This is what success looks like

Tiernan has a four chambered heart.

(for some reason this video won't play correctly, but you get the idea, I hope)

He had his first follow-up with Dr. Park today and his echo blew me away.

I think it blew several other people at Northwest Congenital Heart Center away too.

On the left is his echo from today.  The one with 4 chambers.  And as Dr. Park said (not a direct quote) it is one thing to reconstruct the heart as Dr. Hanley did.  It is another thing entirely for the LV to be functioning so well!  In fact, pretty damn close to normal!!!!  

If you look closely, you can see how much more space is in the LV (which is actually on the right side of each screen) as well as how crazy that common AV valve was before surgery.  

The other thing that I cannot quite comprehend just yet is that the CoA has all but disappeared!!!!  Dr. Park said the gradient is about 16 and he could probably find a similar gradient in my heart.  No reason but the normalized blood flow for that I guess.  Because, as we know, Hanley did not touch that coarctation, and they cancelled the cath that would have addressed it.  

The only remaining issue is the mitral valve.  It still leaks "moderately".  This is still there because the LV still needs to relax and the LA pressures are still higher than normal and those things push the blood back through the mitral valve.  Unless this rights itself over time, he will likely need a new mitral valve someday.  We hope that, if he does, it can wait until he is 15 or so.  That way he would be big enough so they could place the adult sized valve.

I will not cross this bridge yet.

This man.

 How does one adequately express their feelings about someone who literally transforms your child's heart, and, as a result, his future.  I can't.  I think I mentioned awhile back how Jason saw him in the hospital and he was totally star struck.  It was as if Hanley were a rock star.  

Well, he is a million times better than a rock star.

 

 So throughout Tiernan's recovery, his doctors and nurses and other therapists were competing fiercely to be the first to receive the highly coveted high five from Tiernan.  

On the last day, Lupe got it.  Lupe was our medical case manager.  (I don't even know if that is the correct term.)  At any rate, he is one cool dude, who just happens to be from Yakima and has gone to the Puyallup Fair on numerous occasions.  

 This was the big moment.  Walking out of that building with Tiernan was so surreal.  I couldn't help but think the other shoe was about to drop.  

I'd be lying if I said I'm not still feeling that way.  This is too perfect.  

But no.  Things really have gone this great!

 We stayed one night at the RonDon and decided it would be silly to take Tiernan out to a restaurant so we ordered in.  And who wouldn't order from Pizza My Heart on such an occasion?

 Jason flew home with Tiernan the next day and that all seemed so fast given he had only just left the hospital and the security of all the monitors telling us his sats and HR and BP and everything.  

Jason thinks he stared at Tiernan's nostrils the entire flight to watch for any sign of "flaring".  :)

But we all made it home by Friday evening thanks to Jason's mom, Kathy driving Tristan home, and my mom flying to San Jose and then driving the 2 days up to Puyallup with me.  

We were greeted with this great banner from our sweet neighbors, Alisha, Sophia, Evan and Jerrod.

Since both Grandma and Nonni were there, we figured we would celebrate his 5th birthday a few days early.  He tried to put out the flame like a proper firefighter.

 He did, however, ultimately resort to the traditional method. 

 I honestly have no clue how I managed to catch such a perfect photo of these to boys.  

 On Tiernan's ACTUAL 5th birthday, he donned his crown (made by his pre-school teachers) and we headed out to celebrate in style at Red Robin.  Yummmmm.

He devoured 90% of a corn dog and completely ignored the giant ice cream sundae they placed in front of him.  ?!!!!  He has not had much of an appetite since coming home, but no ice cream???  

Weird.

 Tiernan has been pretty excited about the Coast Guard since our visit to the USGC Blue Shark before we left for California.  This pretty much made his life.  

Back to today.....

Tiernan announced that he never wanted to leave NWCHC.  Ever.  He loves Dr. Park.

We do too, of course, but something has to be done about that whole Green Bay Packers thing.

Seriously.

After such a happy cardiology appointment, we absolutely felt a visit to Legendary Doughnuts was necessary.  Tiernan was pretty psyched about that giant doughnut (which, FYI, is approximately half the size of the original version....the lovely girl working there made it on the normal-sized doughnut.)

