my funny kid

 I was just thinking about before Jake went in for surgery, He was a bit nervous and they gave him a little something to calm his nerves. He started singing   ....Take another piece of my heart now baby... and he wanted to play operation.... He really is a funny kid...
Yesterday before he was released Dr. Maron had stopped by and said Jake was becoming a legend because Noreen was telling everyone about how minutes after they removed the breathing tube he was singing show tunes and Boston's Foreplay/ Long Time...
"It's been such a long time
I think I should be goin', yeah
And time doesn't wait for me, it keeps on rollin'
Sail on, on a distant highway
I've got to keep on chasin' a dream
I've gotta be on my way" Noreen said if she knew anything about you-tube or how to record video from her phone Jake would totally be on You Tube...   They commented on his positive attitude....
Even now, he is in great spirits.  I know he is in pain, especially when he coughs... but he is still cracking jokes.  I can't wait for him to feel better so he can enjoy life...That's my dream.... He has been so tired for so long...I can't wait to see him excited about going places or wanting to do things...As he lays there in pain,  I just remind him ... tomorrow is going to be a little better... and before too long he won't feel any pain...  and I am SO looking forward to that day...and you know what.... he is going to be ok.. you know why? because I purposely handed him his batman boxers this morning as he got dressed...secretly channeling his batman powers...no seriously, I know because we have a much higher power than batman on our side...

   The hotel we are staying in has a free shuttle to and from the hospital but I decided to call a taxi to get Jake to the hotel, because I thought it would be easier to get in the cab than the shuttle van.  The cab driver did a great job, so I'm not sure why but Jake got sick.  In the elevator he said I think I'm going to be sick... So as the dooor opened he said run.. so here my chunky little body is halling booty down the hallway to the last room... ( really they could of given us a closer room)  to unlock the door and grab a garbage can and get it back to him.  Well, my short little legs failed me... because as I turned to run back... Jake was leaning forwards with chunks at his feet.... uggh... I got him in the room and called the front desk. Then took care of my little man...  I got him settled in, then had to run across the street to get his prescriptions filled. As I opened the door what do I see, the janitor cleaning the puke... as I walked passed him I slipped him $5... and apologized...  I felt SO bad. Poor guy... Jake hasn't thrown up since so it must of been the driver... All I can say is this whole thing has been an experience.
Anyhow, last night was rough... he had a really hard time getting comfortable and by the time he was, my alarm was going off to give him his meds.  So it felt like we were awake every two hours.  The nurse came by today, she is very nice.  She said everything looks good.  His incision his healing nicely. It is 17cm long.  The nurse also commented about the hotel being in the inner city and I should watch my back if I go out anywhere... are you kidding me?  I've walked across 7 lanes of traffic to walk to  the CVS ( in 43 degree weather)  on several occasions now...  and yes after dark... are you kidding me?  Maybe it's me being a naive, simple, country girl but I'm not nervous... even now.. everyone has been so nice and friendly, ok.. but I will admit... I did head to CVS for a thermometer today before it got dark....

being released

Yeah...as I type this Jake is taking his first shower post op. Yeah...  the nurse came in and gave us the first of our release papers.. 8 prescriptions...  but whatever it takes to get my little man better! What a trooper..  seriously he has been wonderful..  He has maintained a positive attitude throughout the whole thing.
They took the chest tubes out Sunday and the chest wires came out yesterday... funny that I never read anything about the chest wires... I knew nothing about them...  they were attached to his heart with a small coil... almost looks like the coil in a pen but smaller.  anyway when its time to remove them they just pull it very slowly and detach it from the heart and continue pulling slowly right out through the belly.  The first one was a "weird" sensation the second one was a little more painful.  So excited that he is doing well. I was afraid that wouldn't release him today because he was running a slight fever yesterday. But all is clear today...
He is sleeping a lot.. but he needs the rest.. Doesn't have much of an appetite, but I wouldn't either if I had to eat hospital food...

