Getting this boy up and moving

The smile has made several appearances over the last 24 hours. Included in the growing list of things that make him smile are these great custom hospital gowns we have been given by several friends.  The nurses are all appropriately impressed with his fashion sense. 

 Tiernan is not known for staying in one place for long, so he has gained a reputation of being a mover and a shaker.  But he finds a way to get comfortable, and Panda sometimes pays the price.

 Tiernan does enjoy his story time with Daddy.  I love the hand.

 This morning Tiernan has been very busy doing things that would warm an OT/PT's heart.  In fact, I touched base with his beloved Miss Amanda (former OT whom Tiernan misses dearly).  She was equally as bummed about the tube stuff.  And wasted no time in suggesting we get moving with the oral stim.  :) So his nurse, Emily 2 (we had Emily 1 for the last 3 days) and I brainstormed some options that don't cause him to swallow much since CPAP increases the risk of aspiration.  The winner, I think, is this little suction tube that he can hold and bite on and get some stimulation in that little mouth.  I have pretty real anxiety that we will backtrack a lot on the eating. 

 Tiernan got out of bed again today and started working on some easy water coloring.  With his right hand pretty well tied up with his ART line, he worked very carefully and slowly with his left hand.  He was able to switch and hold with his right hand for awhile as well, though.  I was pleased to see that he was really trying hard to stay within the lines and has some good fine motor skills returning.  The Child Life therapists came by too.  She brought a few other toys for him to play with and hopefully she will be involved a fair amount over the coming weeks.  He is definitely more than a little sad and is getting more angry with me if I leave.  I absolutely was greeted with the stink eye and cold shoulder when I returned from breakfast.   This is, however, a good indicator that he isn't as foggy as he was, so this is all to be expected.  Overall though, he is still cooperative and charming.

Tiernan also had a massage therapy session this morning, which I know makes a certain Grandma Kathy very happy.  I even asked about Reiki (therapeutic touch) and it turns out all the massage therapists are also Reiki certified.  So that will happen next time perhaps. 

His PT also came by again.  Today she got him sitting up on the edge of the bed.  That is hard work for that core after 10 days of being mostly immobile.  He was relieved, I think, to be getting in different positions.

He also got to work on his standing.  He stood with much assistance for about 3 or 4 minutes and then moved to the chair.  He should be in the chair for about 3-4 hours per day.  Tomorrow, his PT thinks she will try to get him walking a little bit.  It may take a small army to get around with all his machines, but I think it is so good for him, both physically and emotionally.

ROUNDS:
We have NP Megan back and while we also like the other NPs, she is my favorite.  So between her and Dr. Reddy, we have the A Team for sure! 

Cardio Vascular:
No real change from yesterday.  His stiff heart just needs time to adjust to its new physiology...no minor task.  They are mostly happy with his numbers.  Obviously, as the heart relaxes, those numbers will also improve.  (BP, HR)
Interesting fact Nurse Emily 1 shared yesterday.  Apparently the vent favors the left side of the heart and helps those out a bit more than the right.  So typically, although the extubation at the earliest reasonably opportunity is always the goal, patients who have left sided deficiencies will have a more challenging time coming off the vent, whereas patients with right sided defects will not tend to do very well on the vent and will demand a quicker extubation.  So it is not at all surprising that he still needs the CPAP support. 

Respiratory:
X-ray is mildly improved over yesterday.  Specifically, the right lung is clearer.  The left is still a bit hazy.  He is diuresing (peeing) nicely, but could do better.  The goal is to have a negative fluid balance of -500 ccs per day.  This will help continue to draw fluid off the lungs and out of the tissues.  If they can get him down to about there, then they will consider removing chest tubes tomorrow.  They are hardly draining anything anymore.  He is still at a risk for pleural effusions so they may elect to leave one of them in. 

GI/Nutrition:
Patients on CPAP aren't really safe to eat and drink since the pressure support increases the risk of aspiration.  So they have wanted to put in a GJ tube to bypass the stomach.  They tried 3 times to get it placed but each time, it just coiled in his stomach.  So today, they are starting trophic feeds (only 5 mLs per hour) in his stomach to keep it down, but also avoid J feeds. 

IVs:
Since we are now on day 10 post-op, they are getting anxious to get the IJ line out of his neck.  I think everyone is in agreement on this one.  The longer it remains, the more we risk infection.   So today they will evaluate for a PICC line.  This is really the better option so hopefully T will continue his cooperation.  He is coming down slowly form his meds each day.  He is down to only Tylenol for pain and an Ativan/Dex combo for anxiety.  He still needs his Milrinone and Lasix drips as well as some intermittent Diurel (it's back again) and Potassium because of the diuretics. 

I think that is about it.  Everything is still going in a positive direction overall.  He continues to make progress every day. 

Tonight I am planning to go with Karen to do Deep Water Aqua Intervals at her gym. I am pretty stoked for this opportunity to get a good workout in.  I'm sure Tiernan will hold it against me, but he'll get over it.