Day 94 & 95

18/3/17 – Day 94 & 95 because I started writing this yesterday and got distracted.

We’ve hit another little rocky patch unfortunately. Arlo has another infection. This time in his surgery wound we think. The surgical nurse and I both checked it Wednesday midday and it was perfect but by 5pm 2 little pus filled spots had appeared. We kept an eye on them overnight and 2 more popped up by morning plus the surrounding skin went quite red. So he’s been started on flucloxacillin and gentamicin. Also had a septic screen. Crp is 35 but as he had his immunisations Tuesday that could be playing a part in the crp.

Fortunately so far it doesn’t really seem to be causing him too much bother. He did have a pretty big desat Thursday down to 40 which scared the bejesus out of me but we think that may have been because of a loose connection on his Optiflow. Then later on he had a brady, which again terrified me. I was dressing him and he was wide awake then his eyes closed and his head just flopped to the side and oh it was just horrible but he’d just been disconnected to be weighed so possibly because of that and he’s been fine since so trying to not worry too much. Trying and failing obviously..!

We were moved rooms again Thursday. We’re now in Lavender (So far we’ve been in Iris, Orchid & Dragonfly) an intensive care room right back at the end of the unit. The furthest from the doors! We haven’t been moved because he needs intensive care though, it’s just because Arlo is isolated because he tested positive for serratia so he was on his own in a side room but there are 3 other baby’s who also have serratia so they’re all together in one of the intensive care rooms which frees up the side rooms.

Thursday night we had our first stoma bag incident. His bag got very full and fell off. Poo everywhere! We’d just been moved rooms and there was already quite a bit going on so I had to sort him out almost solo. I was pretty sure I’d done a crap job (lol!) but the surgical nurse checked it yesterday and said it was fine so 👍🏻

Today Arlo’s had another blood transfusion. His HB has been around 95 for a few days and though it didn’t seem to be causing him any huge issues it was decided he’d been on the low side for long enough really so hopefully this should give him a bit of a boost.

Breathing wise he has actually started to make some progress! Yesterday his oxygen requirement just, almost out of now where really, came down from 40ish to mid 20s and he stayed there happily all afternoon so his Optiflow was turned down to 5L to see how he’d manage with that. He’s been fine with it overnight and all morning so this afternoon it’s been turned down again to 4L and he’s STILL maintaining sats above 95 and is only in about 28% oxygen. This is huge for Arlo because he has Chronic Lung Disease and that extra month on the ventilator through illness really has not helped with that plus considering he has an infection and his HB has been low you’d expect his oxygen requirement to go up slightly if anything, as we know though Arlo really is Mr. Contrary Mary! 😄

There’s a few other nutrition/stoma related updates but this is going to be insanely long if I write about those too so I’ll explain about all of that in another post.

Last thing, today the long line in his arm finally came out! It likely won’t be out for good but it’d been in for quite a while now so needed to come out really and there’s the added bonus that I got to dress him in a normal babygrow today! One in tiny baby size that I’ve waited 3 months to finally put on him. I almost cried 🙈 I remember choosing this babygrow though, before he arrived, and day dreaming about dressing him in it. Feels wonderful to have finally been able to put it on him. Pictures are a bit rubbish sorry but look how gorgeous he looks 💛

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