Pre-school, Pumpkins and Potential Problems

I can't believe 2 months have passed since my last blog post!  A lot has happened but none of it seemed necessary to blog about at the time. But here it is. 
Tiernan and I spent most of September in a modified quarantine and both were MORE than ready to jump back into school with both feet!

We stopped in for picture day and he had such a blast with these crazy boys. 

Put a tie on this kid and he immediately decides he is the most important guy around. 

Tiernan and his buddy Landon had a great time playing while waiting their turn for photos.

Tiernan had his peeps: Adrian, Alex, Nicholas, Vivi and Elizabeth.  (By the way, L is only 3 in the picture above this one....shows how tiny Tiernan actually is when compared with his friends.)

Tiernan was feeling so good about getting back to pre-school.  His frist day back brought out his sassy side.

Our awesome friends (who are really family) The Whalens, found this perfect firefighter costume for T and knew he had to have it.  He has worn the coat to school every day since then. 

 Tiernan got double the pumpkin patch fun this year too.  We went first with our Mended Little Hearts group.  It was such a great day with his heart buddies. 

T, Alex and Christopher after romping around in the room of corn.  Corn is dusty.  I had no idea.

Tiernan found this duck race to be hilarious.  That kid loves ducks.  haha.

 What joy it brought to see these three boys taking on the corn maze together.  What a crew.  I am so thankful for all the heart mams in my life. 

Our fearless corn maze leaders: Luke, Tiernan and Alex.

Next up was Tiernan's pre-school trip.  Since I have next to no sick/personal leave to my name, I relied on my friends who made sure to get some good photos of him. (Thanks Mendy and Carmen.)  

Wow!  Half way up the white pumpkin this year.

Tiernan and his sweet friend Vivienne.  They sure missed each other.

These two found a great slug to investigate.

This little monster was hiding behind the bush at pre-school.  I decided to catch him and keep him.

 Tiernan was looking so forward to Halloween this year.  He was...wait for it....a firefighter.  He wore his full costume to pre-school for their party and, because he wears the coat everyday, Vivi asked him where his costume was.  Ms. Kay told him no one would think he was dressed up.  :)

Tiernan was absolutely the brave one of the group when it came to Trick or Treating.  Tristan and Michael were not nearly so confident at some of the houses.  But T2 marched straight towards door after door and faced some rather fearsome characters, but was only really startled once. 
"That guy scared me right off the step!  And some of my candy fell!"

At most houses, however, he just struck up conversations and enjoyed meeting any dogs who might come to greet him.

He brought in quite a haul.  More than his brother, and so heavy, he needed help toward the end. 
The most wonderful thing about the entire night was that he walked the entire time (save the last block and a half) and was not out of breath.  Last year he rode in the wagon from house to house.  (Very likely burning more calories and energy climbing in and out of the thing every 15 feet, but he was definitely purple and breathless.)

In medical news:
Tiernan has had a lot of appointments with many different doctors.  Some new ones as well as old favorites...including this dude.  Dr. Pickens is back on the job to help Tiernan gain some weight after surgery.  It has been slow going, and with the fluid restrictions and thickening throwing in some extra challenges, he has only gained a little of the weight back.  (He had finally made it to 38 lbs when he went into surgery, and he is just now back to 35.8)

Tiernan also sees Dr. Hanevold now as well.  She is a nephrologist, or kidney specialist.  He is on such a heavy diuretics regimen, that Dr. Park decided it would be best to have her involved.  She spends a lot of her time dealing with kids on diuretics, and he WAS technically in kidney failure.  So she now orders and reviews all the blood work which plagues this kid's life.  He is currently on giant amounts of Potassium Chloride pills to keep everything in order.  If his electrolytes were to get out of whack, then we would start to see some heart rhythm issues.  We definitely don't want to add that into the mix. 

From a cardiac standpoint, a month ago, things were looking incredible for those four chambers of his.  We knew, even by this point, that a valve surgery would be in his future, but were hoping things would last a good 10 years before that became necessary.  Current replacement valves don't grow with a patient, so any replacements in children are only temporary until they are old enough for an adult sized mechanical valve. 

The upper right part is the left atrium being measured at last month's echo.  

Here is the same view from last Wednesday.

His left atrium is quickly becoming dilated from the regurgitation through the mitral valve.  This is pretty disappointing.  The implications of this are that his heart cannot handle the amount of leakage like we hoped it could.  Dr. Park elected to first try him back on Enalapril. (Blood pressure med)  However, while inpatient, Dr. Reddy was not happy with how low it brought his pressures and took him off.  So we were told to keep an eye out for signs of dizziness, generally low energy, etc...

The first dose was Friday. 

I gave it in the morning and by the time I got there at lunch to give his meds, he was complaining that he didn't feel so well.  And then by the time I arrived to be there for the halloween party, he was sitting in the middle of the carpet, pale, and not participating in any of the party activities.  He looked at me and again said he didn't feel well. So we decided to skip the party and head over to see Dr. Park instead. 

