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Date: 13 Jul 2004
Time: 09:12:25 -0700
Remote Name: 184.108.40.206
It's been a while since we last wrote, and a lot has happened since then. Liam is still in the ICU at AI duPont and continues his roller coaster ride to recovery. Things have looked good some days and not so good other days.
I guess the big news, though, is that the doctors here began speaking to us last week about the likelihood that Liam will need a heart transplant. After speaking with them and hearing their recommendations, we agree that the heart transplant seems to be the right thing to do. So, we spoke with many doctors, hospitals, and other families who have been in this situation and we began narrowing down our options for hospitals.
We have decided to take Liam to Children's Hospital of Philadelphia for the operation. You may remember that we had considered this hospital before and have heard many good things about the facility there. As for heart transplantations, this place is world-class.
So, on Monday morning we spoke with the folks here at AI and up in Philly and started arranging for the transfer. Now, we are waiting for a bed to come available at CHOP. When that happens, Liam will be transferred right away. It's only about 20-30 minutes up the road, so it won't be a long drive. Heather has been up there to visit and she says that the hospital is very different than AI.
When the Nemours Cardiac Center was established here at AI, a great deal of thought was put into the benefit of having patients' families close to their children and the staff here takes great care to make this place as close to home as they can. We have come to find that in that regard, Nemours is unique among cardiac centers. So, going to CHOP, things will be a little bit different in our living arrangements.
We will also miss our friends, the nurses, doctors and staff here at AI very much. Living here for months on end, they've really become a part of our family.
That being said, we are moving forward confidently, knowing that Liam will receive outstanding care at the new hospital and we're anxious to get there and get settled in.
As for Liam's prognosis, he is still in the ICU, so it remains a serious situation. The docs have mentioned the possibility of replacing his Mitral valve as a bridge-to-transplant option if it looks like he'll need to wait long for a new heart. Also, CHOP has a ventricular assist device available which would function as a bridge-to-transplant device to keep his ticker ticking until something comes up. Due to his condition, Liam would likely be high on the list of potential recipients, but he's not listed yet, so we're anxious to get that done, too.
Last week, Liam had a blood test done to check for antibodies in his blood. High antibodies would indicate an increased chance that Liam would reject a new heart. Since Liam had many surgeries and blood transfusions, he was likely to have a high antibody count. We were relieved, however, to see that Liam's test came back showing zero antibodies. There will be more tests performed when he gets up to CHOP prior to getting him listed. And the CHOP docs will make their own recommendations based on what they see. But, we've already had his records sent and have spoken with his new cardiologist there and based on the records, they seem to be mostly in agreement with the AI docs.
We appreciate all the prayers and all the words of encouragement on the web site guest book and appreciate your calls and notes. Although we don't always have a chance to call you back or see you, seeing that you are continuing to think about Liam makes us feel so much better.
Hopefully, we will be in a new city, with new hope in the next few days. As always, we'll let you know how it's going.
Love to all from Wilmington,
Chris, Heather and Liam