Day 66

17/2/17 – Day 66

Day 11 post surgery.

Time for another update. My memory is shocking at the moment so there may be some bits of this that aren’t quite right but I’ll try my best.

Working weight is now 1.741kg/3lb13oz! 😱 It’s definitely a little bit out though because of the fluid, poor guy is still so puffy 😞

The last few days have been difficult. My heads a bit all over the place so I don’t know how much of this I’ve already explained but Monday his belly blew up again and crp had risen. He was started on another antibiotic, Vancomycin, to go with the Meropenem he’s already on. Day 5 of Vancomycin today and day 12 of Meropenem. Monday night he was a bit more settled but Tuesday morning he went downhill again, oxygen went up, vent settings went right back up, heartrate went a bit crazy, he had to have his morphine turned back up and his aspirates from his ng tube that had started to clear went dark green again. They like the stoma to start working after about 3/4 days but this was day 8 and so far nothing so when the surgical nurse came to see him she placed a catheter into his stoma to check for blockages and to rinse it out. A ball of mucous came out but nothing much else. One positive was that his crp had dropped from 98 to 47 and his platelets had risen. The surgeon explained that due to the state of Arlo’s insides when they’d opened him up they were expecting this to be a slow process. He’d had to have a full wash out during surgery and there was a lot of inflammation/edema.

Thankfully he did seem to settle a little overnight Tuesday and Wednesday morning there was a tiny bit of watery ‘something’ in his stoma bag. It may have just been from the rinse the day before though. Either way we were excited, it had to be better than nothing, right?! The vent rate was turned back down (first to 50 then 45) and his oxygen had come back down to around 40/50. The Dr thought his tummy looked a bit smaller than Tuesday but bigger than Monday. He also said he could hear some rumbling which he hadn’t heard before so hoped things might be beginning to move. He had a scan of his tummy around midday and that didn’t show anything too unexpected, a collection of fluid and lots of air everywhere else. In the afternoon a different surgical nurse and the surgeon came to see Arlo again. The surgeon examined him and said ‘his tummy looks smaller than yesterday but bigger than Monday’ so at least they agree! He explained that he was disappointed the stoma hadn’t started working yet and that he’d hoped it would be working by now. He said he didn’t think it was more infection, which would be the worse case scenario, but rather a ‘mechanical’ issue either from a narrowing of the bowel or a ‘kink’ causing a blockage or it could be inflammation and his gut still recovering and not really starting to work again yet. He said if things don’t start working soon or the crp rises/he becomes clinically unstable again then he’ll need to go back to BCH so they can open him up again and see what’s going on.

When we went to bed Wednesday night he was very settled. I held his hand and stroked his little forehead for a while and he seemed perfectly happy. Morphine had come down a bit, rate on the ventilator was 35! Oxygen was 40. Unfortunately though at about 4am he went off on one again. Desaturating and thrashing about. His morphine had to go back up and his oxygen went up to 80. Rate had to go back up this morning to 55.

Yesterday morning there was a very small amount of air in the bag but not really enough. At one point around midday he was very unsettled, crying and thrashing around. I’ve never seen him like that before. It was awful to see and not really be able to do anything to help him. The surgical nurse came and did another washout but nothing came out this time. So the surgeon decided he wants him back over at Children’s so we can try and work out what the problem is.

This morning he’ll hopefully have another tummy scan so they can get a really good look at what’s going on and then we’re just waiting on a bed in PICU and for the transport team to come. Could be this morning, could be tonight, could be tomorrow. In the meantime I’ll be hoping with everything I’ve got that the stoma just suddenly starts working on its own. Unlikely but I’ve seen this boy turn logic on its head and defy the odds many times before, there’s always hope…

Oh and here’s Arlo doing his impression of Salt Bae(bee) 😂
(That’s a cannula in his scalp there, poor little thing is running out of spare veins 😞)

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