low blood pressure

Jake was not able to get up and walk around yesterday for two reasons, his blood pressure was too low (90/45 )and he has an air leak so they did not take the chest tubes out. So we stayed another night in CTU ( cardiothoracic unit).  I  have to admit I didn't post anything last night about it because I was down... It was hard yesterday seeing the older men who had surgery after Jake, up and walking around. I thought Jake would be healing faster because he has youth on his side.  But I know he will heal in his own time. He will be ok... He was more severe than they were.  So we take it day by day ...  
On a positive note he only has one I.V.  they had to keep it to continue to give him fluid because of his low blood pressure...they gave him two shots of heparin in his stomach, to prevent blood clots. He did eat yesterday, the first day he was not allowed except for ice chips because his stomach was slow... It wasn't making the stomach sounds it should of and they thought he would just throw up. He at ALL of the salmon & potatoes they brought him for dinner... He was hungry but he was too tired to eat. He didn't want me to feed him. He didn't want to feel like a baby. I fed him anyway... He is independent and wants to do everything himself.  Determined...  He did eat a bunch of ice cream, ice chips , and popsicle because his throat was still scratchy from the breathing tube.

   He did feel good enough to jump on facebook for a few minutes yesterday and he watched a movie. He slept the rest of the time.  Heading back to see him soon... without Bill.... He flies home today... 

the day after....

I remember reading a blog about a girl that had a myectomy saying the day after was the absolute worst. I hope and pray her account is correct. The girls writing said it felt like an elephant sitting on her chest.  Jake kind of describes the same thing.  He is in pain now.  Sleeping,  sitting in a recliner... Earlier he was able to blow the ball blowy thing that measure the volume of air in his lunges to 2000ml... now only 500ml... It hurts too much.  The nurses said that's normal. His blood pressure is also too low for them allow him to walk around..  otherwise they were hoping to get him up for a bit.
Noreen stopped by tonight and said yesterday, literally one minute after they pulled the breathing tube out he was singing show tunes, telling everyone how fabulous they were, yelling Hi out to the nurses station. She said that was a first in all her years of nursing. She chuckled over it. She thinks Jake is pretty amazing.
   Noreen also introduced us to the man who had the myectomy surgery in the afternoon yesterday. His wife and I chatted for a bit. She is very nice. We are actually staying at the same hotel and they were kind enough to give us a ride back ( the shuttle driver makes me car sick).
Slowly, they are taking him off all the wires that he is attached to.. I can't even count how many.. they are all wrapped around each other in a maze.  He still has thick tubes in his lunges. they are about as the size of a garden hose.  No wonder it hurts to breath that stupid bally thing.

   As I sit here and watch my brave little man  hooked up to all these wires, I'd give anything to trade places with him and take away his pain. Not once has this kid said, "why me..."  He is pretty amazing...

Surgery

This picture was taken before he went in.  They put three I.V.'s in before the surgery. one in each arm, and on in his neck. The one in his left arm needed to be in an artery, to measure his blood pressure through out the surgery.  The surgery was scheduled for 8:30.  They have a screen in the waiting room to update the family members with how the surgery is going.  You are given a number, so you check the status with that number on the board.  Shortly after arriving in the waiting room the monitor changed the surgery start time to 9:40....  However, a little after 9a.m. Dr. Maron stopped in to tell me they had started the surgery, and everything was going well.  I did go down stairs and grabbed a cup of coffee and a donut... ( and yes I ate it.. I am after all a stress eater). As I waited I tried super hard not to focus on the fact that my sons heart wasn't beating on it's own or that a machine was breathing for him because his lunges were deflated. I passed time chatting with another couple who also had a 19 year old son having surgery for totally separate reasons but equally as concerning.  I also kept busy texting friends and family.  I can't even tell you how much I appreciate all the prayers.  * Note to anyone having to spend the day hospital, take your phone charger with you.  

