift off my chest and I can breathe easy, knowing life is going to continue. I am amazed at these wonderful doctors who spend so much time with us explaining everything, making sure we understand what is happening. Seriously yesterday, our doctor spent an hour with us one on one. He is awesome.  I truly appreciate all of your prayers and kind words throughout this challenging time for my family. Thank you, seriously, just doesn't quite do it justice, but it needs to be said... Thank you for all your prayers.

Discharged Today!

Last night, as my little boy lay in the hospital bed, uncomfortable and unable to sleep he said," Thank you"... I said," For what?" He said," For researching so much and getting me up here, so I can get better." I said," Honey, it's what mom's do."  He replied with , "Not every mom." Yeah, I cried.

Before we left the hospital, they went over EVERYTHING! I'm so glad they were so thorough. The biggest thing I'm concerned with is that they said to WATCH FOR INFECTION. They gave him an antibiotic, he needs to take four times a day. Infection means trouble... So we have to keep it clean....Also before we left the hospital,  the incision had a small little patch of red blood, that the nurse was concerned with. She said it should of looked darker. She said to keep an eye on it.
And then they went over and over all the information to  make sure we got it. As a teacher, I know I can't just say something once and expect a student to get it. I have to teach it in different ways exposing a student to the same information in different ways. That is what we got today. It was like every nurse and doctor we spoke with explained it to us again.... at first I thought it was a little silly...then the teacher side of me kicked in and I thought OMG... They are teaching us how to live with an ICD.

For the next six weeks Jake can not lift more than 5 pounds with his left arm. They stressed the importance of following the activity restrictions because of placement of the leads from the ICD.  NO repetitive over the head arm movement, because they put the lead in a different vein than usual, so it has a bit more of a bend which may cause it to get worn faster.  Jake will need to wear a medic-alert bracelet or necklace. He will also need to carry a card with him to prove he has an ICD. They gave him a temporary card today and the permenent card will come in about 6 to 8 weeks.  He needs to stay away from large electrical motors, strong magnetism and welding equipment.  His ICD will set off alarms in a metal detector, so he'll need to be patted down at the airport, ( which is why he needs the card to prove he has an ICD) and no he is NOT as excited as you'd think he'd be about that... Also, he needs to avoid the hand held wands due to magnets.
  He can use a cell phone on the opposite ear of the ICD, and he can not carry a cell phone in his breast pocket ( The nurses suggested 6 inches away from the incision is a safe distance). The instruction booklet says to avoid holding the following items closer than necessary to the implant: hand held applainces with motors, such as hair drawers and shavers,  light shop equipment such as drills, table saws, etc.  and transmitters for radio-controlled equipment or toys.
Certain tests and procedures can interfere with his ICD so he will not be able to have , electrocautery, Lithotrispy, MRI's,  Radiation therapy, Radiofrequency ablation, and he should not use a TENS unit.
Also they are recommending a healhty heart diet- oh boy this could be the worst part for Jake- low in fat, low in saturated fat and cholesterol, moderate calories and sodium, and high in fiber.
  We will see Dr. Mathews next Thursday, then in six weeks, we will need to see an electrophysiologist who will  moniter the ICD, and check it's battery life and read the info from it... They said something about being able to the send info through a land line phone... but I'll learn more about that after our first visit to the electrophysiologist. Today before we were released from the hospital, we met with an electrophysiologist, he read the ICD and said it is set to do a shock therapy if his heart rate reaches 230 beeps per minute and the battery is projected to last 9 years. He also explained that if there is something wrong with the ICD it will vibrate letting Jake know that something is not right. So he tested it, Jake said it felt like a cell phone on vibrate inside his chest. If it goes off we have to call the electrophysiologist's office.
Dr. Marons office called and said the next available appointment for an MRI is Monday... We fly home Friday... So we will get Jenn's MRI done in Florida.
So how is the little romeo doing?  He's sleeping. A few minutes ago he gasped as he was sleeping, Jenn & I jumped to his side, he looked at us like we were crazy, scratched his chin and went back to sleep. He sleeps until it's time to eat. Then and only then can I get him out of the room, but if you know Jake he LOVES food... so that makes sense.
So the tough little guy, refused pain meds. I am concerned about the flight home tomorrow. What if there is turbulence? I'm paranoid as we walk down the street, trying to stand in front of him .. running block... making sure no one bumps into him. I can't wait to get home to our somewhat normal life.

Surgery went well

What a day! We met with the surgeon at 9, Jake commented that he really wanted pictures of the procedure, so the doctor asked a nurse if he had his cell phone handy. I handed the nurse my camera and aked if he could use my camera. The doctor asked, "You trust us with your camera?" Jake said," She trusts you with my heart but not her camera..." Sharp as a tack...and not nervous at all... They took him back around 9:30.... and told us it would be about 2 1/2 hours before we would hear anything.

