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