Day 59

10/2/17 – Day 59

Look who’s finally awake!

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8 weeks (and 2 days) old, 33+3 corrected. Now in hospital number 4…! Arlo likes to travel!

I’ve been trying to write an update for days. So much has happened though, it’s too much to process and I don’t think I’m ready to fully relive it yet. We’ve found being on PICU emotionally exhausting, far more so than NICU. Being surrounded by desperately ill children, some of them the same ages as our older boys, and then realising the reason you’re there is because your own child is also critically ill is horrifying. Your whole body is on red alert at all times, it’s just constant adrenaline and anxiety. Thankfully Arlo was looked after by some truly amazing people who just took such brilliant care of him (and us!) and they saved me from going totally mad with worry!

So in a nutshell (big nutshell), Arlo had his surgery on Monday. He’d grumbled on for a few days with suspected NEC but nothing definitive enough to warrant surgery until the night before when there was a change on the X-ray that looked like air in the walls of one of the big loops in his small intestine. His platelet count had also started to drop and lactate was slightly higher. The surgeons came and went over the consent forms with us. They were pretty terrifying. Obviously because of Arlo’s size (2lb-ish without all of the fluid) and how poorly he was there was a risk he wouldn’t survive surgery. There was also a risk they’d open him up and discover the damage was too far gone, in which case they’d close him up and bring him back with nothing possible to be done further to help.

He went down at 11:30am. Before this he’d had a central line placed behind his ear into his jugular and was given some platelets and more rocuronium to keep him still. The anaesthetists came and he was bagged for the walk from his bed space to theatre. We went as far as the lift with him and then gave him a kiss goodbye and managed to wait until the doors just about closed before we broke our hearts crying.

We were told to expect the operation to last around 4 hours, but obviously they wouldn’t know for sure until they opened him up. I don’t know how we got through the next few hours. We went to the Disney Store and bought The Good Dinosaur on DVD for Reuben & Rowan. Then decided to go and get a coffee near to the hospital but as soon as we got near my phone rang and they said he was back, less than 2 hours after he’d gone down. I immediately thought the worst, it was so quick, too quick. Luckily as we ran back to PICU we bumped into the anaesthetist in the corridor and he said ‘he’s okay’. Best 2 words ever!

The surgeons were there waiting to speak to us when we got to Arlo. They told us he does have Necrotising Entercolitis and his bowel had perforated allowing poo to leak out which was why he’d been so poorly but luckily for him it had happened right at the top of his bowel and his body had contained it fairly well. They’d removed 15cm of dead tissue from his small intestine and made him a stoma on he right hand side and a mucous fistula on the left. They said the position of the tissue meant he had a good amount left for reconstruction at a later date.

He was surprisingly stable straight after the surgery, his ventilation requirements came down a little and he just slept. The next day was a bit busier. The stoma nurse came and gave us his stoma kit. She also put his first bag on and covered his fistula with gelonet gauze. Arlo’s arterial line had collapsed during surgery so tissue viability came to look at that. He had a brain scan to check on the bleed he already had and check there were no new ones. Then he needed scans of his arm where the arterial line had been, one on his foot where another line had caused swelling and lastly an echocardiogram.

The day before the surgery I said to Sammy I thought something had changed with his stats. His heart rate was a little higher and blood pressure a bit different. And that I’d seen them look like that before, when he had his pda. I mentioned it to his Dr who said actually he could hear a definite murmur so it was no real surprise when the echo showed his duct had reopened. We were told this could happen through illness. He is still very swollen with excess fluid and the echo also showed a lot of fluid round his heart so it’s possible it could reclose on its own once he gets a bit better but for now the Drs are just going to keep an eye on it. If it doesn’t close on its own, and he becomes symptomatic again (hard to tell at the moment as he’s still ventilated and full of fluid) he may need pda ligation surgery but fingers crossed that won’t be necessary.

We were told fairly quickly after his surgery that he’d be going to Birmingham Women’s Hospital NICU as soon as a bed became available. So yesterday we arrived at hospital number 4. The reason for this is while he still requires ‘intensive care’ for his surgical needs, and still needs to be seen by the surgical team daily, he’s still a 25 weeker neonate so NICU is far more suitable for him than PICU. He’ll remain under the care of BCH surgical team and they’ll visit him here daily for the foreseeable though.

Today he seems to have settled in. His ventilation requirements have come right down. Yesterday he wasn’t really taking any breaths for himself. Today he’s taking lots. Oxygen is right down and the rate has been turned down to 35 and he’s coping fine with that. He was actually awake this morning!! First time in about 8 days we’ve seen him properly wake up. His crp hasn’t really changed today but apparently it’s relatively normal for it to plateau a bit and his platelets have dropped a little more. I’m not going to pretend I’m not worried because I am but just have to focus on the good things as much as possible and wait for that elusive first poo!

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