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March 10 The Arkansas Democrat Gazette interviewed us today. Casey is a little leery of all the attention. He still sees himself as very ordinary.
March 16 Casey's doctor appointment went very well today. They did another echocardiogram and looked at his heart function. His function has actually improved! In fact, it is near normal. We were quite encouraged by this news.
Apparently there are 3 things they look at when deciding to put someone on the transplant list. The size of the heart, the pulmonary pressures and the differential between the contraction and the relaxing of the heart beats.
Casey's heart is still extremly large. The doctor said it is very large even for an adult, much less a nine year old. His pulmonary pressure have been a concern from the beginning as they were very high and likely still are. They will test that with a Cath Test next month. So for now, our ray of hope is that the beat is getting stronger due to the medication, vitamins and minerals, and last, but not least, God's grace. Thank you all for continuing to pray for him.
March 23 The transplant nurse called to say the team had met yesterday to discuss Casey. They want to do the heart cath NEXT week instead of waiting until April. If his pulmonary pressures have improved like his heart beat has they will consider taking him off the transplant list! Praise God! Please pray for reduced pressures.
March 31 They did the heart cath today. We were not prepared for what they had to say. Casey's pressures have risen since his last cath in December. We were hoping they would be down and they might take him off the transplant list. He will actually be taken off for the opposite reason. He doesn't qualify with pressures as high as his are. They call it Pulmonary Vascular Disease. The doctor we talked to today said that this is probably what caused Casey's cardiomyopathy as opposed to the other way around, which is usually the case. Usually, people have cardiomyopathy which causes increased pulmonary pressures.
His prognosis depends on how quickly this disease progresses. He will continue the medication he is currnetly on. They say there is no other treatment. The only option the doctor mentioned is a lung/heart transplant which has, in his words, "quadruple the complications" of a heart transplant.
We'll wait to see what the rest of the team has to say, but at this point it looks as though he will be off the list due to ineligibility. The doctor says his pressures are irreversable.
We now have to wait for the team to meet before they tell us anything else. The doctor today said that basically they'd check him every once in awhile, but wouldn't do another cath. At least they won't do one until his echo and ekg's look completely normal and they want to check for a miracle.
We haven't given up hope.
Please pray for a miracle, we are.
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