Wednesday, May 14, 2014

Morning Rounds Update

Rounds this morning were encouraging, but won't result in any immediate changes to Chase's comfort per se. His chest tube drainage is trending down (yay!), so there's a chance one may be pulled tomorrow or Friday. The drainage looks good but it's VERY hard to put a tube back in if needed, so they'd rather be conservative and give it a few more days to be super sure.

They've decided to discontinue his Milrinone (heart med) once the current bag is empty. It's on the lowest dose possible and really isn't providing significant value. He's still getting fluids through the central IV but they want to discontinue that as well and let him handle his fluid intake with drinking/eating. This means we're close to losing all of the IV lines, but the IV itself will stay in until all chest tubes are out. The tape holding this IV in place has been one of if not THE biggest source of discomfort for Chase. He'll be so excited when that thing is gone!

He's still on 1L of oxygen but they plan to wean him down to 1/2L soon. It's a delicate balance because we want to keep his o2 above the threshold, but with these chest tubes in, kids don't usually breathe very deeply (due to the pain) so we don't expect his o2 sats to jump up much until after the tubes are out.

We are still awaiting the results of the blood in his stool. It was a bit firm so they're thinking he may just need more stool softener to make it easier on him. Hoping it's that simple to address!

So a BIG praise report from this morning... Chase ate a small bowl of cocoa puffs and drank a pint of milk!! This is in addition to a few bites of a Krispy Kreme donut and a Pop-Tart! Yay, Chase!!!

We also have him on a solid Tylenol/Oxycodone regimen rotation every 2 hours and it seems to really be helping with the pain. He rested for a bit and then we played with bubbles, a new Toy Story RC toy and a Toy Story puzzle! He's acting much more like himself. Still VERY MUCH not wanting to be here, but much more like the stubborn Chase we know and love!

Our goal for this afternoon is to get him out of bed and moving around. This means a trip to the Atrium (play room) around 2PM today. Please pray he tolerates being out of bed and in a wagon as we head downstairs. I'm hopeful getting him out of his room will be a big encouragement to him!

Thanks so much for the continued prayers for our sweet boy!!!!

Post-Fontan Night 5

Wow. It's been over 4 years since our last stay in the cardiac step-down unit with Chase and apparently I must've blocked it all out of my memory. It's amazing how quickly it all comes flooding back though. There is absolutely no reasonable expectation of one getting any amount of sleep on the floor. Period. If I wasn't so sleep deprived I would probably find it comical. But I am, so I don't.

Luckily Chase had a few decent bouts of rest last night. He had his chest x-ray around 4 AM and was up to potty a few times. He had some blood in his stool so we've got to do some extra tests to see what's going on there. Please pray it's nothing serious.

We're having a hard time managing his pain since we no longer have access to morphine or versed up here. We're anxious to give him Oxycodone due to his previous experiences but it's really our only option besides Tylenol. We gave him a half dose at 7 AM to see how he handles it, and so far so good. We're hoping to get him eating a bit this morning so when he's due for another dose of Oxy at 11 AM, we can try a full dose. We need to stay on top of his pain, especially if we want to get him moving, which we definitely do!

We expect the doctors to round soon so we can hopefully get some answers on what our game plan looks like for today. It seems as though his drainage continues to decrease but I'm doubtful they'll want to remove any of the tubes. I've heard the center one is the most painful and kids usually start to feel better once it's out, but since he hasn't really started eating yet, I'm not sure it's even something they'll consider.

More to come after rounds...

- Posted from my beloved iPhone