He did not finish that baby, though.  Which is why we will be resuming our visits with Dr. Pickens in GI.  He will see him primarily because he will need a swallow study to take place, but also to get in with nutrition again to see if we can pack some pounds back on.  He lost roughly 4 pounds during his stay, which is not unexpected.  But he is pretty skinny.  And his appetite has not fully returned.  GI can just help us come up with creative ways to maximize our calories in the foods he wants to eat.

It looks like 27 days in the hospital is all it takes to recover from a total heart remodel

The blue number says 100. 

His O2 sats are at 100%!!!!

 And he has no O2 going in his nose!  He is on room air and keeping his sats at 96-100 all the time!

I cannot believe we are finally at this point. 
A month ago I couldn't believe we would EVER be at this point.
Tiernan has a heart....his OWN heart....and it functions like a normal heart.

With a considerable amount of medications for now, that is.

Dr. Hanley weighed in and he does not want a cath, and he does not want them to wean any of the diuretics. 

We are set to be discharged tomorrow!

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I cannot believe it. 

That is all.

Cath has been cancelled....maybe permanently

Before anything,  I just have to brag about my Tristan.  What an artist he is becoming.  This is the Jade plant that has been in my parents' home since I can remember.  It grew from a cutting off a plant at my mom's great aunt's house.  I am floored by the details Tristan added.  The old nylon and stick supporting the plant.  The texture on the trunk.  The variation of color on the pot.  The leaves that have fallen into the pot.  It is remarkable.  I hope he will decide to take art lessons to hone his skills.

 Tiernan and Lydia got together for a playdate in her room yesterday.  She taught us how to play this great game called Pengoloo.  It is like a memory game.  So nice to have friends in the hospital. 

 I know I have said this before, but we have been so happy with Tiernan's nursing team here at Packard.  But some just stand out.  I was not here for this moment, but this gal decided to have Tiernan flush his own PIV.  Typically, this is one of the biggest irritations for him.  He always cries and resists.  She knew this approach would turn things around and it really did. 

 While out for our morning adventures, Dr. Reddy walked by.  She was quite pleased with his progress and, I suspect, was most thrilled about his fluid balance for yesterday.  (negative 140 or so) 
I have to wonder if this chance encounter this morning had something to do with the change in plans. 

 This morning's walk was even MORE exciting and special because Spiderman was cleaning the windows!  So fun!  Tiernan arrived just as promotional photos were being taken, so he may get to be in some sort of publication.  They said they would email us any photos they took.  Apparently this only happens about once per year.  We were very fortunate.  We also spent the next 30 minutes stalking Spidey from floor to floor.  Superman was also around but Spiderman was the definite favorite. 

So, back to the big news of the day.

After being NPO (not allowed to eat anything after midnight (so, in reality, 8:30 last night) and no liquids after 9 this morning) and all ready to roll, the team cancelled the cath at the eleventh hour.  When they came to chat with us, the reasoning was, as I had hoped, that they felt he was doing so well over the past few days since the cath had been scheduled.  They like his fluid balance, he is acting quite well and his food intake is next to normal.  So they are awaiting comment from Dr. Hanley regarding how he feels.  I don't actually think he will advocate for them doing one.  Following the past echo, the gradient was determined to be pretty close to normal as well.  (maybe this is indicative of the improved and normalized flow?)  At this point I gather that the risks, perhaps, outweigh the benefits.  He wouldn't be big enough for this to be the last stent he would require.  All in all, they really feel, as long as Hanley agrees, that he should work towards being off the O2 and maybe weaning the diuretics a little bit.  That also depends on Dr. Hanley, however, because the cardiologist said Hanley has a bit of an added investment in following and directing his recovery plan.  He insisted that Tiernan go home on an "aggressive diuretic treatment".  Apparently Hanley never makes any sort of recommendation for medication regimen post op.  He just leaves it up to the cardiology team.  (Lupe, the case manager, also said he would not be surprised if Tiernan's case were to end up in some medical journals.)

So. 

Unless Hanley wants the cath, we *could* be looking at discharge by end of the week, if not earlier. 

Woah!

Exciting but I'm not going to make any big plans just yet.  We should hear back from Hanley tonight or tomorrow morning so we will know more at that point.  I guess this news makes having to distract a very hungry 4 year old all day mostly worth it.