 Noreen, the nurse practitioner stopped by to keep me company for a while.  Then, Dr. Maron came out 3/4 way through the surgery to tell us they were closing him up, everything looked great and that Dr. Rastegar would be out to speak with us when they had finished up.  What a relief, I sat and cried for a minute before I grabbed my phone to email Bill, but before I ever finished the message, he was there. He actually passed Dr. Maron in the hall and he told Bill where to find me. Before we knew it , Dr. Rastegar came out and told us how great the procedure went. 

Dr. Rastegar told us to give them about 30 minutes before we headed up to see him... In actuality it was about an hour before they let us see him, and we only got to see him for five minutes with the breathing tube still down his throat and wires everywhere... but he is perfect...

The nurses told us to leave,  Which  was harder than I thought it would be... I fought tears... I didn't want him to wake up and not have us there but the nurses wouldn't let us back anyways... so Bill and I went back to the hotel and stocked the hotel room with food so when he comes back to the hotel, I won't have to leave his side. then the nurse called and said he was awake and singing.  So in 11 minutes we were back to the hospital waiting to see him.... However we had to wait an hour and 45 minutes before they finally let us in to see him... But the nurse was right, he was awake, alert, singing and joking, again they wouldn't allow us to stay long, but those few minutes I got seeing him awake were exactly what I needed.. 

morning before the surgery

So, I decided to set the alarm on my cell phone just to be safe.. and although I was awake I am glad I did, because the alarm clock did NOT go off....
Jake is taking a shower,  he has some special soap he is suppose to wash his chest with.  He  is still allowed to take his meds with only a sip of water. Also he was suppose to  use this medicine called Bactroban last night .. It's a nasal ointment  to prevent infection after surgery, but I couldn't get it filled because .... I FORGOT the insurance card...  I know I know.. Who flies to another state for surgery then forgets the insurance cards... The nurse said it was fine and that they would give it to him this morning.. and as for the insurance card.. Bill is flying in this morning he will bring it.
I have this urge to watch Freaky Friday to see what it is they did to switch bodies and see if I can take over Jake's body for the next month...  I'm not sure if I'll have my head on straight to write detailed info.. But I will definitely let you know how the surgery goes.

pre-op

We had to be at the hospital at 10:30 and didn't leave until 5p.m.  Met with a doctor, then was sent for blood work,  ekg and urine test, then an xray, then to meet with the nurse,  anesthesia , and finally Dr. Rastegar.  It's been gloomy and raining here since we landed... makes it harder to look on the bright side when the weather is so gloomy.  But I have faith... I believe... I know he will be all right.  I have to make this short, He is trying to sleep .. we have to get up in five hours to be ready for the surgery. we need to be at the hospital at 6 a.m. Surgery is at 8:30a.m.  It should take 4 to 5 hours, then  it will take 5 to 6 hours for him to wake up . They said I will be able to see him tomorrow but not for long.  Wish I had something witty to say, but truth be told.. I'm a bundle of nerves.  Praying I can be strong for my brave boy tomorrow. Praying the surgery is successful, and praying the meds take away his pain. They said he shouldn't even remember tomorrow.
   I'm afraid to sleep because I'm afraid I set the alarm clock wrong and won't hear it go off or maybe that I know when I fall asleep, before I know it it will be time to cut my little boy open.  UGHH.. I just don't want to see him in that much pain.. and god knows if I could switch places with him I would in a heart beat.
    Today when the anesthesiologist explained about the tube they will insert down his throat because they will have to collapse his lunges... Really... why hadn't I seen that in any thing I've researched. It makes sense.. but i just wasn't expecting that.. I HATE the thought of his heart not beating .. and now he won't be breathing... and in that same thought of how much I hate this I have to take a moment and say technology is amazing... thank the lord above for this technology.

