fenestration

This stay is eerily starting to feel like our first time here.  Breathing tubes for weeks, multiple procedures, unexpected setbacks.  We made home and thrived then.  We can definitely do it again!

Sunday was a low key day, we kept Lucy comfortable and didn't make many changes.  Dr Nater decided not to pull the breathing tube because going back to the OR was a high possibility and we did not want to take it out, only to place it again.
Monday morning, the team gathered and decided to do the fenestration.  The fenestration is a hole that is placed in the right atrium and the fontan, which is then sutured together.  The hole allows for blood to flow over to the atrium when the lung pressure gets to high.  Although this will lower her 02 saturtaions, it hopefully will stop all the drainage.

#1 is where the fontan (conduit) is connected to the pulmonary artery
#2 is the fenestration

They were debating on when to take Lucy to the OR and placed her on the schedule Monday afternoon.  I signed all the consent forms (I feel like I am signing one a day at this pace).  Around 3 pm they had her mobile and ready to roll on down to the operating room.  I think normally, they would place Lucy on bypass in order to get into the heart and have a good look at where to place the fenestration, however with the previous week, I believe they felt it was too risky for her body to handle.  What they did is clamp off the space, then go in to find the best part of the atrium to place the hole.  The surgeons were in there longer than expected because after all was said and done, they expected her saturation to drop.  However, they remained in the mid to high nineties.  Lucy was back in her room by 8 pm and we were with her shortly after.  During surgery, on top of her three existing chest tubes, they placed one more and then a peritoneal port in belly.  Usually used for dialysis, but this was going to be used to only drain fluid as needed.  The fenestration ended up taking longer than the whole fontan surgery.  Only Lucy, I swear!

With no drop in oxygen saturations, the doctor's wanted to confirm that the hole was still open.  All of Tuesday was spent doing tests.  First an echocardiogram.  The tech was unable to get a visual of blood flow.  Next, they pushed saline through her PICC line.  This was actually cool to see.  When that happens a rush of bubbles flood through and pass through the fenestration.  They thought it would be easier to see this way.  Still no!  Our last effort was an TEE (transesophageal echocardiogram).  This is where an echo transducer is attached to a thin tube that passes through your mouth, down your throat and into your esophagus.  Because the esophagus is so close to the upper chambers of the heart, the images can be more clear.  I will say, after seeing the tube, thin is an understatement!  Dr. Roberson was unable to identify if the hole was still in place.  I could barely believe it.  Did Lucy really close the hole on her own less than 24 hours after surgery.

The team reconvened yesterday afternoon to discuss and decided that placing a stent in the fenestration would be the next step.  Our biggest concern about going back to the lab was damage to her kidneys.  We paged the nephrologist to ensure that Lucy was prepared and her kidneys were protected,  She was given extra fluid and a medication called mucomyst.  This medication is known to help protect kidneys from harm caused by contrast dye.  The goal is to try to place the stent using as minimally invasive procedure as possible.  They will try first with a catheter, then if they are unable they will go back through the sternum, but will only need to open up the lower part.
So we will wait to see if this (hopefully our last) procedure will do the trick.

Sometimes in hard times like these, all you can do is lean.  Lean on your faith, your family, your support and your prayer.

Rejoice and exult in hope; be steadfast and patient in suffering and tribulation; be constant in prayer.
Romans 22:13