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.  :)

Time for a tune up

I can't believe I went a full day without posting to the blog! 

But there is a good reason for that. 

Nothing really happened yesterday. 

Day 19 was pretty much without excitement of any kind.  He walked some more, but only when his clever PT turned it into a game of hide and seek.  He ate really well and took in the amount of fluids they wanted for him. He was, as Dr. Reddy said, the only kid in the CVICU who is on point with his I's and O's.  (ins and outs).  Tiernan was more comfortable sitting up and playing and doing things than he has been and overall seems cheerful. 



 

 He had his first visit from the Speech Therapist, Meg.  She determined that, yes, she can hear his vocal cord trying to compensate and that much of what he needs to work on is breath support.  So, although it is difficult to see in the photo, she had him blowing bubbles off her wand.  (You can sort of see it right by her fingers, but there are so many lines and so much white that it kind of disappears) He just needs to, as Mr. Bradley would say, "give it some wellie" (not really sure how to spell that one...) and use his theatre voice.  Diaphragmatic breathing and all that. 
Oh, speaking of the diaphragm.  Apparently it is slightly paralyzed on the right side as well, but nothing they are concerned about.  It should rehabilitate on its own throught the other therapies.

 He has a "roomie", Ashley, who is 22 years old.  She is in congestive heart failure but pretty upbeat and talkative.  She thinks he's the cutest and tries to encourage him to take his meds and do walks.  He continues to manage well overnight in the few hours neither of us is with him.  This is almost as big a relief as all the medical stuff.  I am sure once he knows there is no reason we cannot stay with him (up on 3West or at home) that he won't let us go a night without him near us for awhile. 

This morning they woke him early to place a new PIV.  The reason being,  his WBC is slightly elevated.  Although he has not had a fever or any outward symptoms of infection, his numbers indicate the possibility.  He was complaining of slight increased pain at the incision last night so they don't want to be without IV access in case he needs IV antibiotics.  He does not have the IV currently, but they will be placing one today. 
The other big news from rounds was that Dr. Reddy honestly feels he needs to have his CoA stented in the cath lab.  Hanley had elected to leave it alone with its little 20 point gradient rather than keep him on bypass and in the OR longer than necessary 3 weeks ago.  But now, Reddy believes it is keeping him from fully recovering. 

Remember that his LV is slightly small and not used to doing the job on its own quite yet.  It has to pump blood out to the body against the CoA (pinched at the arch) which adds a level of difficulty.  If the ventricle isn't emptying as efficiently as it needs to, the mitral valve tends to allow some of the blood to regurgitate back up into the Left Atrium.  The gradient is the difference in BPs from above the CoA to below.  It is a difference of around 20.  So as they monitor and give meds for his BP, they have to keep the upper BP a bit on the high side in order to ensure a good BP and perfusion for his lower extremities and organs...specifically The Kidneys.  All of this would improve if they opened up the CoA.  And because Hanley didn't do anything with it 3 weeks ago, they are safe to go ahead and stent it now.  They would stent as opposed to balloon at this point because he has had it reconstructed and ballooned twice now, so clearly it is one stubborn CoA. 

As much as we would love to be moving up and out, I am incredibly thankful to Dr. Reddy and the entire team for their careful and conservative approach.  If he goes to cath it would likely be tomorrow. 
All of this time in CVICU, I think, should lessen the time he spends in 3West.  He is doing so well, and just needs a little tune up.  (Crazy to think that is how we heart parents look at a cath.)

Moving forward by leaps and bounds (and a little flashback as well)

Tiernan turned a big corner today.  It is very clear that he is feeling TONS better.

We went for a few walks.  He still isn't very excited about that kind of work, but he is improving daily, if not hourly.  Today he walked from the book carts out in the waiting area all the way to his room.  But this time he walked while holding Jason's hand instead of pushing the wheelchair.

 Today was his swallow study.  He was the ideal patient.  So cooperative, despite not really wanting to be.  (I think that sort of describes his entire recovery so far) And Jason totally rocked that farm animal x-ray gear.

