Heart Transplant

First of all we want to thank everybody AGAIN for the outpouring of love and support for our family. AGAIN we have received meals, treats, gifts, emails, visits, comments on our blog etc that have lifted our spirits and made us feel loved. For that we say a big THANK YOU!

Now about Gracie. We spent the day talking to all sorts of doctors. We talked to our cardiologist, Dr. Su, our surgeon Dr. Kouretas, and several members of the heart transplant team. It has been determined that Gracie will for sure need a heart transplant. That is her only option at this time. This morning in their cardiac conference, the Glenn surgery was determined to be way too risky. We have full confidence in the team at Primary Children's. They have known Gracie from the start and know what is best for her. With hundreds of people praying for Gracie, we are confident that the doctors have been inspired to lead her down this path at this time.

They drew a lot of blood and will run several tests on it over the next few days. They have ordered her to be on full time oxygen at home. We are home now and Gracie is doing well relatively speaking.

The three main factors in Gracie getting a heart are:

1. Her panel reactive antibodies (PRA) number. This number tells us if she has developed any antibodies which would contribute to her rejecting her new heart. There are several antibodies and they can be rated anywhere from very high to very low. So it is a complicated test that involves several different ratings on several different levels. The best result is a zero and you can have a number as high as like 15. They would like to see Gracie's levels at 3 or under.

They hope to have these test results by Friday or Tuesday of next week. (If her antibodies come back with a high number, Primary Childrens DOES NOT treat that with immunosuppresant drugs. Other hospitals treat children with different drugs to get the antibodies to 'settle down' so that they are a better match on the donor list. Primary's has not found much success in that way of treatment. They feel that this just puts the antibodies 'to sleep' and that they come back after you have the heart and you are back to square one with problems rejecting the organ. They said if her numbers come back high, it greatly reduces her chances of getting a heart.)

2. Her weight (meaning they have to find a donor that is a match within her weight range)

3. Her blood type. Her blood type is O positive which is more rare. This will make her chances of getting heart a little bit harder because she can only accept an O blood type donor heart.

The average wait time for a heart is 3 months. The truth is, you just never know when a heart will become available. Their absolute shortest wait time was 12 hours and their longest was an older patient who waited a year. They give you a pager and you are basically on call 24/7 from the time you are listed on the donor list until you get a heart.

If all the tests come back looking good then we will just be here at home, living our 'normal life' waiting for the call. If time goes on and she has not received a heart yet and she starts to fail, they may have to do the surgery that I mentioned yesterday. That surgery entails removing her right ventricle to pulmonary artery conduit (her SANO tube) and shunting open her pulmonary artery and repairing her tricuspid valve which is said to have a lot of leakage. Dr. K. said this surgery would be risky and would be something we would do only if we had to to prolong her life until she could get a heart.

There are about 200 babies on the heart transplant list at any given time and only about 50-70 hearts available per year. You can do the math. You either get a heart, or die waiting. However, the coordinator that we talked to said that more often than not, the babies she works with get a heart. So we will try to be optimistic and think that Gracie will be one of the 50-70!!!!

There a several financial challenges ahead. They have to get our insurance to approve the transplant BEFORE they list us. Our insurance company covers Primary's but is not 'approved' as an in network provider for heart transplants. They will have to try and get our case approved on a single case basis. They are working on another transplant with our insurance company and are hoping to throw us into the negotiations on that one. If they cannot get it approved as an in network provider, they usually negotiate something like a 70-30 split. A transplant costs anywhere between $300,000 to $2 millions dollars. So, our 30% portion would be between $90,000 to $600,000. Can anyone say BAKE SALE? (just kidding!?) Plus the drugs she would go home from the hospital will cost us between $700-$800 a month. Whew!!

If all goes well and she gets a heart, she will be in the hospital after surgery for about 4-6 weeks. Upon going home, she will be on very strong immunosuppressant drugs which will severely limit her contact with the outside world for a few months. She will be on about 15 medications that will taper down to maybe 3-4 after a couple of years. Her condition will require twice weekly visits to Primarys for a few months immediately after and goes down in frequency from there.

So I asked the transplant nurse what her life would be like at age 3-4 (not including any feeding issues) and she said that Gracie would be on a couple heart drugs and probably some vitamin supplements. She would be a 'normal' child who could do pretty much anything she wanted. Physically, she will be better off with a whole heart than she would've been with a half of a heart. There are no real limitations after her body accepts the heart and is thriving. But getting to this point is the real challenge.

This post is long but I wanted to include as much information as I could while I remembered it. For now, we would love for people to pray for two things: that her antibodies blood test will come back low and that our insurance will approve a heart transplant. At that point we will be able to be listed on the national donor list and can focus our prayers on getting Gracie a new heart!!!

Thank you so much for all of your support. We will of course be posting the test results, etc. as we get them.