19/2/17 – Day 68
Still no bed in PICU unfortunately. Even so Arlo’s actually had a fairly good day today. He’s had a few periods of being really awake and alert which was lovely. He’s well aware of the ventilator tube now (despite being on 30mcg of morphine!) and keeps trying to pull it out 😱 He is doing quite a few breaths for himself now and his rate has gone down a little but the Dr says because of the pressure his distended tummy is putting on his little lungs he probably won’t be ready to be extubated until that’s sorted.
We’ve been a bit wary of doing his cares recently because of how poorly he’s been but we’ve been pushing ourselves the last few days and today we’ve pretty much done everything bar changing his stoma bag, we needed a bit of help with that.
He’s had a dose of furosemide to try and get some of that pesky fluid off and of course he did his usual trick that he does every time he has diuretics and waited until his nappy had been quickly whipped away before doing a huuuge wee everywhere so he had a full bed change. His nurse decided to take the opportunity to weigh him at the same time and his current weight is 1.961kg. That’s 4lb5oz!! We think some is fluid but only a little. He’s more than doubled his birth weight! He does look much bigger suddenly. Feels like all progress has been paused for since Feb 1st and I think we forget he’s almost 10 weeks old now! 😱
In other news his crp is now 12.6! That’s almost normal so his antibiotics have been stopped. Hopefully he’ll have a bed at Children’s tomorrow but either way the surgeon will be coming to see him so we should have some sort of plan at least by this time tomorrow. I think they’ll suggest dripping a little milk in to see what happens. I’m not sure how I feel about that. I’m scared it could make any potential blockage or kink worse. On the other hand we need to get out of the limbo we’re in at the moment and maybe a few drops of milk might wake his gut up… who knows, I think I’d feel better if he at least had the scan to check for blockages first though. It’s difficult. All questions I can ask tomorrow though (probably repeatedly because this whole thing has made me quite demented 😆).
This was just after he was weighed today. This hat looked tiny when I got it out of the drawer, until I put it on him then it suddenly became too big! Don’t think he was too impressed with it. I love this picture though, it’s such a classic Arlo face, that pretty much says ‘you’re all ridiculous, now please give me some milk or just go away’ 😂