Mayo study update

So after speaking to Macsen's 2 cardiologists and the Mayo doctor in charge of the stem cell study we have decided to not participate at this time. His cardiologists feel he is doing well at this time and worry the multiple sedations needed to participate in the study - several MRIs plus the sedation for the bone marrow extraction then injection via cath- will stress Macsen. His cardiologists also question if it will even be worth it - there are no preliminary findings published yet if injecting stem cells at this time helps heart function. Dr.Quereshi,  the Mayo dr, suggested we start Macsen again on a heart function medication. His was started 6 months before his last surgery when his heart function was so terrible. It really helped his function. He was take off though bc his local card felt it was lowering his blood pressure. He wasn't started on an alternate med but Dr.Quereshi thinks it would help. I think so as well but I'm not the expert.

Mayo study - to do or not to do

I had all Macsen's records sent to the Mayo clinic to see if he could be eligible for inclusion in an ongoing research study to strengthen his single heart ventricle. To be eligible he had to show poor heart function and I thought in light of how he's been looking - more energy, less blue, Sats in the low 90s - that he would be deemed ineligible, too healthy. So I was shocked this morning to learn after reviewing all his records Dr. Quereshi would like him to participate in the study.
It is a big undertaking with several trips to Rochester, NY, MRIs with sedation, the marrow aspiration and a heart cath. But it could result in better heart function for M - maybe he will finally start growing if his heart isn't working so hard. Maybe it will put off future heart failure for a while. And maybe it won't help at all and will be a painful, traumatic, expensive and possibly even life threatening (heart caths are no joke ) ordeal Macsen is old enough to remember.  We are discussing everything with his cardiologists and with our families but appreciate prayers to help guide us on the right path Here is a link to more information on the Mayo Clinic's stem cell trial

Happy New Years!!!!