Tuesday, July 21, 2009

Where to begin...

Ellie's cardiology visit wasn't bad, but wasn't great. They did an echo and couldn't see all that they wanted to see. They want to get her in for a cath in the next few weeks. Dr. A came to this conclusion because Ellie has remained blue and her stats don't normally get out of the 70's since her Fontan surgery 10 months ago. She is also extremely out of breath and tired after just a few minutes of playing. Basically, he hasn't seen any improvement since her surgery and that shouldn't be the case. He is sure that it has something to with the stent in her fenestration. Dr. T (our HLHS god) said after surgery that the fenestration was "generous" allowing a ton of blood flow to the small non functioning left side of her heart. Now, my worry is that when I asked Dr. A if a fix could be made through cath, avoiding another open heart surgery (don't we all agree, three is enough?), he basically made a funny face and was like "Weeeeeelllll, not necessarily." This does not sit well with me. I thought we were done with surgeries, at least for a LONG while. I can't really wrap my head around it. I have put an email in to Dr. T in Boston to see if he thinks we should travel to Boston for the cath. Bottom line - if we ever need another surgery she is going to Boston, so if this cath could lead to that would it be more beneficial to Ellie to have the cath performed at CHB?

On a positive note, there are no glaring issues with Ellie's heart. That damn fenestration just has never, and will never, make things easy on us. Ughgh!

Honestly, the thought of the mere possibility of another surgery scares the crap out of me.

My appointment last night was boring. They wouldn't tell me anything so I either have to ask the perinatologist I meet with tomorrow or when I see my regular OB next week. The tech wouldn't even check the heart for me. I thought that was just plain mean.

OMG... the great news of the day - No DIABETES!! For anyone who hasn't heard yet, we're just dealing with a little girl with some obvious toilet regression issues :) LOL

Take care and I hope I haven't freaked any of you out too much. If I did sorry, but this is a great way for me to vent so I can function again!


  1. I'm so sorry to hear this Alicen! I'll call you when Fiona wakes up from her nap.

  2. It was scary to read that and I can't lie, I shed a few tears. What I do know, is that Ellie is one tough cookie and what ever happens she will get through it. You all will. Just know that I'm always a phone call away if you ever need to vent!! Thinking of you all and sending lots of love and hugs your way!!! Love you! Felicia xoxo