today on the plane

Today on the plane trip,  a very sleepy Jacob rested his head on my shoulder... In that minute  all I could see was my sweet little boy...I don't care if he is 19... He is my little boy.. and all I could think was he is going to be in so much pain ... he is SO brave... his nerves are getting to him, he hasn't been keeping his food down, but he doesn't want to talk about it.
   Since we checked into the hotel room he has been keeping himself busy with video games and things on you tube making him laugh... He has a great laugh... silly kid... He is hoping it will snow because he wants to hit me with a snowball... I don't that will happen before the surgery. The funny guy told me to... get this.. and hand me that.. then laughed saying he was just practicing for after the surgery.
    I can't wait for him to feel better... He doesn't remember what it feels like to be able to run without being exhausted... I was thinking about how when they first put him on beta blockers and his comment was" wow.. I can't feel my heart beating"... he thought heart palpitations were normal.  I hope and pray this surgery gives him a better quality of life..

   Our appointment for pre-op is at 10:30 tomorrow. They told us to expect it to be about five hours. They will  do a physical, chest x-ray, EKG, and lab studies then we will meet with anesthesia, nurse & doctor.

Amazing People

I am amazed at how caring my coworkers are.  They organized a fundraiser for our trip to Boston. I am amazed and humbled. The out pour of love shocks me. I totally understand times are tight, all I could ever ask for is prayers, so this act of kindness is so overwhelming to me.  When you have a sick child it's expensive. When the specialist say go to another state, it's even more expensive.  We have been so blessed, and lucky.  I know as I type that.. some of you are thinking lucky? Your son is having open heart surgery,  You have exhausted all your savings...you're broke.. how are you lucky...  I'll tell you... I'm lucky because my little boy is alive...AND I knew I had friends but never realized how many friends... I am so blessed and so lucky to have so many wonderful people in our lives. From my co-workers organizing the fundraiser,  the friends and family getting the word out about it, my extended family urging to set up a paypal for donations, ( thank you Amanda for doing that), the out pour of help ( from letting me know what I need to wear to keep us warm , to making sure we are getting the best deal on our hotel room) and prayers from our facebook friends,  to a friend in Mississippi taking time out of his vacation to stop in to pray with us, I am amazed. SO many people have helped so much. I just want you to know I appreciate all of you and everything you do for my family, no matter how little you may think it is. It's huge to me.  Tonight, we will be attending a local Beef O'Brady's . Our supporters will present the waiter with a coupon and Beef's will donate 10% of every meal  accompanied with a coupon to our family for our trip.  At the urging of many people who are unable to attend but wanted to donate my step daughter set up a paypal account. One of our friends donated $10. 00 to our paypal account and was almost apologetic. All I could say was, are you kidding me, that's like you just spent $100.00 at Beef's ... We appreciate it... In short I just want to say Thank You... Thank you for you support. Thank you for being in my life...

Is it too early for a Christmas wish?

   You know that feeling in the pit of your stomach, the one that makes you feel like you could just be sick any moment, yet it lasts all day. That's the feeling I have at this moment.  I just got off the phone with the hotel, making reservations for 22 days.  I've been putting it off. I think because finalizing the details makes it all real. Honestly, it's not like it's a vacation, this is a trip I wish I didn't have to be taking. Jake and I will fly up on the 6th. We can expect about five hours of pre-op tests on the 7th, and the surgery on the 8th.  They said usually the hospital stay is about 4 to 5 days, which is a lot better than the 8 to 10 we expected.  However, he won't be able to fly home until after the two week post op, which is two weeks after the date he is released from the hospital. Which brings us home after Christmas.  So although it will be sad being away from family for Christmas, we couldn't ask for a better Christmas gift than getting Jake better.  If I could wish for a Christmas Miracle it would be that this surgery will bring us a much healthier 2012. Research says that 30% of the patients receiving Septal Myectomies do not have a better quality of life....  My Christmas wish is that Jake doesn't fall into that percentile.  I want him in the 70% that improve. I know the surgery is not a cure,  but if I can't cure him what more could I ask for than better quality of life? ...(I know what are thinking.. What's all this glass half empty kind of thinking... 70%... surely he will fall into that.... but from what I read only 25% of people with  HCM need a myectomy... he didn't fall into that 25%.)
   So truthfully, I'm worried about the recovery time in the hotel.  Everything I have read says he will be more comfortable sitting/sleeping in a recliner... and we will be in a hotel... Last time I checked, hotels don't have recliners. I just want him as comfortable as possible.
   We will be in a different hotel than we usually stay in, this one is a bit farther away. It's a lot cheaper, has a free shuttle bus to and from the hospital, and has free breakfast.  It's not as close to everything, but I don't think we will be leaving the hotel room except for the visits to the hospital. Even if I thought I could leave Jake's side for a minute, the extreme cold weather would make me think otherwise. Do we even have clothes that will keep us warm enough (Hello Florida girl here! ) ?
   My head is spinning with a million stupid thoughts...  Stupid things, like packing as little as possible for the trip because Jake won't be able to help with the luggage on the way home, getting shoes that he can slide on, and button up shirts.  Stupid thoughts adding more stress to my plate like in 23 days, I will be leaving my daughter for 22 days. Never been away from her that long. I know she will be fine, my husband and parents will be here with her but still, it's a long time to be away from her.

