August 21, 2014

Sorry for the delay in posting an update.  I'll start first with Sarah.  She's doing great.  She had an appointment with Dr. Aziz and Dr. Zahka and they were both happy with her test results.  They are able to hook up her defibrillator to a machine and it tells them everything her heart has done since they saw her last. Which is cool.  Dr. Aziz did up her Atenolol a little, but that was it.

Jacob had a full cath done on July 21.  It has always been through his right neck, but since he is at his one year transplant mark!!!!  they did it through his groin too.  When Dr. Boyle walked out to talk with us, you could tell something had happened back there.  He said at the end of the cath, Jacob's heart began to spasm.  They ended up calling the an adult cardiologist over to the cath lab, they then ended up giving Jacob 3 doses of nitroglycerin, but his heart continued to spasm.  Finally the adult doctor said to pull out the line they were using for the cath, and Jacob's heart went back to normal.  Apparently it was the way the line was resting on his artery and that's what was causing it to spasm.

Dr. Boyle had Jacob stay for several hours up on M40, which was nice to see all the nurses again.  There is a little 4 year old girl waiting for a heart on the floor now.  That would be tough to keep a little one like that busy.

Jacob had a 1A rejection, so Dr. Boyle didn't change any meds.  They also were expecting to have to put Jacob on Lipitor, since most heart transplant patients begin to have high cholesterol.  But Jacob's cholesterol actually came back low!  Which is good.  His next visit is at the end of September and his next cath is scheduled for the end of November.  Jacob will have another full cath where they go through the groin in 2 years.

Now for news about Jacob's donor.  We received a card from the family. This is who lovingly gave Jacob her heart.  Meet Brianna:

She passed away in a car accident, but had already chosen to be an organ donor.  Her parents granted her wish, and that is why Jacob is still with us.  We have corresponded with her family, and are delighted with how it's going.   Brianna seemed to be an all around wonderful girl, who was an excellent artist.  

Here she is with her beloved horse Sonny: 

Brianna was 16 years old when she died,  what she did for Jacob and others will never be forgotten.

June 9, 2014

Sarah had her surgery a few weeks ago and everything went well.   Dr. Aziz and the team were able to place the defibrillator in a pocket they made in her skin above her heart.  Then they put her heart into a fast rhythm and the defibrillator worked by shocking her heart back to a normal rhythm.  Thank goodness she was asleep for all of that!  She goes back in a few weeks just for them to check the device.  This device also paces her heart at night so it will not go below 40 beats a minute anymore. 

Jacob had his cath done too.  He came back with a ZERO rejection!  Dr. Boyle was very pleased as were we :) They also have him down to just 6 different medications a day.  Eventually he should only be on 3.  Jacob goes back for a full cath on July 21st, 4 days before his 1 year anniversary with his new heart. :)

Colleen called to let us know that the donor's family wrote a letter to us!  We are anxiously waiting for the letter to arrive,  we will finally know who gave Jacob their heart!

May 5, 2014

As most of you know Jacob was one of three kids chosen for the Cleveland Clinic Children's Courage Award.  We attended the event this past Friday where the kids were honored and given their awards.  They also had made a video of each of the kids, here's a link to the videos:

http://my.clevelandclinic.org/childrens-hospital/support/courageous-kids/default.aspx
 
Jacob had a wonderful evening where he was treated like a celebrity! 

                                                                Jacob and Dr. Zahka

                                         
                                                  Jacob and Stefani Schaefer dancing away!

It was a wonderful evening to celebrate Jacob overcoming the difficult road he had while in the hospital.  Jacob's last cath went well, his next cath is scheduled for May 16.

Here's a link to his interview with Stefani Schaefer:

http://fox8.com/2014/05/01/cleveland-clinic-courage-award-winner/

Update on Sarah too:  She wore a 30 day holter to watch her heart rhythm and she had enough episodes of tachycardia in the lower chambers of her heart that the team (the same team that Jacob has) wants Sarah to have an ICD placement.  This implantable cardioverter defibrillator would shock her heart back into rhythm if it would began to beat rapidly out of control.  She's having this done on May 14.  It will consist of a 3 hour surgery and an overnight stay.  She's in good spirits about it. 

Hope you enjoy the videos!