The Fontan

Here we are, Fontan surgery.  It feels like this day has been a long time coming and with the postponement, it made anticipation that much greater.

Wednesday night we said goodbye to Connor and packed for the hospital.  Lucy played with her brave cape (thank you Heart Heroes)!  We also read Franklin goes to the hospital three times before bed.  Thank you Grandma Sherry!

Thursday morning we arrived at the hospital at 6 am.  We were lucky with the delay of surgery that we did not have to redo pre-op testing.  They did however have to draw blood.  Never a fan of the needle prick (I get it, I hate them too) she cried her eyes out.  But she had the Peanuts gang with her along with a new Peanut comic book to help out until it was time to be rolled away.

At about 7:15 am we gave her a dose of versed.  Always funny to see her loopy and she was about ready to head into surgery, but let's back up a little bit.

As most of you know back in July of 2014 Lucy had her Glenn procedure, the second part of the 3 stage surgical approach.  It is the first part of directing her blue blood (oxygen poor) directly to her lungs.  The Glenn brings all the oxygen poor blood from her upper body directly to the lungs by connecting the superior vena cava to the pulmonary artery.  The Fontan procedure completes the task of allowing all oxygen poor blood to flow (instead of being pumped) into the lungs.
The procedure disconnects the inferior vena cava from the heart and connects it to the pulmonary artery (via a conduit) allowing all the blood from the lower body to flow to the lungs.  At this point all  flow to the lungs is now passive, driven by pressure build up in the veins.  The pressure build up can cause fluid to leak into the chest cavity and therefore kids are put on a restricted liquid diet for a period of time.

Alright, we are all caught up!

She was just chilling as we kissed her and said goodbye.  We headed down to the cafeteria for breakfast as they prepped Lucy in the OR.  At 9 am, the nurse (Kathleen) came out for the first time.  Kathleen said she did amazing.  They had beach boys playing in the OR per Lucy's request.   A big thank you to one of our favorites, Sheila, for making that happen.  Lucy had her central line and arterial lines placed and she was already on by-pass.  We had assumed she would have a lot of scar tissue and it would take some time for the doctors to clean it up.  Apparently not the case.  Around 10 am, Kathleen came back out and surgery was complete and Lucy was being closed up.  It felt like the fastest surgery to date.  Although, I think my memory is a little foggy from normal, non hospital life!

Lucy was in her room by 11 am and we were with her shortly after.  Dr. El Zein said everything went according to plan.  They did not have to fenestrate, which is great.  It means her lung pressures were in range of where they needed to be.  The cardiologist said she was really dry and the maintenance level of fluids had to be increased a significant amount to get her numbers where they needed.  

Lucy was not able to eat or drink for 24 hours after surgery.  We really saw her discomfort all day after surgery.  She cried about every ten minutes for at least eight hours straight.  It was so disheartening to have her continually ask for water and have to say no.  To ease the pain and agitation, we gave morhpine, versed, toradol and fentanyl, but nothing was working!  She would not settle down.  Around 9 pm, the doctor decided to put her on a fentanyl drip, in hopes that a consistent amount would allow her to get some rest.

Lucy's intake is reduce by around 50% to ensure there is not liquid build up around the lungs and other places.  Her total liquid intake for day two was 1800 ML (60 oz), but that included any fluid given to her by IV.  When all that was taken into account, she was allowed twenty ounces of water for a twenty four hour period.  I know what you are thinking, why can't they reduce the amount given by IV and let her drink it instead.  I asked!  The IV fluid has electrolytes, sugars and other things her body needs that plain drinking water doesn't.  Bummer!  We rationed her water by giving her 2 ounces every two hours while trying to save about 4 ounce for overnight.  There were still times she asked for water and was not able to have it.  She did eat two servings of yogurt and some applesauce which I think was a small distraction from the water.  

By day three the lack of sleep had caught up.  She slept most of the day only waking up two or three times.  It was nice because every time she woke up she was able to have two ounces of water.  We saw her appetite decrease to nothing, but I managed to sneak in three bites of yogurt around dinner time.

 She was so tired she couldn't even hold her head up to watch the kindle.

From a cardiac standpoint she is looking very good.  The doctors are just trying to ween anything that isn't needed while making sure her electrolytes, calcium, potassium stay in balance.  I will say it is quite weird to see her oxygen saturation at 97%, which means her fingers, toes and lips no longer have the purple tint.  No more having strangers ask me if Lucy is wearing lipstick or just ate a Popsicle!

We have heard more than once that Lucy has been a model patient.  I have heard her thanking the nursing staff without prompting and that brings a smile to my face.  We cannot wait for her to get back to her old silly self.

We want to thank all our prayer warriors that have been on this journey with us.  I can't express in words what you mean to us.  Whether it was a prayer for overall recovery or more specific prayer for her thirst to be quenched, each and every one was cherished.  We love you!!!