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...