Tiernan did a quad workout today

 

This might be a kid who is super happy to have the CPAP mask off for a few minutes. 

 Or it might also be a kid who is refusing to look at anyone and thinks he is pretty funny.

Tiernan is rocking the PT thing today.  He gets this cool chair to use for his squat intervals.

 

 

Tiernan is physically doing all the right things at the moment.  He continues to pee like a champ and is keeping his fluid balance in the negative....two thumbs up.  In fact, at one point, NP Megan called him an over-achiever.  His x-ray looked awesome this am.  So with everything looking good in his lungs, they went ahead and moved down to a CPAP of 6.  And THAT means he can take some breaks from the CPAP mask and spend an hour or so on high flow (HF) again.  That is the mask he has on in the PT picture and video.  He could also, should he so choose, talk more on the HF.  He still doesn't have his full voice back but it is on its way.  He has talked a few times to ask if he could watch Rescue Bots and to name his pre-school friends in a picture they sent.  Other than that, he is not highly motivated to talk.

 

From a CV standpoint, he continues on Milrinone and will likely switch to the oral form, Captropril soon.  Enalapril is another form of this med and so I'm not at all surprised that he might stay on that.  His heart is happier with it on board.  They are continuing to diurese but not as aggressively. 

 

2 of his 3 chest tubes are coming out today.  This is a huge step towards mobility and comfort.  He has not been particularly irritated by these, but it will make such a difference to get them out so he can move more freely.  The 3rd one is still draining a minimal amount but they want to play it safe and keep one in just to avoid those effusions. 

 

They got rid of the IJ line last night.  Woohoo.  That is the ART line in the neck and it is pretty annoying to have to always be careful of that.  He is the proud (?) owner of a "POWER PICC" in his left arm.  Apparently only kids get the Power Picc.  Adults don't get something that sounds that cool.  (Hello medical marketing)  This is a long term IV that is way more substantial than a wimpy little PIV that has no staying power.  It is a way better option.  In a few days they may even pull the last ART line and then the PICC would be the only line.  Awesome!

 

GI is still via NG tube.  He tolerated his trickle feed so they have upped the rate to 10mLs per hour of Pediasure.  Livin' on the wild side now.  They are also transitioning to oral Tylenol.  And by oral I mean through the tube, not IV.  One more step towards 3West.  (They can't be on any IV meds there.)

 

Is anyone as amazed as I am that he is a mere 11 days from MASSIVE open heart surgery and he is only on TYLENOL for pain control??!!!!!  Seriously!  He's totally comfortable.  I am incredibly thankful for that. 

 

Emotionally, Tiernan is still just bummed out.  Megan was asking about how we might help him, but also mentioned that there is a real thing involving depression post heart surgery in adult patients.  (can't recall what she called it).  It is not at all surprising.  I know that he will bounce back when we can start moving around the unit and out into the hospital.  When we can get out to the fountains he will be on Cloud 9.  In the meantime, he is still on Ativan but weaning off the Dex. 

 

In related news...we finally got a room at RonDon!  Jason will move our stuff over today at 3.  So excited to have a private place to unpack our clothes and take a shower and get a good nights sleep.  I did talk to Grace, our SW to see if we can please keep a sleep chair since the RonDon is still a bit far for both of us to be at night.  She seemed to think we could make that happen.  That way, we can alternate and have one person stay each night.  If no sleep chair, then I guess one of us will just camp on the chairs out in the common areas. 

 

Jason has been really good about going over to the Stanford gym (we were given guest passes) pretty regularly.  Today he went for a good run.  I haven't been super amazing at this, but Karen did convince me to join her at her gym for Deep Water Aqua Intervals last night.  I'm not sure how many calories I burned (certainly not enough to offset the Mrs. Fields cookie addiction I have developed) but it was incredibly lovely for my soul.  We went in the steam room afterwards as well and I returned to Packard feeling quite relaxed and refreshed. 

 

Thank you again for all the amazing cards and gifts.  It is such a boost to the spirit to see all of your well wishes.