So glad to be on the other side of that!

As much as I know about Tiernan's heart and the impact it has/will have on his life, every time he has a procedure or a check up I come away with new knowledge.  Some good, some overwhelming, some mind blowing and some really defeating...IF I allow myself to dwell there. Which for now, I don't.
But I digress
.
Pre-Fontan Cath Results:
Hemodynamics look good and there is no reason to suspect he won't accept the Fontan physiology when the time comes.
The question, of course, is when will that time come?  Soon-ish.  Because there isn't an emergent need, (like there was for his first two surgeries) we can negotiate a little.  There is a difficult balance between doing what he needs and getting a timeline that works for everyone.  The docs came to the table with October.  Git er done before the dreaded CAFS (cold and flu season) kicks up.  But as teachers, that is pretty bad timing because we would need to be out for however long his hospital time dictates, AND we wouldn't want to put him into preschool once the CAFS is in full swing which means much more time off work.  So that is not our best option.  We came back with May.  Dr. Park countered with Spring Break (April).  Either of those is do-able since we would work it out for him to be home until next September.  But for now there are no definite decisions so we will just wait and see what they discuss when Dr. P presents his case to the other cardiologists.

Collateral Vessels (CVs):

So, Dr. B discovered several CVs but only one that he could coil.  It had grown between his aortic arch and his left lung.

As a reminder, his heart as it is now:

The blood flow leaves his heart, pumped by both his right ventricle (RV) and his too small left ventricle (LV)  It goes through his combined Aorta/Pulmonary Artery (PA) also known as the DKS and through the arch up to his head and down to his body.  Blood from his head comes back down through the Superior Vena Cava (SVC) directly into the PA branches to go out to his lungs for O2.  The blood from his body comes back through the Inferior Vena Cava (IVC) and does not go to his lungs, but rather, mixes around with the red blood from the lungs, thus diluting it, and then goes back out to the body again.  This is why he has O2 saturations (sats) in the low 80s instead of high 90s.  A good portion of his blood never goes to the lungs and the blood that does gets mixed back in with the blood that didn't.

So this little CV appeared at the point where red blood is going out to the body.  But because the CV was there, it siphoned off some of that red blood and took it back into the left lung, where it would get more O2, which it didn't need because it was already mostly oxygenated.  So it is completely useless blood-flow.  So Dr. B got a coil in there to stop it up and keep the oxygenated blood going where it needs to go.  Dr. B also said that before the coil was placed, (or as the nurse said, "deployed" lol) the sats in his left lung were nearly 20 points higher than the right lung!  Now they are dead even.

Okay.  So here are the rad photos.  I am seriously obsessed with them.  I love it when doctors take pictures so I can geek out a little.

Pre-coil:

Post-coil:

WHAT?!!!  So amazing!

Anybody?

Nobody?

Ahem.

Well I'm impressed.  I just can't imagine this won't help him feel considerably better!  Hopefully it will mean he won't get blue and winded quite so fast.  The other hope is that his heart will not have to work quite so hard with that coiled off and will ease some of the work on the BUFV (big, ugly, floppy valve).

Aaaahhhh yes.  The BUFV.  That is really the root of all evils for this little boy.

When the surgeon (as of yet, undetermined) does the Fontan, he will decide if he can also go inside the heart to put a few stitches in the delicate valve to stop the leakage.  The problem is that it is, as Dr. B described it, a bit like trying to stitch up wet tissue paper.  So the surgeon could decide that the risk of causing more damage is too great and they won't try.  So where does that leave us?  Because it is a giant abnormal AV valve (remember, because of the canal, he does not have two separate valves), they do not replace them.

They just don't.

So here is the deal.  No sugar coating.

Transplant.

Yep.  That is the only option if they cannot stitch it.
There it is.
And if I allow worry and anxiety over that word to take up residence in my mind, I'll go bonkers.  So I won't.  Because, as I've often said, modern medicine is advancing by leaps and bounds.

I mean, seriously?

No. Really.

