<![CDATA[John Alexander Garabedian - Updates]]>Tue, 02 Feb 2016 22:26:23 -0800Weebly<![CDATA[Open Heart Surgery Take 2]]>Mon, 01 Feb 2016 01:58:41 GMThttp://www.johnsstory.com/updates/january-31st-2016UPDATE ON SURGERY NEEDED

John had a cardiac cath procedure on August 28th 2015 to place an extra stent in his aorta.  The blood flow through the aorta is now flowing very well after the second stent to reinforce the area.  During the cath procedure, the doctor noticed a membrane in front of the aortic valve that is causing the blood flow to be turbulent as it exits the aortic valve.  She informed us that the membrane needs to be removed, and the only way to do it is through open heart surgery.  She suggested we make an appointment with the surgeon, Dr. Starnes at Children’s Hospital Los Angeles to discuss it.
We met with Dr. Starnes on November 22nd, 2015.  After reviewing John’s information, he informed us that he would like to go in and shave off that membrane in front of the Aortic Valve.  He also saw a small membrane growing by the Mitral valve that he will take care of.  To our surprise, he went on to mention that he will make a decision during the surgery, whether or not the aortic valve itself needs to be replaced.  There might be some wear and tear on the valve itself because of the turbulent blood flow created by the membrane, that has been hitting against the aortic valve.  They will need to consider if the turbulent blood flow is causing the valve to leak or if the valve itself is leaking. 
If valve replacement is needed, it will be done through a process called the Ross Procedure.  They will use Johns pulmonary valve to replace his aortic valve.  This will be his living tissue which can grow with him as he grows.  They would then replace the pulmonary valve with a cadaver valve.  The cadaver valve will not grow with John as he grows and will probably need to be replaced within 8 to 10 years.  The good news is that the medical field has already advanced in replacing a pulmonary valve in the cath lab rather than having another open heart surgery.
John is set to have surgery at CHLA on February 4th, 2016.
 
HOW WE ARE DOING?

Johnny (Dad)
As I sat in the doctors office with Ida, waiting for the heart surgeon, Dr. Starnes, to come in and talk to us about the upcoming surgery, it was like sitting on pins and needles.  On one hand I know that God has a plan for John and that my Faith is telling me God will take care of this one too, yet on the other hand it hurts me to know that John will have to go through this again. The good news is that God is a loving and healing God.  My trust is in Him.  He knows what is good for John, and has placed us in the hands of an amazing, and I mean amazing, Heart Surgeon in Dr. Starnes, and a great hospital for Johns care in CHLA.  My prayer again is on that promise God gave us the first time John had surgery, “It’s not what the doctors think it is, Trust in Me.”  My prayer is that Johns valves will be stronger than expected.  I know my God still performs Miracles, and John is definitely one of those miracles.  God will be using these trials in our lives to make our Faith even stronger.  God will be using these trials in Johns life, to make him a warrior for God.  I pray that his testimony will bring a wave of Glory to God.  Through it all, I love the way God has given me so much peace in all of this. 
 
 
Ida (Mom)
Hearing the news from the doctor that our 6 year old is going to have another open heart surgery was not an easy thing at all.  What made it even harder for me was that we heard it the same week my mom went to be in heaven two years prior.  It’s been a difficult few years for our family but in the midst of it all we always see the Lord working.  Seeing the Lord work specifically in our lives helps me to keep having hope.  The news of John’s aortic valve possibly needing to be replaced is very scary.  At the same time, if it does seem weak, I’d rather have them replace it now, rather than in a few years in order to avoid yet another open heart surgery.  I don’t know what’s best for John and his body, but I know that God knows what he needs and He’s given us talented and gifted people to be His working hands.  I completely trust the team at CHLA and it is very comforting to know we are in the best place possible for John.  It took a few weeks for me to get over the shock and overwhelming thoughts of all that needs to happen if John is going to need surgery.  Many have been praying for all of us.  I saw a distinct turn in my feelings from fear and the unknown, to peace and trust.  After speaking more with the doctors, after divine appointments with friends, after support from everyone around us, and after much much prayer, the Lord has definitely brought new perspective, hope, and increased faith to go into John’s second surgery. 

John (John John)
How is John feeling?  He has a divine spirit over him concerning his upcoming surgery.  He knows he needs to go to LA and he knows the doctors are going to work on his heart.  When I tell him about it he stares at me with a huge smile!  He is happy and willing to go do what needs to be done.  The only complaints he’s had so far are that it’s going to be boring, and that it will hurt.  Yet he still doesn’t fight going, almost as if he knows it’s what’s best for him. 
John has been home from school since Monday January 25th.  I wanted to keep him home to lower the risk of him getting sick before surgery.  I have been teaching him his school work at home and that has been an adjustment.  I plan on keeping him home for two months after surgery and sending him back to school after Easter Break.  He is excited to be home during this time. 
 
WHAT TO PRAY FOR

Pray for wisdom for the surgeon who will be making decisions on the spot for what is best for John’s heart. 