 The results were pretty good.  I also think swallow studies are pretty cool to watch.  The x-ray is just focused at the jaw and neck and you see the liquid going down.  I can definitely say it is exciting to see the difference between regular consistency water and nectar thick consistency and applesauce. He didn't aspirate the water exactly, but it did sit on top of the vocal cords for a minute before sliding down the esophagus.  The more this happens, with the cord paralysis, the more likely it would be that he WOULD aspirate.  She is also pleased that he coughs during this.  It's a good sign.  Lots of kids don't register it and silently aspirate.  He did great with the nectar thick liquids and solid food is not a concern.  So this means we will be thickening his milk or apple juice for the time being.  Odwalla Fruit Smoothies are also naturally nectar thick, and, even though he was extremely resistant, I persevered and was able to convince him to try it.  And HE LIKED IT! 

Photo credit: Karen Vasser

As you can see from the plate, he also pretty much demolished a grilled cheese Sammy and some blueberries. For dinner he ate most of a breaded fish filet, some Alfredo Pasta and Nectar Thick Whole Milk  (meh).  He is on a calorie counting mission to see what he can take in by mouth.  If it all looks good, then they will d/c the NG tube soon.  We will keep it until there aren't gross meds like potassium and chloride that he will need to take in addition to all his heart meds and diuretics.

 

Speaking of those.  It appears we will be going home on some combination of Enalapril and Propranolol.  As well as the diuretic cocktail or Bumex, Aldactone and possibly Diurel. There will also be aspirin as usual.  In fact, this is why we are still in CVICU.  Dr. Reddy does not feel good about sending him to the floor, where nobody really knows him, when they haven't figured out his diuretic regimen.  Have I mentioned I love this team?

 

They also pulled out his POWER PICC today, leaving him with precisely ZERO IV lines.  WHAT?!!  This actually means he will need to have some more pokes.  Which stinks.  For sure.  But his white blood cell count was beginning to rise.  And despite being asymptomatic (no fever or redness) the PICC is a prime candidate for infection and that is NOT worth the risk.  Even though it means more pokes.  I will talk to them about using numbing cream or something.  He also doesn't need as many labs at this point. 

 

After so much great progress, what could be better?  A trip to the Kid Zone Playroom!  No nurses needed!  So cool.  And while up there, we got to see BOTH Lydia AND Nina! 

 So much to take in!

 Legos, it is.

 When we got back, after a walk from the playroom, standing in the elevators, and walking halfway to the CVICU unit, he decided to walk from his wheelchair and stand to play a little more.  Unassisted.  So. Much. Progress.  And he gets endless compliments about his cool scrubs.  Thanks again Walker!!!! 

And then there is this guy.  Dr. Tommy.  Seriously.  He never goes home.  Oh, I know he is in street clothes, and he claims he goes home, but he is literally here every day.  And most nights.  Sort of like another guy we know....

[flashback chimes] 

Hey Dr. O!

This was the last time he was in the PICU at Mary Bridge after a cath when he developed a clot.  Dr. Stefanelli didn't want to lose the vessel for future caths so T was put on a heparin drip.  That meant PICU.  He was the healthiest kid in the unit and they had to go find all sorts of toys and things for diversions.  But, as usual, Dr. O was there and ready to help entertain. 

 

[present day]

The ONLY problem with Dr. Tommy is his unfortunate loyalty to the Oakland A's and 49ers.  And the fact that his imaginary house has access to a big Haas Avocado tree (he says he will bring me some tomorrow.)  Oh, and he has taken pretty great care of my kiddo.  So we will forgive his sports transgressions. 

 

The biggest transformation has been in Tiernan's personality and emotional well-being.  He is finally acting like himself.  He is being silly, and sassy, and has endurance for play and increasing activity.  He has been so unwilling to even have me play his favorite music, I think because he couldn't really enjoy it.  That made him sad.  So today he finally requested the "new version of Let It Go".  (Meaning the Demi Lovato version.  It is different because there are more drums.)  He was lying down on his bed kicking his legs and smiling a giant smile.  Just so happy. 

