Sunday, May 30, 2010

Fontan Day 3 (Boredom sets in)

We’re officially over the hump of the Fontan surgery. Luna is recovering nicely-actually she’s ahead of schedule. The only thing we have hanging over our head is this little pacemaker issue. During surgery, as soon as she was settled into her to anesthesiac sleep, her heart beat went into a junctional rhythm. Basically this means the heart fires its beat off from different parts of the organ, when it should come from the atrium. In people with two ventricles this is no biggie. But with one ventricle, there are no liberties; the single ventricle people get put on a pacemaker-and fast. For now, however, Luna’s heart has settled back into a normal rhythm-which is a good thing.

Oh, and did I mention her surgeon now thinks she has a left ventricle? For the last year, she was determined to have a right one, but she’s switched teams again, this time playing for the left.

Now it’s boredom. And tedium. The most exciting thing to happen around here is shift change-which happens at 7am and then again at 7pm (these nurses really deserve a special place in heaven…seriously…they’re like angels on earth).

But boredom is much better than the nightmare we experienced the first night, just after Luna’s surgery. They always tell you after everything is OK, just how bad it got for a while. “Rocky” is the word her doctor’s use for her somewhat exorcist-like behavior just after surgery. No fewer than twelve doctors were in the room-several giving a running commentary on what medicines to add, what to pull. All the while Luna cried, bucked, reached, and grabbed for me; even under all those sedatives and while attached to a net of lines; giving the impression of a small whale fighting to escape a messy trap. Witnessing her powerful spirit and will to live was nothing short of incredible.

So, I leave you with some photos. As you can see Luna is uncomfortable, and bored. And she hasn’t moved since 7:30 Friday morning. And she has IVs in her feet (her wrist wasn’t having it), so she can’t walk now even if she wanted. But next week at this time, (knock a big ole piece of wood), she’ll be home, or maybe even on the playground with her sister.


Paul Anater said...

Keep your spirits up Sabrina and Paul, your family will be all the stronger for this experience. Just think, in a few days you will be home and before you know it your beautiful daughter will get on with her life and go back to the business of being a kid.

SGiles said...

I just stumbled across your blog and I wanted to say hello. My 3-year old Hannah is 19 days post Fontan. We just got home yesterday and are getting settled in. I know what you mean about the boredom...Hannah tested positive for RSV though she didn't have any symptoms, so we were in isolation for several days...yuck!! Movies and bubbles helped, but she still was going stir-crazy! She also had rhythm issues, but they blamed them on a stiff ventricle and it got better as the days went on. We are located in Alberta Canada now, but I grew up in Manchester, NH and Hannah's first 2 operations were at Maine Med!! We were fortunate that we didn't have to go to Boston...but this time around we had to travel 3 hours from Calgary to Edmonton for Hannah's Fontan. I can 100% sympathize with what you're going through!! Best wishes for a speedy recovery, and I look forward to getting to know you better!

Claudette said...

Best wishes...we love you! the Barkers- ps hopefully George will provide a minute or two of entertainment!