Pray for miracles in John’s heart to once again be much better than what doctors are expecting. 

Pray for recovery to be smooth without complication.

Pray for the nurses who will be taking care of John after surgery.

Pray for opportunities to be presented at the hospital to minister and encourage others. 
 
 
 
INTERESTING WAYS GOD HAS WORKED SO FAR:

Once again our insurance changed right before the big procedure.  We were able to get the best health insurance for John. 

Liana started a new school this year.  Through her school, Ida has been connected with the most amazing heart moms who have been through it all.  Not to mention her class being so supportive and offering all kinds of help.  Also they have a prayer ministry through the school with prayer warriors praying for John’s surgery.  God is moving in mighty ways!

John kept asking to be homeschooled during the school year.  Now he gets a taste of what homeschooling would be like. (I have a feeling he’s going to miss school so much homeschooling will be out of his system!)

We were very sad that John is going to have to miss so much school because of the timing of his surgery.  It was also unfortunate that John is going to miss his little league season.  He loves sports!  But, on the bright side, once summer comes, he will not be limited with all the fun summer activities he would have been limited with if we did the surgery at the beginning of summer such as swimming, sports camps, the beach, etc.  Just a little something to look forward to. 
 

 

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<![CDATA[Answered Prayer to Aortic Valve]]>Wed, 29 Aug 2012 08:12:49 GMThttp://www.johnsstory.com/updates/answered-prayer-to-aortic-vavlePraise God Praise God!  As you all know, John was scheduled to have a procedure, called a cardiac cath, performed that was going to evaluate the condition of his heart.  The primary concern was his aortic valve as the doctors were moving towards another open heart surgery to correct it.  We were praying for the Lord to heal John so that a surgery would not be necessary and once again the Lord was faithful!  John will NOT need surgery!!!  For over a year, all of our visits with the cardiologists were pointing towards surgery, and that is what we were preparing ourselves for.  We prayed that the Lord's promise from the beginning of John's life would come true.  That promise was, "It's not what the doctors think it is and John is going to be fine. Trust in the Lord".  Johnny kept reminding me of this but I was having my doubts.  My faith was wavering more this time than any other time in John's life, but during our whole car ride home from the hospital the Lord again comforted me, as we saw a beautiful rainbow in front of us, even though it had not rained!  I knew it was God telling me "I ALWAYS KEEP MY PROMISES" God is so good!  That rainbow was a perfect reminder to always TRUST IN THE LORD!

THE NITTY GRITTY

As stated in the prior update the issue was tissue, or membrane in front of the aortic valve.  The Doctors were afraid it was it was narrowing the opening to his valve, causing his valve to leak and also threatening attachment to the valve which would be a major problem possibly resulting in a valve replacement.  It was our main focus to get a good read on what was going on in that particular part of his heart to decide if he is going to need surgery.  Every echo-gram conducted by different doctor’s offices showed us the surgery was very likely.  There was also a second issue of narrowing in the aortic arch.  This was going to be checked out during the procedure.  The doctor told us before the day of the procedure that if she can try to balloon that part open she will, otherwise she can leave it to be taken care of during surgery.  

On August 28, 2012 we came to Children's Hospital of Los Angeles to have the cardiac cath performed.  This procedure had been postponed 2 times already and this was our third attempt to make it happen.  The first appointment in June had to be cancelled because of a severe diaper rash that happened to form right before our appointment! Our 2nd attempt in July was postponed because the hospital did not have an anesthesiologist available for him that day.  So we moved it to the end of summer in August.  

Before the procedure our doctor came to us with papers to sign for consent and told us what was going to be done.  They were going to check the narrowing near the aortic valve, check the aortic arch for narrowing and measure all the different pressures around his heart.  She mentioned that she will also try to balloon the aortic arch to see if it will help open it up for better blood flow.  She proceeded to tell us that there might be a need to insert a stent to open up the narrowing of the arch, even though it wasn't very likely the doctor just wanted to mention it because it is a possibility.  We received a call from the doctor about 2 hours into the procedure to tell us that the she wants to place a stent in John's aortic arch.  Johnny and I were taken back because we were not anticipating this at all!!  But as we learned more we were put at ease.  

The arch was measuring at an opening of 9-10mm and at the point of the narrowing it measured at 3-4mm. The doctor tried ballooning the aortic arch at the narrowing, however it was so tough it would just come back to its original narrowed size. She recommended to place the stent in there to keep it open enough for the right amount of blood flow to the body.  The Dr. also mentioned that because of Johns age they would be able to use an adult sized stent and not a child sized stent which would not require us to come back soon to have it changed out. 

They discovered that the tissue or membrane in front of the aortic valve was actually not really an issue.  It was much better than what they had expected, and it ended up not being a problem requiring surgery to correct it.  The doctor told us our options are to put the stent in or to have surgery to correct the narrowing, however she recommended the stent.  Of course, we agreed!  Anything would be better than having surgery again!  She went on with placing the stent to correct the narrowing.  

