Gabe Long

First post: Aug 11, 2018 Latest post: Aug 17, 2018
Thank you for visiting Gabe's Caring Bridge page. We truly appreciate all the thoughts, prayers and well-wishes for Gabe leading up to upcoming surgery on August 13 at CS Motts Children's Hospital in Ann Arbor. It means so much to Gabe, and to us, to know that each of you are with him every step of the way on this journey. Please continue to send prayers and spread God's goodness with the lightness of HIS healing presence. 

Isaiah 41:10  "So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with My righteous right hand." 

For those that don't know the background of Gabe's journey, feel free to read on >>>>

Gabe was born with a heart defect called TGA (Transposition of the Great Arteries) and at just 5 days old he had is his first open heart surgery in Ann Arbor, MI at CS Motts Children’s Hospital.  TGA is where the Aorta artery is connected to the right ventricle and the Pulmonary artery is connected to the left ventricle of the heart—which is opposite of a normal heart’s anatomy---and meant that he would need to have an arterial switch in order for his heart to function normally.

Gabe has been doing amazing and his heart has looked great since his original surgery almost 12 years ago.  Of course there is always a chance that something could go wrong but we were very optimistic, with every check up he had annually things looked good.  He had a mild leak , which was common with a surgery like this and both of his arteries seamed to be growing at the same rate……Unfortunately, in January at Gabe’s yearly checkup, the normal “everything looks good and we will see you next year”  was not the case!  After his EKG, Dr. Stamato, Gabe’s cardiologist found he has an aortic insufficiency (leaking of the aortic valve). This was a concern more that it has enlarged his left ventricle to the size of an adult, which also makes the cardiac muscle work harder than normal.  We were told that Gabe was going to possibly have to have a valve replacement!  Sitting in the room with Gabe as his Cardiologist started to explain things in detail, all I could do is listen and glance over at Gabe randomly.  I didn’t ask any questions, I just listened trying not to break down….Gabe is 11 years old, he had to know what she was saying the entire time!  We left the doctor’s office and got in the car and I looked back at Gabe and I could see the scared look in his face as he said “Did she say I had to have another surgery?” I was trying to hold it together and be strong as I knew he was scared.  I told him we do not know 100% until we do a few other tests in the next few months.   Our worst fears were coming true though. The next few months we didn’t talk much about it, just lots of prayers, as we wanted to continue to hold out hope for the best. 

The first test we did after learning the news was a stress test to see how his heart function was. The stress test went great!  He has 80% heart function which is amazing as Gabe does not have any signs of fatigue or shortness of breath (major signs of the aortic leak).  He ran on an inverted treadmill for 10+min at nearly FULL speed  and after that test the Dr proclaimed him a super star!  I was so proud of how brave he was and how well he did. The results of the stress test were so good that they said he could still play baseball and basketball with no worries.  Needless to say he was beyond excited! But, always a but, his test showed that he had to have his aortic valve replaced sooner rather than later, as there was increasing concern about his heart being enlarged.   The cardiac team felt if we did the surgery now vs later his heart has a better chance to come back to normal size!  So when do you tell you 11 year old child we still have to have Open heart surgery this year.   One more test had to be done to see exactly how soon the surgery needed to take place.  At the end of May,  Gabe went in for a Cardiac Catherization to check all of his arteries of his heart to see if there was any blockage anywhere else.   I told Gabe he would go to sleep and wake up and we would go home...that is as much information as he wanted to hear this time.   Gabe told me he didn’t want to know any details... .just wake up and go home!

The day of the Catherization we went in and things were going well, Gabe was somewhat calm and took his IV very well.  We were so proud of him, then the nurse started to explain what was going to happen w/the procedure…well,this time I told her to zip it.... Gabe didn’t want to know details!  Troy and I got to wear fashionable gowns and hold his hand as they wheeled him down the surgical hall,  told him we loved him and would see him in a few hours.   We waited in the waiting room and the first update from the doctor, Dr. Bendelay, went well.  He said everything was looking good to start the Cath as Gabe was sleeping and his vitals all looked good.    A few hours later, Gabe’s Cardiologist, Dr. Stamato came out to the waiting room.  I thought it was so nice to see her and she wanted to say hi…….we all know that is never the case to just come and say Hi!   As they were trying to do the Cath, they found that Gabe’s pulmonary Artery was kinked and narrowed and therefore they felt they needed to place a stint in since they already had him under and this was going to have to be done before his surgery.  Dr. Stamato said it was never seen on any of his Echo’s because it was part of the artery that was further into his lungs so was harder to see during an EKG.   So what was suppose to be a routine Cath procedure became an all day surgery to have the stint placed which meant spending the night!  How was I suppose to tell Gabe we were not going home that day like I promised??!!   Fortunately, things went relatively smooth with the insertion of the stint and we are thankful they caught it now vs later. 

We waited a week to get all the test results back from the Cath and Dr. Stamato sent them off to CS Motts Children's to Dr. Bove (Gabe amazing original heart surgeon who will also be performing his upcoming surgery!) After reviewing all of his tests he still felt Gabe needed to have his Aortic Valve replaced with a Mechanical valve.  However, Dr Bove did say due to his age and his awesome stress test results, Gabe was an excellent candidate to attempt a repair vs replacement, which is very rare.  So, they are flying in another specialist to assist in the surgery with the hope they can repair the valve.  They didnt want to get our hopes up, as the odds are not very good that they'll be able to repair vs replace, but we'll take any odds at this point! They'll know right away if the repair is going to work. If it doesn't, they'll do the replacement in the same procedure while he is still under.

We had a few months to let this all sink in and asked the question….Can we wait until end of the summer to schedule the surgery?   Both Dr. Stamato & Dr. Bove felt he could definitely wait which was a prayer answered in and of itself.  It's allowed Gabe to have a wonderful summer filled with all his favorite things like baseball, basketball, swimming and lots of fun memories with family and friends...and of course, fortnight :)  

We'll do our best to keep this page updated as Gabe's journey continues over the next few weeks.  Love you all!

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