 

 Photo credit: Karen Vasser

Photo credit: Karen Vasser

Frustration should always be tempered with a healthy dose of perspective

Let's start with the good news, shall we?
Tiernan is off high flow and on to regular nasal canula.  He is on 60% O2 and his SATS are holding steady at 99-100%.  So amazing. 
He is feeling better overall today and he even WALKED (while pushing his wheelchair) all the way out of the unit and took the elevator (still on his feet) to the train.  Another PR!  Sweet!!!
And now for the bummer type news.
He had to have a visit from the friendly neighborhood ENT (ear, nose and throat).  His voice is still raspy and quiet, so they did a scope and found that, due to all the work Hanley did around the area, his left vocal cord is paralyzed for the time being.  His right cord is already compensating (moving over past midline to close against the left cord)  This may be something we need to continue seeing a specialist for after we get home.  Likely as not, he will not need a tube long term, or even after discharge.  We will know more tomorrow when we have a swallow study at 10.  The concern would be that he will aspirate while drinking. We have primarily been spoon feeding him his drinks because he had been coughing when trying through a straw.  But yesterday and this morning that had seemed better to me.  He was still coughing intermittently, but it is difficult to tell whether it is and aspirating cough or a residual vent/respiratory cough. The OT who came by did not feel he had any trouble with solid foods; only liquids. 
I am a bit frustrated by this complication, mostly because of the tube sticking around still.  But in the grand scheme of things, if this is the only complication he has following this massive surgery, then he is extremely fortunate. 
The only other notable happenings today have been trying to schedule his new meds.  It will be a little more complicated than before, due to the addition of the beta blocker, Propranolol.  This really shouldn't be given within 2-3 hours of the Enalapril.  The Propranolol is to be given 3 times daily and Enalapril is every 12 hours. So if we are trying to avoid middle of the night doses, then we will be giving meds at (in military/hospital time) 6:00, 10:00, 1300, 1800, and 2200 hours.  In addition, we will want to be more aware of his BP at home.  So we will be in search of a good child size cuff to calibrate to the hospital machines. 

In the category of Carrie's Mental Health, I got to have a nice visit with local-ish heart mom, Jennie and her super adorable Tyler.  They are LPCH veterans and, as always, I love getting an opportunity to talk with and commiserate with other moms who "just get it."  Thanks for making time to hang out, Jennie!

To close, I don't want to jinx anything so I won't come right out and say it, but the number 3 and a reference to the West have been heard on occasion today.  Most recently in combination with the word Wednesday.  I shall leave you to your own imagination as to what that all means. 

A Super Day

 Tiernan tried out some cool Batman jammies today.  I think Dr. Hanley also stretched him while in the OR because the shirt is tooooo small. 

 Oh.  And I think this is the smile of a boy who doesn't need that annoying CPAP anymore!  Woohoo!  He has already weaned down to 4 on the high flow canula too.  Which means that he could just as easily be on regular O2 now.  I think tomorrow would not be a crazy goal for that.

And then THIS happened!!!!!! 

He got special clearance from Dr. Purkey to go off floor, and out to the fountain!!!!! 

And to the super rad electric train!   Unfortunately it is Sunday though, so it wasn't actually running.

 But he was definitely willing to get out and check out the underwater bit (my favorite part).
Tiernan still isn't a giant fan of walking, but he PR'd once again and did not one, but TWO walks today.  The first walk he went all the way to the far doors (that was his PR from yesterday) and then back around to the door on the other side of the CVICU and then back to his original room (which is 2/3rds of the way back to the far doors) and then back to his current room.  That is about 6 times farther than yesterday.  His second walk was a bit shorter, maybe half that distance, but he was probably still worn out from the earlier marathon.  PT will be so proud tomorrow!

Obviously things are going pretty well today.  He even got freedom from the IV pole.  No more constant drips.  The only IV stuff he is still getting is the Bumex (diuretic).  They can just hook him up for that intermittently.

His eating and drinking resulted in his fluid balance being the best it has been in many days.  Go figure.  He finished last night by dining on Spaghettios and felt great.  This morning, however, we tried scrambled eggs and he took one bite and threw it up.  I think it was a texture thing primarily, but his tummy may have also just been a bit touchy that early in the morning.  By lunchtime he was ready for more Spaghettios and blueberries.  He is drinking milk like a champ but also wants a lot of water.  Unfortunately his sodium levels are a bit off now though, so the docs have said no water for awhile.  They really want him to drink juice or Gatorade or Pedialyte or soda.  But he refuses all of that.  Normally I am very happy about this, but today it would be helpful.  Oh well.