After the procedure she showed us the pictures of how blood was flowing through the arch before the stent, and then the pictures after.  The difference was amazing.  The narrowing was affecting the blood flow to his lower body, which in turn was causing his heart to pump harder to increase the pressure.  Just imagine a 3 year old with high blood pressure already.  The stent was going to alleviate almost all the undue pressure in John's heart and allow his heart pressure to be normal. The valve did have a little of a leak, however she mentioned that it was not as bad as she thought and not requiring any correction.  Praise the Lord!

Our Cardiologist here in Orange County started discussing this procedure for John when he was just 2 years old.  I begged him to have us wait until he was three, if possible, so that John would be able to understand more, and speak what he is feeling, and be more calm overall rather than be in the terrible twos!  He said it would be ok to wait.  And for many different reasons this procedure kept getting pushed back farther and farther.  But we know that it was all in the Lord’s timing.  And He never lets us down.

We were praying with friends and family for the tissue in front of the aortic valve not to be a problem and that it would just disappear and be made like it wasn’t there.  It’s exactly what God did.  We prayed for John not to go through another surgery, and that’s exactly what God did!  Our God is amazing.  I’m not trying to say he is a genie and you can ask him anything and he will do it, but if we ask Him according to His will He will do it and that’s a promise.  And God never breaks his promises.  He reminded me of that with the rainbow on the way home.  Thank you Lord for showing your glory once again and letting us know you are always with us and will take care of us.   

1 John 5:14,15
“This is the confidence we have in approaching God: that if we ask anything according to his will, he hears us. And if we know that he hears us—whatever we ask—we know that we have what we asked of him.”

On a daily calendar, for August 29th (The day after the procedure) it read:
“I am leaving you with a gift – Peace of mind and heart. And the peace I give isn’t like the peace the world gives.  So don’t be troubled or afraid.” John 14:27

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<![CDATA[The Aortic Valve]]>Sat, 19 May 2012 06:05:28 GMThttp://www.johnsstory.com/updates/the-aortic-valveFamily and Friends,


Here is an update on John and what we discussed with the Doctor yesterday at Children’s Hospital of Los Angeles (CHLA).


Let me start off by saying Thank you for your continued prayers for John.  He is such a blessing, and we Thank God everyday for fulfilling his promise.  When you see John run and play, you will never think twice he had open heart surgery when he was born.  Johnny and I actually always joke that he has more energy than his older brother Garo.  Although his initial surgery took care of the largest concerns, we see a Pediatric Cardiologist routinely to make sure down the road when John is older that his heart will function the way it should without working harder than it has to.  Our Pediatric Cardiologist noticed a small narrowing by Johns aortic valve during one of Johns ultrasounds.  This is the last valve of the heart before the oxygenated blood gets pumped to the body.  This narrowing is causing more pressure on that blood flow than is needed and might be causing a small leak in that valve.  Our visit yesterday with the Doctor at CHLA was to look into this narrowing.  Their main concern right now is a piece of muscle, tissue, or 'membrane', as the doctor called it, that is narrowing the area of blood flow to the aortic valve.  It is very close to the aortic valve and maybe even attached to it.  This membrane piece has to come out and the only way to do it  is through another open heart surgery.  The problem with this membrane piece that is in front of the valve is that it can keep growing and attaching itself to the valve.  That would be a major problem and a bigger problem to fix the valve at that point.  The whole point of removing the membrane piece is to keep that valve safe and not have to replace his valve with a synthetic valve. 


The doctor is going to speak to the surgeon who did the previous operation on John, about John's case and get his opinion as well.  Nothing is set in stone yet but these were the things that were discussed. 


The only thing we did decide on, is that John will need to do a cardiac cath to be able to get more information of how his heart is functioning and see it more clearly than the echogram's he has already done.  This will be set up within the next few weeks.  He will need to be put under for this procedure and we will be in the hospital for a day, hopefully going home the same day.  We will stay overnight for one night at most if needed. 


Once they get the results of the cardiac cath, John's case will be discussed in a room full of cardiologists and surgeons to decide what is the best step to proceed.  This is where they might decide on surgery.


Please pray for our family as Johnny and I area a little bit drained from all of this.  We need the Lord's strength and wisdom at this time.  We are still hoping and praying for another miracle on John's life.  We know that God will complete the work that he already started in John and we have full faith in that.  We know John will be okay through all that will come at him.  But, we are praying that John will not have to face another surgery.  All things are possible through Christ and we believe that with all our heart, we have seen it first hand.  Facing another surgery right now will be completely different for John than when he was 6 days old and had heart surgery.  This time would be much harder because he is aware of everything yet can't understand all that will be happening around him.  This is something I don't know if I'm ready to face as you can imagine.  So we are just praying that God will work a miracle once again.  We are waiting in prayer.  We'll keep you updated.


~Ida

 

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