EPIC summer 2017 roadtrip

On our way

Summer camping

Macsen has some appointments scheduled in Philadelphia and we are taking a week to get there. He will be having some exercise testing done in preparation for a special clinic at CHOP called the Single Ventricle Survivor-ship Program - or SVSP. We have a camping spot scheduled at Shenadoah! I am so excited to bring him and the girls there. When Macsen made it through his 2nd surgery and we were able to finally let out the breath we had been holding since his prenatal diagnosis we revisited the list of things we mourned we would never be able to do with all 3 of our children. Camping was near the top of the list. It is something we did a lot of when I was a kid and some of my most vivid memories are of the excitement I felt on family camping trips. I'm so very very excited to be able to bring my kids to one of the spots I remember visiting - and to be meeting up with my sisters on the trip!

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.