Reflux surgery - a question of timing

It's almost a month since I wrote to say that Adam looked like he needed surgery to stop him refluxing milk into his lungs, so that his lungs could recover. Sorry to take so long, but it's been another rollercoaster of a month.  The surgeon from Great Ormond St agreed that this op (called Nissen's fundoplication) needed doing and that it should be done within a fortnight.  Great!  Our baby was about to get that important step forward out of the vicious cycle stopping him from recovering.  The next week, however, the surgeon reported that his next available slot was in April. I was devastated.  How could we wait so long until we'd have any hope Adam would start getting better? All the while, the milk he was aspirating into his lungs was making him prone to pneumonia, risking a major step backwards.  I normally manage to hold myself together pretty well in the Neonatal Unit, but spent the next few hours repeatedly dissolving into tears, holding Adam to me and weeping into his fuzzy little head.  (That sounds rather histrionic, but I did it quite discreetly, and would have just felt I'd recovered when another kindly nurse would ask how he was doing, and start me off again.)  I don't know whether it was because I was upset, because of his clinical need or, I expect, a bit of both, but the consultant at UCLH phoned Great Ormond St Hospital (GOSH), words were had, and by the afternoon GOSH had squeezed Adam onto a surgical list that Friday afternoon!  Hurrah!  That lunchtime, he was all ready to go, having had two cannulae inserted and having been moved onto the breathing apparatus that can be used in the ambulance.  Then word came that they had needed his cot in the Neonatal Intensive Care Unit at GOSH for an emergency, so they had to cancel his surgery slot.  The rollercoaster continued - we were back to square one.

A frustrating fortnight followed, where we waited for cot space at GOSH and Adam's oxygen requirements slowly slipped upwards (to 45%).  I did a marvellous job hassling UCLH and UCLH did a marvellous job hassling GOSH until a cot space opened up two weeks ago.  We were finally transferred two weeks ago this Friday and Adam was placed on the emergency surgery list.  Despite being first on the list for surgery at the start of each day, he wasn't in a life-threatening condition, so kept being bumped down the list as real emergencies occurred.  This was totally understandable, though I felt that there could have been better communication between the surgical teams and the NICU; when they had decided to operate on someone else they could have let NICU know, so we didn't think they might be coming any moment, for about 4 hours, and maybe Adam wouldn't have spent so long nil by mouth, only to be eventually postponed for another day.  It was getting to the point where they were talking about sending us back to UCLH until a space could be found on an elective list (in April?!) and I was considering how I would chain myself and Adam to the walls to stop them being able to move us, when finally, a week ago last Monday, they decided today was the day, Adam was sedated, intubated (had a tube inserted down his throat and was artificially ventilated) and he was ready to go.  Then the surgeons checked his blood tests from two days before and discovered that his blood wasn't clotting properly.  The blood test needed redoing to check whether he'd need clotting products, and would take an hour or so.  I was furious, as they'd had two days to check the results, and now it looked like he could miss his slot again.  I had visions of having to go back to UCLH, after all this, with no operation, and having to go through it all again.  Luckily, the fact that Adam had already been intubated meant that they were much less likely to simply bump him off the list for that day, so belatedly he was taken down to surgery.  I went out for a walk and a coffee, feeling rather more emotionally fragile after the extra wait, and suddenly feeling unsure that cutting my baby's tummy open was really something I wanted to happen.

It went very smoothly.  They managed to do it laprascopically (keyhole) rather than opening him up with a big cut, and it took less time than they thought it might.  After he came out of surgery, they kept him sedated and ventilated for another day before extubating him off the ventilator early on Wednesday, at which point they were ready to send him back to UCLH, except now UCLH had no space.  We were eventually transferred back on Tuesday, but this time the waiting was not stressful at all.  Adam could recover just as well at GOSH as UCLH.  With adequate pain relief he has been fine.  He has four little cuts in his tummy, like the four points of a compass, and, from the middle, a tube coming out of his stomach (a gastrostomy).   This is what he'll be fed through until he can establish full oral feeds.  After another day, his tummy and gut seemed to be working properly, but the hole in his tummy holding the tube is still leaking a bit, and has made the hole in his skin rather raw.  This will heal over the next few weeks, after which they'll put a smaller tube in, which will be easier to manage.  Until it heals a bit more, he is being fed continuously, rather than in larger amounts every couple of hours, to reduce leakage of the feed out of the stomach.  He can still have a go at breast feeding though, while this is happening, which he is doing with varying success, possibly depending on how hungry he is at the time.  So, now we're just waiting to see if the surgery will enable his lungs to recover.  He's already on slightly less oxygen (35%) and a slightly lower flow rate (6 l/min), which is promising, but we now need to see if these numbers keep moving in the right direction.  In the meantime, he is still mostly just getting on with being a baby, 8 weeks corrected age today, weighing 2.8 kg (6 lb 3oz).  He has learnt that he likes being cuddled, being upright and looking at stuff, (including me, hurrah!), and doesn't like being ignored and lying in a cot.  He is a little less keen on the dummy as a soothing device and more keen on being jiggled.  So the next big question is whether any of those lovely smiles he has just started doing are real, and how many are just wind?!

Ready to go to GOSH - the first time.

Recovering from surgery, with gastrostomy tube in full view.

Much more awake, but still a bit on the puffy side.

Socialising with Mummy, in my lovely new baby gro (thank you LR - black and white stripes were much appreciated!).

Monkey!!