Wednesday, June 5, 2013

In Boston

Hello everyone, sorry for the update delay. We decided to drive to Boston as they were able to get us into a last minute appointment for a heart cath on the 6th (tomorrow, yikes). Lilli did amazing on the drive and so far she has been such a trooper. We had pre-op junk this morning (EKG, echo, x-ray, labs...). They told us to be prepared for a 7 hour pre-op process but we were already out of the Hospital at 10 this morning.... so we decided to make a trip to the Franklin Zoo :)

We have to be at the Hospital by 10 am tomorrow. I was feeling REALLY confident going into today and then when the fellow went over all the risks, concerns, what they may have to do and it hit my like a ton of bricks (yet again) at how medically fragile Lilli truly is! It is so easy to forget how complicated she is and how miraculous it is that she is a thriving 4 year old. Words like "most heterotaxy kids will need a pacemaker at some point" and " potentially a failed Fontan" are not ones I want to hear... but realty I guess :(

Tomorrow will give us lots of answers and hopefully a "quick fix" to whatever is going on. PRAYERS please for a very simple and uncomplicated Cath.