At 11:19, Dr. Link called and said everything went well, they tested the device and it did what it was suppose to do. So everything was good. And that's when it hit.... the tears wouldn't stop... It was like I could finally breathe.
They wheeled him out about 30 minutes later and he tried to make a joke and then busted out in song, " Just a small town girl, living in a lonely world" Then he proceeded to tell all the nurses he loved them, and tried to get their phone numbers. The nurses were calling him Romeo.
He feels good , his pain is only about a 3 right now. They just came in and  gave him an antibiotic to prevent infection. Right now.. all is good.... Thank you Lord, for answering our prayers.
Jake wanted to look at the incision right away but the nurse suggested he leave it alone until tomorrow. After that it needs to be changed every day. No showers for a week, sponge baths only.  No touching the incision. Only small movement of the arm for a couple days. We will have to see Dr. Mathews in a week , and again after 6 weeks. Then there is another doctor we have to see every 3 months. Then we will have to have the battery changed in the ICD  about every 7 years.  I'm trying to remember eveything.
Dr. Link stopped in after the surgery and checked out the pictures. He thought it was a neat idea and was proud of the photos he took.  Dr. Maron stopped in to check on Jake, and let us know that they are trying to get Jenn in for the MRI up here on Friday, if for some reason they can't fit her in, we will have to have it done in Florida.
I am staying the night here in the hospital with him... 

Meeting with the surgeon

It's really hard to believe something so small is going to keep Jake alive. The ICD fits in the palm of my hand. Technology is amazing. We met with the surgeon today, Dr. Mark Link. He passed an ICD around for us to see.  He explained it will be placed below Jake's collar bone in between the layer of fat and muscle. He also said you will be able to feel it under the skin and although we all want to feel it we should wait about four weeks before we actually do....  I can picture Jake walking around saying , " Hey wanna feel my box." He also explained that Jake will be able to be more active than he has been. As a rule of thumb as long as he can talk while he is doing the activity, he can do it.  NO burst of energy, though.

  We were thinking we might go on a tour ride to see the cool historical things around but Jake is just too exhausted. He took a four hour nap after lunch.
  The funny thing is, being a Florida girl, I never had the desire to visit Boston, but now, I'd like to come back, when everyone is healthy and see a show, and check out the historical sites. Jake thinks Boston is cool. He likes that you can walk to everything. I know we aren't up here for pleasure, but I beleive in making the most of the situation. I hate that he is too exhausted to experience this place.
I don't have to be such a meanie anymore, he is quickly adjusting to the lower sodium diet, and making good choices on his own.  Because he can not eat anything after midnight, he wanted a "good" dinner. So we went to a restaurant close to the hotel called RockBottom.  It was very good.
   Everyone keeps asking how I am holding up. Every cloud has a silver lining... It stinks that Jake has to have surgery but honestly I am relieved. I know it sounds morbid. My little boy is having surgery, and I'm relieved. But right now if he does anything strenuous he could  die, after tomorrow that is not going to be a concern. He may get shocked, but he won't die. So, today, I'm relieved . Tomorrow I will be on pins and needles, a nervous wreck. It won't be pretty.  We have to be at the hospital at 9 a.m. where they will prep him for surgery. The surgery will take about 1 1/2 to 2 1/2 hours.

Test Results

We spent the day at the hospital having tests done. First, Jake had an echocardiogram, the doctor briefly stopped in after he looked at the results and decided not to do the stress echocardiography due to the risk and it wouldn't give us much more info anyways. The next test took a little longer because Jake had some kind of reaction to the contrast dye, they had to stop the test take his bp and give him oxygen before finishing the test. Jenn had her echo while Jake was still having the MRI.
So... the results... Jake has 3 out of the 5 indicators for being at risk for sudden death.
 The other two indicators are a test they did not perform on him, and family history which is imcomplete. They strongly recommend the Implantable cardioverter defibrillator. He will have it implanted Wednesday. The defibrillator will help his heart continue to beat, shocking it into the right rhythm, if needed. He has some obstruction but doesn't need the myectomy yet. We have to keep an eye on it.

