Cardiology appointment

We will be heading to NYC this Friday, January 30th to meet with the cardiologist. After voicing our extreme frustration that all necessary testing had not been set up for the January 16th visit, as well as the fact that our coordinator had set up appointments for the 30th hours apart, and asked that Dylan not eat for nearly nine hours, we have put our foot down and told them we won't put him through that. Amazingly, now NYC is going to accept the various testing that was done in Boston and use those reports. Although I have the utmost respect for Dylan's doctors, it is definitely worth it to question them and advocate for Dylan when it comes to all the testing, as we do know him best. We also learned from Grandma Elaine that it really was unnecessary for them to request that Dylan not eat for his ultrasounds because he does not eat solids and they would have been able to see everything they needed with only formula in his system.

We do have to have Dylan meet with NY's cardiologist in the hopes that he will be able to gather enough information to avoid the cardiac cath that was previously suggested. We plan on going to NY and going to the transplant living center (TLC) to register so that we can stay there when Dylan is actually transplanted. It is a place for us to stay two blocks from Mount Sinai and it's similar to the Ronald McDonald House. We had the pleasure of staying at the Ronald McDonald House in Philly in Feb. of 2008 and they took excellent care of us. After the cardiology appt. at 1:30 p.m., we will come home that same evening.

One step closer

Friday's visit to Mount Sinai was a long one, but we are one step closer to getting Dylan listed for transplant. Although Dylan went through a lot of testing for transplant in Boston, we now know that each center wants to have their own physicians conduct the tests, rather than just accept results from other physicians. Dylan had some chest x-rays done and a lot of bloodwork. We will be going back in two weeks to have NY's cardiologist examine him. The good news is that this exam will hopefully be sufficient and he won't have to undergo the cardiac catheterization. Dylan is going to have a PIC line put in (this will be done in CT) so that we can begin feeding him with an IV. With the IV we will be able to give him nutrition and bypass his digestive system and hopefully add some weight to him. Doctors assured us that after the cardiology appointment, he will then be ready to be listed. He should be on the list by February 20th, and then we wait.

News Channel 8

Jocelyn Maminta from News Channel 8 WTNH just contacted me to let me know that her piece on Alagille Syndrome and Dylan are going to air tomorrow between 5:30 and 6 p.m. Dylan's GI doctor, Dr. Karan Emerick, an expert regarding Alagille Syndrome, was interviewed as well and the piece should be very informative.