One Year Ago....

October 15, 2008

I still remember the day as if it was yesterday. We took Owen in for his 3rd cardiac cath. The intention was to "fine tune" his heart for winter, to avoid the hospital. His last open heart surgery was six months prior. He was doing okay... not thriving, but okay.

I remember sitting in the waiting area when Dr. Pearl (Owen's heart surgeon) came and sat down. My first reaction was that he was coming to say "hello"... he wasn't the one performing the catherization. Instead, he was the bearer of the news that would change the course of our heart journey.

Owen would need a heart transplant.

I remember the rush of emotions that swarmed over us at that moment. I held back the tears and wanted to pick Dr Pearl's brain. He did say that a transplant might be in his near future, but there is a chance we have some time on our hands.

Here we are a year later!!

Owen is still not listed for a heart transplant. This is a miracle and a blessing.

What are we waiting for??

We are waiting for Owen to become sicker. Owen's heart is failing and has been for well over a year now. He is on nine oral medications that sustain him at home. Owen has one good day for every couple of bad ones. He exhausts easy. He has little energy (not even close to a normal toddler). His oxygen saturations run in the mid 70's on 3/4 liter of oxygen. His blood pressures are low. He just feels crummy alot of the time.

At some point, Owen's cardiac output will decline. His oral medications will not be enough and he will need IV medications to sustain him. That is when he will be listed and placed at the top of the transplant waiting list.

Here's another obstacle.

Owen has highly sensitized antibodies (98% to be exact). This means that the donor population that he can accept a heart from is minimal. When he starts to decline, he will start an aggressive treatment of IVIG (immunoglobulins) and Cellcept. This will wipe out his immune system and hopefully his antibodies. This will open up the opportunity to find a negative crossmatch for a heart.

Right now, we walk a fine line. We don't want to list him too soon as he is doing okay at home and gaining strength. We also don't want to wait too long to list him, have him decline rapidly and not get a heart in time.

We continue to count our blessings and thank you all for your prayers!! We know that when the time is right, Owen's perfect heart will come.