Day 140

2/5/17 – Day 140

Latest weight is without deductions I think so I need to double check that later, he’s definitely over 7lb now though!

Home very much on hold for the moment unfortunately… Tricky things first. Arlo’s weight gain had been static for the last week so his milk was changed on Wednesday to Infatrini Peptisorb. He had his first bottle at 12pm and at 4pm I took 51ml out of his stoma bag. That’s about how much usually comes out in a whole day! So not good. He’s allowed to lose 25ml per kilo, per day. Which for Arlo is roughly about 80ml. Anything above this needs to be replaced via iv fluids. Obviously he quickly went over this but he was given another day to see if it would settle down. It didn’t. Friday his total output was over 120ml so he’s had to have a cannula put in and he was on a drip until Sunday. He’s also had his milk changed back to Pepti Jr and that seems to have settled things down quite a lot. Good news is his losses have settled back down over the last 24 hours and the fluids turned off so hopefully that cannula can come out later.

Other very good news is that he’s out of isolation! All of his swabs since he arrived here have come back clear, no serratia! I’m so pleased about this. Knowing he will be having surgery soon and was carrying a ‘superbug’ was making me really anxious plus it means he’s out of the intensive care bay and in bay A with a bigger cot with a mobile and his lovely sensory lights. And, really really good news…

Arlo’s been on lots of meds for ‘conjugated hyperbilirubinemia’. His last full blood count 2 weeks ago showed his levels were 103. Well this week we’d all been saying he looked less yellow. The nurses who’d not seen him for a few days could see a real difference and sure enough his levels from his most recent count have come down to 30! Still need to come down a bit more but 30 is brilliant! He’s also still mostly managing without oxygen at the moment, although if I’m totally honest I’m not convinced he doesn’t need it, he sits at 89/90 when he’s asleep. He’s having a sleep study today or tomorrow though hopefully so we’ll see and then we can try and get back on track for discharge…

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The other very exciting thing about being out of isolation is we get to do things like this 😁 Yesterday we went for a little stroll round the unit for the first time in their pram (he couldn’t go in it before because it’s for all the babies and infection control). Arlo loved it! 😁 He’d been a bit grumpy because his feeds have been lowered and he’s hungry but he went straight to sleep. It felt so strange to be in the parents room with him, but so so lovely 💛

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