DEJA VU

         I can honestly say I have heard the term deja vu, but never truly experienced until today.  Twice in the last 36 days, Jake has gone to the emergency room having food stuck in his esophagus. The first time it was a piece of steak, but this last time it was rice. We followed up with our primary care physician, as directed.  Today we went to the appointment, arrived a little early, dealt with a creepy guy in the waiting room, then we were called back to see the doctor.  Everything was great until the point when the assistant opened the door and we walked into THE ROOM...  DEJA VU.... I've been HERE before..... the very room we were in March 3rd, 2011 when the doctor told us the diagnosis. Instantly, I felt the anxiety. I was thinking about how that day was much like today, joking around so innocently, waiting for the doctor, thinking the concerns that brought us there were minimal. So Seriously.... DEJA VU... Not only the same place, but ALSO waiting to see what is wrong with my kid.   Truth be told, many many thoughts ran through my head.... thoughts of ....

...asking for another exam room, really is this some kind of sick joke!

...just running right the heck out of there, screaming like a lunatic to make a more dramatic exit.

...kicking myself because why oh why did I not put on my big girl panties today! 

and

...what the heck are they going to come in and tell me is wrong with my kid now! 

You can say it....I'm insane in the membrane"  I know. Just RIDICULOUS! 

 Jake got off the exam table came and sat down next to me... and as simple as that I pulled it back together.

   Right now we are still waiting, our doctor has a few ideas of what it could be ( maybe scar tissue from being intubated or maybe something entirely different pushing against his esophagus)  , he wants to consult with a couple doctors to see the best route to go.  He explained that Jake will be seeing a gastroenterologist and probably having an endoscopy done.  However that is not set in stone yet.

 

   It amazes me as many times as we have been to see the doctor we have avoided that room until  today.  Funny how places can bring back such memories.

LIVING

   HELLO.. It is I ... The long lost writer of this blog...  I feel like it has been so long since I posted last.  We have had a busy year... Enjoying life.. watching my little boy live....  It's like life is normal again, but different. Things we took for granted before his disease progressed,  that we have been given back after the surgery, have so much more meaning.
   In June, we went on a family vacation, which was fabulous.  We even enjoyed a helicopter hide.  Jake was swimming and hitting on girls.  It was interesting when we met a couple and the gentlemen said he had noticed Jake's scar and had wondered what had happened to him.  We do not even notice the scar anymore and Jake clearly is not self conscience about it. I guess to someone who is not use to seeing a scar like that on a young man, would tilt  their head and say, "Huh?" Regardless, we had a fantastic time in Myrtle Beach.
 
  In July, we attended our family reunion, and it made my heart smile to see Jake playing games with his second cousin who had an equally rough year herself, being diagnosed with Crone's disease.  What a great day watching these two amazing kids having the chance to smile, enjoy family, and just be kids.
   As I flipped through pictures of the last few months,  I am just amazed at how blessed we are...  just living and enjoying life.
                                                        
   

 

   This morning, we went on an hour and a half long tour walking through a place that has rescued lions, tigers and other big cats.  Did I mention we were walking... for an hour and a half... I know it may not seem like a big deal to most but to me it's amazing. I have this overwhelming urge to cry. As I type this I recall the first conversation I had with the president of HCMA, when I told her we walked a half a mile down the road and she said I would not be continuing those walks with Jake because he was at severe risk for SUDDEN DEATH. Ahh Haa! Now you understand where I'm coming from. It is amazing. A true blessing.

 Every night this weekend, Jake and Jennifer are volunteering at a non profit organization's Haunted house. We have to pick him up at midnight.  Just take a moment to think about where he was last year at this time.... only awake between 4-6 hours throughout the day... to exhausted to walk anywhere....It is truly wonderful to see him living... enjoying so many things that for so long he couldn't do.  Every time I see my little boy smile, knowing he is enjoying life, I can't help but to think back to last year when life wasn't so fun for him or any of us. It sure makes you appreciate the simple things in life.
   