The unofficial echo results are that the repair still looks great.  He still has a diastolic and systolic murmur.  I got some clarification on what that actually means.  The diastolic has to do with the filling of the LV.  So there is a murmur through the Mitral Valve which is a tad smaller than average.  On the last echo it showed a slight increase in the gradient since surgery.  (was 5, had gone up to 7-11)  This echo showed it down to a 5 again.  That is fantastic because it is the same as when Hanley finished in the OR and he was happy with it then.  His systolic murmur has to do with when the LV pumps the blood and the aortic valve being a little smaller than average.  Hopefully these will improve with time and growth.  Still, overall, it is a good result. 

Tiernan's x-rays continue to improve daily so that is another great indication that things are moving in the right direction.  I would love to say we might get to 3West in the next few days, but who knows.  This team is playing it safe and slow, which is never a bad way to go, even though it can be frustrating for an impatient person such as myself. 

In the meantime, I got to get out a little this morning with Karen to a great farmer's market.  We bought some delicious fresh fruits and veggies as well as some delicious indian things for my meals.  I had some scrummy dim sum and an amazing latte from Zombie Runner.  A combo running store/coffee shop!  Brilliant!    Jason is having dinner at their house this evening so he can have a chance to feel normal.  Thanks again to the Vasser family.  We are so fortunate to know you!

Dr. Amy gets to be the favorite one forever

 

Because she let him EAT!!!!! 

 Okay, so she just happened to be the one on service when he was finally deemed ready to eat, but still, she is going to get the credit.  Along with Dr. Cisco I guess.  This has been too long coming. 

 This picture makes me so happy because his silly little personality is shining through.  If only a giant bowl of mac and cheese could make him so deliriously happy from now on. 

Backing up to yesterday, the change in him after losing that final chest tube has been enormous.  Almost immediately, he got himself into this position.  He has been more or less unwilling to use his core muscles for anything since surgery, and I think it is safe to assume the chest tubes are the culprits.  From what I am told, they are the pits.  (massive understatement)

 He even felt motivated to sit up and work a little on his new firetruck Lego set from Jason's high school friend, Nan.  She came just after the tube was removed and he was so jazzed and ready to go.

 Today he started out pretty hesitant and cranky.  He sleeps pretty well at night and so last night we tried out a new sleeping plan.  We figured I could walk to RonDon easily enough around 8 and then J would drive there around midnight.  I would drive over around 5 and J would walk over when he woke up.  And even if Tiernan did have a hard time, they could call us and one of us could get there in under 10 minutes, door to door.  So we took the risk and it worked out.  His CVICU nurses are so wonderful, and he is not anxious, so they say. 
But by the time I got there, X-ray was only just arriving, so at that point he refused to go back to sleep.  And he was demanding his water ration.  He blew through that in no time, and was mad for the rest of the time.  I negotiated more from Nurse Courtney.  She was an easy sell, since to her his lips and tongue looked dry.  Not cool. 
By the time rounds rolled around, we were prepping him for another walk, and he was not pleased.  The docs all agreed that the time was at hand for keeping him on high flow for the day and allowing him to eat and see how he would tolerate it.  So we promptly ordered up The First Meal, and went off on a walk.  He PR'd by more than doubling yesterday's walking distance.  (FYI, I waaaay underestimated yesterday's accomplishment.  He actually walked about 75 or 80 feet)  Then we let him sit in the chair and wheel around the outer halls. 

 As you can see, he finds the wheelchair quite comfy. 

 

 

There really is not a lot more to report that trumps the above news.  This is an enormous step towards the 3rd floor. 

They have also d/c'd the Milrinone and replaced it with Enalapril.  His Propranolol is still doing it's job and all those numbers look great. 

They did switch out the Lasix with Bumex (Bumetadine). They felt he was maybe developing a bit too much tolerance of the Lasix. 

I do find myself wondering how we will get him potty trained again, though.

 

He had his official post-op echo today, so I'll be eager to hear what they say about that. 

 

In the meantime, I have been fortunate enough to connect with a few other heart moms, Sally and Lani.  It is beyond wonderful to have someone to talk with about the emotions and everything surrounding this experience.  (In addition to Jason, of course.) And so, last night Lani and I went out for a drink and dinner.  We got a recommendation for a good Mexican place here that has Mariachi on Fridays.  Great! Or so we thought, BEFORE we actually thought it through.  hahaahah.  

 

Not really conducive to conversations.  They were really loud.  Really.  Loud.