Well, by the time we arrived, he had pinked up a bit and his energy was up.  His BP was a solid 96/58 (or something right around there) so we knew that was okay.  However, in order to really rule out the enalapril as the cause of this, Park told us to d/c the med for the next week and then give it again next Saturday.  If this happens again, then we know he won't tolerate the dose.  If it doesn't, then Friday was a fluke and we continue with the Enalapril. 

Please pray for the second response.  He needs the medicine. 

Regardless of whether or not he can take Enalapril, he is going to need that valve repaired or replaced much sooner than we had hoped.

And, while you are praying, add one regarding my insurance.  Last time it was covered because Hanley was the only surgeon who could do it in our area.  This valve would be different.  Our local surgeon, Dr. Chen could perform this surgery.  He does them often.  But I really would rather not have a 4th different surgeon opening him up.  Hanley did such unique work in there, and he would remember it.  Another surgeon would not know the intricacies of the patches and, although that doesn't mean they couldn't successfully deal with the valve, it does mean that Hanley could do it better, in my opinion.  So we pray that Chen will write a letter stating that Hanley is still the guy for this job, whenever that may be. 

Overall, though, Tiernan is still doing GREAT!  Dr. Park just wants to treat any changes aggressively to stay ahead of things. 

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. 

We're movin' on up....to 3West side...

We have a new addy!!!!!  3 WEST!!!!!  Hooray!  The CVICU team sent us up around 10:30 this morning.  We were not expecting this today at all.  In fact, I thought for sure they would just keep us until after the cath.  Yesterday his x-ray was way worse.  So much so that Dr. Reddy was advocating putting him back on high flow.  The PA, Elizabeth, decided, and Dr. Reddy agreed, to let us work on getting him up and moving around more, adding chest percussion and being really careful about his diuretics and nutrition.  When I came in this morning, Elizabeth stopped by around 7 and asked if I'd seen the x-ray this morning.  I was worried and asked if it was worse.  She said NO.  It's much better, actually.  So I guess this was enough incentive to get us on out of there! 

 

But don't get too excited.  We have the cath scheduled for Monday at 2pm.  (bummer of a time for procedure.  He'll have to be NPO (no food after 6am and clear liquids until 11)But it will be worth it for his little tune up to take place. 

 

My cousin Scott, who lives in Redondo Beach, CA, came up for a visit yesterday.  So great to see him.  And he brought this crazy toy.  It's these little "bugs" that vibrate their way up and around the tubing.  So hilarious! Tiernan played with it for a good 2 hours last night and quite awhile this morning.  Thanks Scott!

 Yesterday, in an effort to get those lungs working better, we went on several walks/rides.  He was pretty excited to go to the gift shop. 

 The thing about living in an ICU of any kind, is there are a lot of wires and tubes everywhere.  I haven't really held this super boy since early on the morning of the 18th.  We are finally free enough to snuggle a bit. 

 Super T found his new room in a flash and was so excited.  Look at those skinny legs!  hahaha

 And then, finally, PET THERAPY DAY!!!!  He has been anxiously awaiting this day for 2 weeks! He was so happy to hang with those sweet pups.  We also got to have a "date" with the lovely Lydia, who is also from Washington.  (about 45 minutes north of us).  She had her Fontan the Friday before Tiernan had his surgery and has been patiently waiting for her tubes to stop draining.  We have been so excited to be up on 3 so we could visit.

 Tiernan, Lydia and Nicky

 Lucy

 Nicky

 I absolutely believe therapy pets are amazing.  I'm so glad they have this program here.  I also think I would like to look into raising a therapy dog and having Tiernan be a part of the team so he can share strength with other kids through his story.  But that is a bit down the road. 

 After the puppies, Tiernan still had enough energy to go to the playroom.  He is walking and moving around better and better each day, but he still isn't super stoked about it.  It's still difficult and he would really rather not.  hahaha.  It should make it easier being up on 3 so we can just walk down the hall to the playroom each day. 

Of course, he is totally worn out now and sleeping.  Jason is taking the first night shift (we can sleep in the room with him now) so I hope this late nap doesn't mess things up too badly. 

I am thrilled to be out of CVICU for many reasons.  (not the least of which is I get to have my coffee IN the room now!!!!) But we now have to get used to having roommates.  Our roomie right now is a baby who is awaiting a G Tube and Nissen surgery.  Poor punkin cries and cries.  I think she just pulled out her NG tube and so there were several nurses working to replace it just now.  She was NOT impressed.  And oh man, that sound brought me right back to Tiernan....The Early Years.  Not pleasant memories. 

After the cath on Monday, I am really hoping we aren't far from discharge. Doctors won't predict, but if this does what it should do, then he is mostly ready anyway.  Just need to ditch the O2 for good and get his meds regulated.  Everything else, in my expert opinion, can be done at home.  :)