 

one year

One year ago today Jake had his ICD implanted.  It amazes me to think how much we have been through in the last year.  Jake had his ICD read Tuesday, everything looked good.  Joey was checked yesterday and his septum hasn't changed so they said to keep doing what he is doing.  Jennifer is fine. No thickening at all.
The last year has been the most stressful ever .. and yet today, one year later.. Life is good!

On a side note,  About a month ago I was contacted and asked to call a mother whose 14 year old son was about to have a myectomy.  It was nice to be able to connect with someone that knew exactly what I was going through ( although if I had my wish no mother would ever have to experience it). Her son is having surgery on Tuesday. I truly believe your prayers helped me through Jake's surgery. So if you could take a moment and say a prayer for Brandon, I would greatly appreciate it.

grant me serenity

What if they see signs of thickening?  This is the thought running through my head as I sit drinking my coffee. It's been just over a year since Jake was diagnosed (He is doing great.  He sleeps until noon like most teenagers.  He is currently focusing on getting his driver's license, taking it one step at a time!) Which means it's time for Jennifer's check up.  HCM is genetic, so siblings should be tested every year until they hit 21, then just every five years.   Our appointment today is at 9:45.  So, if you could just say a quick prayer for my daughter, I would greatly appreciate it. Usually I have not problem writing down how I feel but today I just can't seem to put it into words, the anxiety, fear, helplessness... I'll be saying the serenity prayer all morning.

What I've been waiting for...

 Today my heart is jumping for joy. I can't even describe what this day means to me... it is the day I've been waiting for. Today, Jake attended my nephew's birthday party. ( Happy Birthday Chasen.. which is exciting but that's not what has me beaming)  Last night we were still undecided if Jacob would attend, however after much thought about protection and the risks, Jake decided he wanted to go.....He decided it's time to live.... Did I mention it was a paintball party? This kid who had open heart surgery 53 days ago was playing paintball today like a pro...

ok .. maybe not like a pro.. but not like someone too tired to do anything fun.. I can't even tell you how excited I am that he was able to play. Two months ago this would not have been possible. Two months ago he didn't have the energy to stay awake let alone play paintball.

Today my son is enjoying life... WOOHOO!  Today my heart is jumping for joy.  I'm so happy I could cry.... ok..ok.. so happy I did cry.

Check up

Wow. I didn't realize it had been so long since I had updated, Quick recap...  When we went back for the recheck hoping they would release us to fly home, they instead, re-admitted Jake because his white blood count was high.  It turned out to be an infection behind his eye... Like a sinus infection and nothing at all to do with the surgery. It was a scary time. He had horrible migraines (which he had never had before) and he would break out with sweat pouring off his body in a room that was 71 degrees.  The staff at Tufts were amazing. When they released him for the second time on December 22 and said we could fly home... we did just that. We jumped on the first available flight and arrived home around midnight. We were thrilled to be able to enjoy Christmas at home.. YEAH....Jake is doing fabulous. Seriously.
  Yesterday we went to our local cardiologist for a check up.  They did an echocardiogram.  It was funny how excited they were to see the difference.  Jake's septum now measures 22mm.... Huge difference from the 36mm it was when he went in. But I'm not sure what that means for my little guy because normal is between 6-12. I do know there is NO more obstruction and the pressure gradient dropped in half. YEAH. 
   I'm worried... but trying not to be overly worried.  I do remember the cardiothoracic surgeon saying he usually does the surgeries when the septum is between 18-22mm... Jake's septum after the surgery is 22mm???  However I do know...the main point of the surgery is to get rid of the obstruction which is what it did.
   I am also a little concerned because of the recent loss of Ben Breedlove.  My heart breaks for his family. I know, I felt as soon as Jake got the defibrillator that it would all be ok, because the defibrillator was our security blanket. It would keep him alive.  So it's devastating to hear of a young man who wasn't saved by his defibrillator, and makes you aware that there are other things that can happen.

     So we will just take it one day at a time... Appreciating every great day we have...  and he is doing great!

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...