Click that link and hold on to your jaws people because if you don't, they will hit the floor.

Not. Even. Joking.

So right now we are just happy we made it through that cath.  Honestly, I was a bit surprised at the level of anxiety I experienced surrounding this.  Having had such a blissful 2 years (nearly) of no surgeries, this was rough.  Emotionally speaking.  But it reminded us, yet again, how blessed we are by the doctors and nurses and hospitals available to us.  It makes the whole process that much easier.

And by easier, I mean completely-awful-wouldn't-wish-it-on-my-worst-enemy-but-not-as-bad-as-it-could-be sort of easier.

Right?

Riiiiiight.

So enough of that.  Check out some of the photos of our little adventure at Mary Bridge Children's Hospital.

 Super Heart Hero Tiernan was ready for action

 Dr. Bellotti brought him a Happy Birthday-gram.  He didn't sing anything though.

 The pre-op nurses also put together a birthday gift for him, including new cars and a cool garage.  He read the directions and instructed me in the construction process.

 Post-op Tiernan was so calm and cooperative.  He had George, The First Male Nurse Mary Bridge Children's Hospital Ever Hired.  He was super cool.  He bent the No Kids Rule of the PACU and allowed Tristan to come in and see Tiernan.  He even gave him a Popsicle and  Goldfish crackers just like Tiernan.

 Benefits of a super sweaty, chilled out boy.  You get to give him a rad faux-hawk.  

Awwww yeah.  :)

 And now for a few photos of the newly remodeled MB rooms.  This is in the hall outside of the Med/Surg Floor wing.  There is one with different colours outside the new PICU.  Some of those glass bubbles contain blown glass sea creatures.  Sort of an I Spy type of thing.  Super cool.  

It is an underwater theme and all of the rooms on the Med/Surg Floor and PICU are like this.  Totally amazing.  The old rooms on The Floor were not much bigger than his bed.  

 Auntie and Uncle Matt came to visit.  That many people would never have fit in the old rooms.  I could have taught an OULA class in the extra space!  hahahahah

 Every room has a different under water theme and a beautiful mural wall, along with different coloured lights above the bed that you can turn on and have alternate at various speeds or just stay on one favourite colour.  A simple thing but it really made Tiernan happy.

 Okay.  This may just look like a bathroom to you but you have no idea.  

1. Those tiles were hand made by kids back in the spring.  Tiernan got to make one too, thanks to favourite PICU Charge Nurse Lori.  Every room has those.  Who knows where Tiernan's is.

2. There is a beautiful tile mosaic on the wall to the left of the shower.

3. Before this remodel, when in the PICU, in order for a parent to use the bathroom (much less shower), one had to leave the PICU, go down a floor to the closest available public bathroom.  And still no shower.  Now even the PICU parents have this in their child's room.  It may as well be the Hilton.  It's that luxurious.

 Once all the visitors left, Tiernan feasted like the prince he is.  He devoured that bowl of mac and cheese, emptied a bowl of grapes, ate several bites of peas, most of a banana, drank two cartons of milk and half his birthday brownie.  And that was AFTER his Popsicle and crackers from George.  This kid was insatiable.  

 I just love the spirit in this picture.  Clearly he is still pretty worn out from surgery, but he didn't have any pain meds on board and was still smiling and giving a big thumbs up.  

  Finally, after a wakeful night (up every 2 hours or so) he was up for good by 5 and had a grand time being in charge of the cool bedside  remote/speaker/pretty nurse summoner.  

Maybe the best part of the morning was that Dr. B showed up before 8am to bust us out of the joint.  Such an early discharge has happened....well....never in the history of hospital stays.  So I can absolutely say now that Dr. Bellotti makes a strong first impression.  And if you have to lose a Dr. Chris Stephanelli, then it's good to replace him with a Dr. Chris Bellotti.  :)

If you are still reading this novella, thank you ever so much.  I really can't explain how much it means to me to have so much virtual and local support, and so many prayers and good juju coming from all over the world.  Literally.  So. Grateful.