Friday, April 29, 2011
Thursday, April 21, 2011
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.
Wednesday, April 20, 2011
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...
Tuesday, April 19, 2011
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.
Monday, April 18, 2011
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.
Sunday, April 17, 2011
I'm trying to stay sane. Right now, as he sleeps, and Jenni & Bill are out for a walk, I am here with nothing else to do but think of why we are here. I'm scared, anxious, and thankful. I just want them to put the ICD in so I won't have to worry so much. I jokingly say it is his ICD security blanket. Really I think it is mine. I know that little box is going to keep his heart beating. I can't wait for it to be implanted. However, I don't want to think about the discomfort he will be in after.
I know we are here to start the road to him getting better... so that is what I will focus on. Getting my little boy better.
Saturday, April 16, 2011
In my head I keep hearing,” Gentlemen, we can rebuild him. We have the technology. We have the capability to build the world’s first bionic man. Jacob will be that man. Better than he was before. Better, stronger, faster.” Ok maybe not the first and definitely not faster, but his heart will be better and stronger…
It amazes me that this little box with some wires attached are going to be able to keep my little boys heart beating. It's hard to look at him and realize he could be taken from us. He looks so healthy. Even now that I know how sick his heart is, the only clue you'd have is how tired he is. He sleeps a lot. It is overwhelming to think of what could happened. We still have to make it to Wednesday. I have faith in God that everything will be work out.
I have to say I am AMAZED at the outpour of love, and support from family and friends. On Thursday, after the doctor had called, I called my sister, the next thing I knew she had arranged our hotel stay and was able to get our airfare taken care of. I can’t even begin to tell you what a relief that was. The last three days have been so crazy, and emotional. That was one less huge thing I had to worry about. The hotel is right across the street from the hospital.
Wednesday, April 13, 2011
SO how is my kid handling it... He is excited to be going on an airplane. Also the crazy boy is working on impersonating Chinese voices from movies he has seen because Lisa said he needs to be in China Doll Mode... sitting on a shelf looking pretty but doing nothing... The only question he asked was.. "Will they have to put me on bypass to do this?"
So tonight... I will find him the answer...
Saturday, April 9, 2011
Suddenly my family find ourselves on this road less traveled but not by our own choice... I am so thankful there is an association to help guide us through this. It is helpful to hear from others who are living with HCM. It turns out Jake's psychiatrist also has a personal connection to HCM. It effects 1 in 500 people.
Nine days until our next appointment with the cardiologist.
Tuesday, April 5, 2011
Sunday, April 3, 2011
We were sent to the cardiologist the very next day, where again the doctor spent a lot of time with us one on one making sure we understand the limitations of the condition. No running, no baseball, no basketball, any strenuous activity could result in sudden death. Then, I felt like I was hit with a ton of bricks as he handed me a doctor's note to give to Jake's school requiring them to have a defibrillator on hand in case Jake goes into cardiac arrest. I'll never forget that night, turning on the T.V. to a news report about Wes Leonard, a 16 year old boy dying after scoring the winning basket at his basketball game. That was the slap in the face to say, seriously we are the lucky ones, we were diagnosed before it was too late. In the next week, the news covered two other children who lives were cut short from the same thing my little boy was diagnosed with.
In the few weeks that have passed, we have been through many ups and downs. Doctor visits, stress tests, echocardiograms for all the kids and the counselor appointments have been keeping us on the go. We have definitely been on an emotional roller coaster ride. Jake is trying to cope with his sudden physical restrictions. I'm trying not to go insane when he pushes the limits. We are incredibly blessed that we have an amazing doctor, who genuinely cares. The doctor is recommending a myectomy and an implantable cardioverter defibrillator. The hospitals around here do not do these procedures, so we will have to travel. Our doctor is researching which hospital will best meet Jake's needs. So right now it's a waiting game. Our next appointment is in 15 days.