I can't even describe the feeling I had when we saw the MRI scans showing the actual size of the septum thickness.  I kept trying to picture it using the pictures from the internet, but actually seeing it, slice by slice and see the thickeness completely through the heart, I still can't describe it.  The doctor spent a long time with us explaining everything to us, making sure all our questions were answered.
 Tomorrow,we are meeting with the doctor who will actually implant the defibrillator on Wednesday. Even though he will have the defibrillator he still will have limited activities. If he does strenuous activities, the defribrillator will shock him which is not pleasant.
Jenn's wall thickness was borderline. The doctor would like to do an MRI to get a more detailed picture of the thickness to see if she has HCM or not.  He is going to see if we can have it done while we are up here. She is NOT excited about it, she hates needles.
   The beta blockers Jake is on could be the reason he is sleeping all the time, so we are going to switch that but not until after the defibrillator is implanted. AND they drew blood today for genetic testing , we won't know the results of that for a couple months but hopefully if it pinpoints the mutated gene, it will be easier to test other family members.
 Jacob is doing fine. He likes the doctor and his special hand shake. He doesn't seem anxious about the surgery. He is his normal everyday self, picking on his sister every chance he gets. The only thing that seems to be bothering him is me.... because I keep taking pictures of everything, and I'm enforcing the  2000mg daily sodium intake.

Boston

Jake enjoyed his first experience flying, He looked out the window and pointed out lighthouses on the way. Jenni on the other hand, decided planes are not her friend. We landed safely, Jake and Jenni experienced their first ride in a taxi, and then we ate at a resturant called Jacob Wirth for lunch. Jake's request because of the name. Jake has been sleeping since we checked into the room.  It's funny that he LOVES history. Here we are in Boston, so close to so many historical sites and he isn't well enough to visit them. He is 18. He should be out seeing the sites... not sleeping.    Bill & Jenni have gone for a walk. They are looking for something for dinner.It is a struggle to find take out low in sodium. The Hotel is beautiful however, it does not have a refrigerator. So it looks like we will be eating out a lot.  I did bring Jake some snacks for the plane trip. He was not impressed with my low sodium choices, but he ate them.
I'm trying to stay sane.  Right now, as he sleeps, and Jenni & Bill are out for a walk, I am here with nothing else to do but think of why we are here. I'm scared, anxious, and thankful.  I just want them to put the ICD in so I won't have to worry so much. I jokingly say it is his ICD security blanket. Really I think it is mine. I know that little box is going to keep his heart beating. I can't wait for it to be implanted. However, I don't want to think about the discomfort he will be in after.
I know we are here to start the road to him getting better... so that is what I will focus on. Getting my little boy better.

Better Than He Was Before

 
In my head I keep hearing,” Gentlemen, we can rebuild him.  We have the technology. We have the capability to build the world’s first bionic man.  Jacob will be that man.  Better than he was before. Better, stronger, faster.”  Ok maybe not the first and definitely not faster, but his heart will be better and stronger…

We are flying to Boston in the morning. The first appointment is at 9 am Monday morning, Jake will have an Echocardiogram,  an MRI, and a Stress Echocardiography and Jenni is scheduled for a resting Echogradiogram.... all before our visit with the doctor at 12:30. On Tuesday, we have a consult with the doctor implanting the defibrillator.  Wednesday is the day we all get to breathe. It is the day Jake will get his little ICD security blanket. (The ICD will monitor the heart rhythm, identify abnormal heart rhythms and determine the appropriate therapy or shock to return his heartbeat to a normal rhythm.) Hopefully Jake will be released on Thursday and we can fly home Friday. 

It amazes me that this little box with some wires attached are going to be able to keep my little boys heart beating. It's hard to look at him and realize he could be taken from us. He looks so healthy. Even now that I know how sick his heart is, the only clue you'd have is how tired he is. He sleeps a lot. It is overwhelming to think of what could happened. We still have to make it to Wednesday. I have faith in God that everything will be work out. 

 I have to say I am AMAZED at the outpour of love, and support from family and friends. On Thursday, after the doctor had called, I called my sister, the next thing I knew she had  arranged our hotel stay and was able to get our airfare taken care of. I can’t even begin to tell you what a relief that was.  The last three days have been so crazy, and emotional.  That was one less huge thing I had to worry about. The hotel is right across the street from the hospital. 

Yesterday someone said to my husband,” Why Boston?” We have some good Cardiac Hospitals here in Florida.”  And yes we do, but when the CEO & founder of The Hypertrophic Cardiomyopathy  Association says,” You need to go to Boston.” You go to Boston. Period.  Please don't judge us for our choices, the way I see it, You don’t go looking for a discount plan when it’s your son’s heart. You go where the experts tell you to go. If it were your child what would you do?

Jake is in good spirits. He is not enjoying the 2000mg sodium limit on his daily food intake. Some friends and family stop by to wish Jake well in Boston, bringing him Superman under garments for his stay in the hospital. Thank you to all of you who are praying.