   On a positive note, Jake lasted the whole night of Amanda's wedding. It was nice to relax, and enjoy the moment.  I know he was tired. But he was a trooper. It was a special occasion, and I know he ate more chips than he should have, I figure an occasional slip from the strict sodium intake restriction can't hurt too much.... I know if I research it to find out the risks involved with that, it would drive him crazy ( as well as myself) ... so I won't research that ...YET!

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.

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...

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.

StressOmeter

 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.

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...

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...

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...

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.

 
  

Ironic

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...

Rescheduled!

So, I finally got the confirmation, and made  the flight arrangements.  We fly out September 26th. On the 27th we have the Stress Echo at 1, meet with Dr. Maron (the cardiologist) to go over the results at 2:30, then meet with Dr. Rastegar (the cardiothoracic surgeon) at 3.  On the 28th we fly home. Hope everything runs on schedule!

    Jake and I seem to disagree on why he takes a nap every day.. He says he is bored... so he sleeps... however the other day Jake had a friend over... and he asked me to take the boy home so Jake could take a nap....  Bored? I think not...

Just another turn on the roller coaster.

Truthfully, I've never been much of a fan of roller coasters... love the feel of the wind in my hair... but those sudden twists and jerky turns always leave my stomach queasy..... such is life... We were all set...  Fly out on the 22.  Had three appointments scheduled for  the 23rd.  11 am- stress test , 1pm- meet to go over results, & 3pm- meet with the Cardiothoracic surgeon... Then fly home the 24th.  Angel flight booked our flight for us again. Everything was planned....But then came the sudden twist ...  this week we got a call that the Cardiothoracic Surgeon's vacation home burnt down, and he will be taking the week of the 22nd  off to take care of the details. So now, we are waiting for a new appointment date.  I should get confirmation on the date, hopefully Monday from the doctor's office.
 When we do get up there they will do a stress test to see if Jake is a candidate for surgery.  His pressure gradient has to be above 50mm Hg at rest or with physiological exercise to be a candidate.   A test they did on Jake here in Holiday back on March 4th show a peak LVOT Gradient 59mm Hg at rest. Boston has more experienced personel  doing the test , so I'll wait to see what their test says before I stress to much. What I do understand is that just because his septum thickness is massive doesn't necessarily mean he needs the surgery right away. It depends on if there is an obstruction. So now we wait...  Have I mentioned before I am a planner... I'm not so good at waiting... and not knowing... it drives me crazy.

On a positive note... Today Jake had a few friends over to celebrate his birthday, which isn't actually until the 13th.  Nothing to active... video games and movies, and he stayed awake the whole day. I know it seems silly, but I honestly think the last time he stayed awake the whole day, was in June for Jennifer birthday, but he was the first to sleep on the car ride home.

                                                               Jake and his buddies!

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.