I have no clever title for today's post.

Yesterday was a day of big ups and big downs for sure.  He started out the day with some good news from x-ray so the team decided to give him even more break time to high flow.  He did really well for the majority of that time, and even did more walking and driving.  His PT, Eilish is happy with his progress.  It is hard work for the little man though so he's not always as happy.  He would have liked to just go right back to his bed where he can lounge around in positions that don't make him work so hard.  But instead, Eilish and Nurse Alyssa rearranged his room so he could look out the window at the new hospital construction.  There are two giant cranes out there that provide some pretty cool entertainment for this guy. 

He was a pretty satisfied kid with his ice chips and even tried some popsicle, but I think he's mainly just thirsty so the ice chips did a better job of quenching that.  However, he got carried away and pushed his fluids positive even further and the NP said he couldn't have anymore. 

Well, that was it for any good mood for the rest of the afternoon.  Poor kiddo was so upset.  I tried using the oral care kit so at least his mouth wouldn't be so dry, but he was not buying it as a replacement. I got pretty emotional right along with him but once I was under control I suggested maybe he could tolerate a 3 mL per hour lower feed to allow for a little bit of water each hour.  They didn't want to sacrifice calories (how many calories with that really be???) but acquiesced and allowed him a ration of ice chips every hour.  You would have thought they'd said we were going home given how happy he was.  It got tricky to convince him that he could only have that little bit, but I think he finally figured out that some was way better than none. 

Dr. Hanley came to visit as well.  He is very pleased with the repair and reminded me that his LV is just adapting to its new increased job.  He still firmly believes it was the best option for Tiernan so I am still confident in the plan.  And as another mom reminded me yesterday, it is a marathon, not a sprint for these Bi-vent kiddos. 

I am still awaiting x-ray results this am.  But his fluid balance at present (6AM) is +80.  This had me a bit deflated because he is maxed out on diuretics and they can't seem to get him negative.  It's like his body has decided it will not give up that much fluid, regardless of medications.  But then his nurse told me the team had changed goals and wanted to just keep him under +200!  So now I'm a bit more relaxed. 

I am listening to the CPAP machine play it's little alarm that says air is escaping because he won't breathe through his nose. 

       Mi            Mi                              Mi                Mi

               Do            Do                            Do                 Do
So                                     (rest) So


And then there is the Line is occluded alarm that plays:
Do                   Do

        So____             So_____

But it is in a different key. 
Not a compatible key.
I'm pretty sure it is a diminished something higher. 
My brain can't even differentiate because it clashes so horribly.
And, naturally, they happen simultaneously.

I'm now wondering what a composition of all the alarms might sound like.  I'm pretty sure my dad should get to work on that.