A Bad Dream

I feel like I am living a really bad dream, and it's only getting worse.

Dr. K came and talked to my husband and I last night. He had just finished closing Gracie's left wrist because the bleeding had just become to severe to continue to try and control. He and Dr. Kaza were able to do a new cut down on her right wrist and things went fine. He told us that Gracie is no longer a candidate for the Berlin Heart. After his discussions with the Berlin Heart director and the rest of the cardiology and surgical team, they decided it would be 'off the charts' risky and there is no chance of successful recovery. After he talked to the director of the Berlin Heart he got some interesting statistics. They have done over 500 VAD's on children all over the world (About 175 in the United States). Of the 500, they have only done FOUR on children AFTER transplant like Gracie. Of those FOUR, only two recovered from the surgery and only ONE made it to transplant and they don't even know if that person survived after transplant. They also feel that because she is too sick for the VAD, she is too sick for re-transplant and think that they really should not have re-listed her. I think we get comfortable with the word ECMO, but ECMO is LIFE SUPPORT!! This is serious stuff. A small baby on LIFE SUPPORT POST TRANSPLANT is just not a good candidate to recover from the VAD or re-transplant. Some of the reasons they told us as to why she is not a good candidate are: the immunosuppressants lower her ability to fight off any infection, new blood that's being introduced to her through ECMO is forming antibodies against a future heart, her bleeding, her swelling, her lungs, her possible neurological damage, and her overall weakness.

Some have expressed a desire to fast and pray for Gracie this Sunday. We are going to fast for courage, strength, and comfort, for us and for our children. And for the doctors to have clarity on her health care.

My husband said that it's like we've been saying 'goodbye' to her from the minute we said 'hello'. We're beyond grateful for the blessing that she has been in our lives. The past 11 months have been truly a gift. We recognize the Lord's hand in our lives and feel his comforting spirit carrying us through this most difficult trial. Many thanks for all of your prayers and support.