Monday, July 15, 2013

Fontan Series: Aly's Story

When I started thinking about writing a post about the Fontan, there was one thing that really made me smile.  I really had to sit down and think pretty hard to remember back to our daughter's Fontan and it was only two years ago.  Over the last two years since our daughter, Aly, had her Fontan surgery, life has really taken a turn - a big huge turn towards NORMAL.  We are living a life now that we dreamed of and honestly, weren't sure was attainable when we found out about her special heart.  But now looking back, here is my reflection on the Fontan.

In hindsight, the anticipation for the Fontan was worse than the actual Fontan. I was a mess during the last few months leading up to the Fontan - worried about everything under the sun.  Could we do this again? Could she handle this? How would it be with an almost two year old? What do we need to bring? Will she forgive us? Will she remember? What kind of clothes should we bring? What about shoes? What about sippy cups and her favorite snacks?  I could go on and on and on... Here are the answers to these questions that I learned.

On the way to the hospital for our daughter's Fontan, I had a little breakdown where I begged my husband to turn around and go home.  I was looking at my sweet girl who hadn't been in the hospital since she was discharged from her Hemi-Fontan at four months old.  She had been living a typical baby life for 18 months and now we were forcing her down this road again.  My husband reminded me that this was a decision we made long ago - to fight for our girl - and there was no turning back.  All of this I, of course, knew but I needed to be reminded.  So we kept on our way with our car packed to the ceiling with what I anticipated to be our every need for the next 7-10 days.  (That was the average hospital stay for the Fontan that they had provided us with for planning reasons.  Over the last few years I have noticed that this is pretty typical- of course, there are longer stays and there are shorter but on average I think 7-10 days is pretty accurate.  You know, from my completely non-medically trained heart mom opinion :) )


In pre-op on the day of her Fontan

Our daughter's Fontan went very smooth from "go".  We were first case for the day so we got to the hospital early. Aly had a hefty dose of Versed and she was off to the O.R.  4 hours later, we were by her side in the PCTU.  She was so PINK!  She was extubated within an hour of settling in to her room and, as her Cardiologist put it, sailed through her Fontan.

A few hours post-op, on only a "whiff" of blow-by oxygen

By day 4, we were told that clinically she would be ready to be discharged but she was having some excessive draining in her two pigtail tubes.  So we spent the next four days just waiting for the drainage to subside.  Aly really did amazing. 

Day 6 post op, sitting in our hotel room (in the hospital) having a snack. You can see her drain tubes coming out from under her shirt.

She did have anxiety issues whenever doctors, nurses, volunteers, etc, came around but the hospital was really great working with us.  They would do rounds outside of her door instead of around her bed and come in to see her one at a time.  The nurses let us do her vital checks while they waited on the other side of the curtain.  By day 6, we were off all monitors and had free reign of the hospital.  We had to check in once for every 8 hour shift for vitals checks but that was it.  Finally, on day 7, Aly had the last of her drainage tubes removed; we stayed one more night to be sure there would be no fluid accumulation after the tubes were removed and we were OUTTA THERE! Literally, simple as that. 


Day 8 - DISCHARGE DAY! On our way home. :)

Emotionally, Aly did so well. She recovered well and doesn't seem to have too many memories of her Fontan.  She remembers sleeping in the hospital and us being with her.  She remembers watching movies and eating cheeseburgers in bed. 

The biggest stressor in the Fontan planning process for me... "How was I going to keep a toddler entertained while in the hospital?"  I had bags and bags and boxes of toys.  My hope was to have a grab bag of sorts so that anytime she was having a hard time, I would have a new toy for her to play with.  She was OBSESSED with singing cards at the time so I had gotten her a new one to open everyday.  I bought all new sippy cups and every snack I could think of.  In hindsight, I went a little overboard. :)  I hadn't really taken into consideration that she wasn't going to be feeling 100%.  The way she felt during recovery I would compare to how she acts when she has the flu at home.  She just wanted to snuggle, cuddle and watch movies.  We should have brought more snuggly blankets, pillows and movies and a few less toys.  I am glad we brought the sippy cups and the snacks.  Getting her to eat and drink after surgery was a little challenging but it was made a little easier that we had her familiar cups that she was used to and snacks that she loved.  And it didn't hurt that she could eat cheeseburgers and tator tots for every meal if she wanted since those were her favorite.  Nobody cared what she ate, as long as she was eating.

Another part of planning that I would have done differently is to bring more nightgowns and dresses (simple over the head outfits).  It seems with most Fontan patients, if their stay is prolonged it is because of the darn drainage so you will be battling tubes when attempting clothes so things that slip on and off easily over the head were best for us.  Aly spent most of her time sporting t-shirts and leg warmers. :)

Every hospital is different with their post-op guidelines.  Some require post-Fontaners to get up walking ASAP and some aren't as adamant.  Some insist on a fat-free diet and fluid intake restrictions and others don't.  As with every other step of this journey, there is no standard that all hospitals follow.  My advice would be to discuss this beforehand so you will all be on the same page as for what to expect post-op.

I know the Fontan is a scary thing to prepare for but we pictured it as a finish line.  We know that there will be more ahead for our girl down the road but nothing we can anticipate or plan for as we had been anticipating the three staged surgeries.  Looking back, for Aly it was the easiest recovery of all of the surgeries.  There was no "Hemi- head" headaches to deal with or any of the struggles of Norwood recovery. 


This is one of my favorite pictures of Aly. This was her 10 days after her Fontan. Playing outside like nothing every happened.