Rory's First Month

Disclaimer One: I should start this and every post with a disclaimer that any of the medical facts I discuss are mine and Pete's interpretation of what we've been told by doctors and nurses. They may not necessarily be 100% accurate as we have been overwhelmed with information, but they are our best attempts at understanding the extensive details of Rory's illness and recovery.

Disclaimer Two: This post contains some upsetting photos that up to now we haven't shared. Please be prepared to see some graphic images of Rory's leg injury and of him on ICU. 

Rory's Story. The beginning. 

The first nineteen days of Rory's life were wonderful. After an eventful but not overly traumatic birth we brought him home from hospital a couple of days later and, in the midst of the Covid quarantine, enjoyed daily life as a family of three in our cosy bubble. Rory met a handful of close friends and family through the window as per quarantine guidelines, and on a couple of occasions made it to the beach (we live ten minutes away) for evening walks along the sea front. 

Day nineteen, a Friday, was particularly warm , which is why when he struggled to settle that evening and felt warm to touch, we were not overly worried. A couple of hours ticked by however and he continued to cry, and his temperature sustained. By 10pm we decided to phone 111, and an hour later Pete was sat with him in A&E whilst I waited in the car (one-parent rule thanks to Covid). 

For the rest of the story I'll try and skip through to the important parts, otherwise I could write pages and pages about the many events, decisions and emotions that followed from then to the present day. 

Rory was kept in hospital overnight with a suspected urine infection, and I stayed with him. At 6am on the Saturday however I was advised to call Pete, and told that transport was on its way to take Rory to Sheffield Children's Hospital; one of the best children's hospitals in the country. They were much better equipped to deal with Rory who had taken a terrible turn for the worse. The transport team arrived late morning, but it was several hours before they could stabilise Rory enough to get him into the ambulance; he really wasn't doing well and it was clear that this was rapidly becoming much more than a urine infection. Information coming from the medical staff was sparse and we didn't really know what was going on, but we weren't prepared for the visual impact of seeing him hooked up to so many wires, as well as the ventilator which was now breathing for him. It was only then that the severity of his condition dawned on us. We later learned that the infection had spread to his blood and his brain. He'd gone into septic shock. 

We followed the ambulance to Sheffield, went straight to Intensive Care and were kept in a separate room, dubbed by some of the long-stay parents we later made friends with as the "bad news room". We could have been there twenty minutes, or it could have been hours. It was all a horrible blur as we waited to be allowed to see him. One thing I do remember is a doctor coming to speak to us, and me begging her to save his life. All I wanted was somebody - a doctor, a nurse, even the housekeeper would have done, to tell me he was going to be ok. That was all I needed to hear. But nobody dared to make that promise to us; a fact that I was painfully conscious of. I can still hear myself repeating the words "I can't lose him" over and over until my tears eventually made it impossible to talk.

The night was long, but by some absolute miracle he remained stable. The next morning he turned three weeks old, and somebody (I can't recall if it was a doctor or a nurse) admitted to us that they hadn't expected him to make it through the night. I was glad that they hadn't been that honest with us the day before. He was still too poorly to be moved, so the closest I could get to him was to hold his hand. I squeezed it so tightly. My baby boy was alive. 

Scans over the coming days found a blockage in his ureter (the tube between his kidney and his bladder), and a three week build up of debris had caused an infection of e-coli, which had developed into sepsis and meningitis (infection around the brain). At least now we knew the cause of the infection. The antibiotics he was on would keep any new infection at bay until they'd be able to take action to clear the blockage.

A significant part of the story over that weekend was that in part of the efforts to save him, he'd needed an IO line inserting into his right leg. To non-medical readers this was essentially a super-canular that goes deeper, into the bone as opposed to a vein, in order to get the drugs into his system quicker. Unfortunately at some point on that Saturday the IO line had leaked, known as an Extravasation. The fluid has escaped the line and had flooded his leg, causing immediate damage to the skin. There was a risk of this damage extending through his skin to his tissue, muscle and possibly even bone. The extent of the damage was as yet unknown. 

On day one, the extravasation looked like this:

The best case scenario was that the discolouration would heal itself completely. We expected that as a worst case scenario, Rory may be left with the purple markings down his leg permanently. But at that point it didn't matter; he was still with us and 24 hours ago that fact could have gone either way. 

Over the next few days Rory continued to improve, much to the delight of his doctors, nurses, us of course, and our family and friends back home who were anxiously awaiting our daily updates of his condition. He started to open his eyes - something that I'd been afraid I'd never see again. Every little step forwards filled us with such an overwhelming sense of relief and joy. 

Just under a week after he was admitted he was well enough to be brought off his ventilator, which was fantastic. Him being able to breathe on his own was a huge step, and also visually made him look a lot less 'poorly', which was very reassuring to see. He was still on a permanent drip of morphine but was well enough to move down a step from ICU to NSU (Neo Surgical Unit) - still classed as critical care but did not need a nurse by his bedside permanently. More importantly - we were able to hold him.

He stayed on NSU for another couple of weeks. We had a room in the hospital's residential block although I spent all of my time by his bedside, and went to him during the night for feeds as I was still breastfeeding. Due to Covid Pete couldn't come on to the ward, although was allowed the occasional two-hour visit. We are very fortunate that Pete works remotely so was able to stay in Sheffield with us, working from our room rather than having to return to Grimsby.  

Whilst on NSU he was visited regularly by the Plastics Team and the Physio Team who were in charge of his care from the point of view of the Extravasation injury. More on that story in the next post. 

Just under a month later Rory had finished his course of antibiotics and was completely clear of all infection. The day we were allowed home was momentous. I had barely been outside (except for the odd walk to the nearby park) since he was first admitted, and to be able to take Rory out into the fresh air was an incredible moment. Driving home on the motorway was surreal- bringing back memories of driving in the other direction, following the ambulance. When we arrived home I wanted to simultaneously collapse in my own bed, have a bath, cuddle Rory close and stick Netflix on-something to completely take my mind off the last month. By the end of the first day I'd done all of the above. Thank god. We were home. All three of us. 

Ureterostomy

Although we'd been discharged we were still back in Sheffield twice a week for dressing changes on his leg, as well as to deal with the root cause of the infection in the first place, to ensure that this didn't happen again. The blockage in his ureter was confirmed, and after several x-rays, ultrasounds and other scans it was decided that he would undergo a temporary ureterostomy. With him being 8 weeks old he was too little for a procedure to 'bypass' the blockage, so instead the ureter was brought to the surface of his skin as a little stoma. It's an incredibly neat little hole, and managed by just having an extra nappy wrapped around his waist to collect the steady dripping of urine from that kidney. In 12-18 months' time, when he's bigger, he'll undergo another operation for the tube to be fed back in to his bladder, this time feeding in through the muscle wall of the bladder. By that point he'll just be left with a tiny scar on his waist. We have been 'living with' his stoma for over a month now and it's become incredibly easy to look after. The second nappy is not visible under clothes, and it's just a case of changing an extra nappy every now and again. The bonus is that those horrible explosive poos that creep their way up the back of vests are now caught by another line of defence!

Rory dealt with the surgery of his ureterostomy so well; much better than us. He came out of theatre very sleepy and very hungry, but within hours was back to his normal self and we actually had one of his first big smiles. Our baby boy was happy. It was like a dream. 

Thank you NHS

We will forever be indebted to those absolutely incredible doctors and nurses at Sheffield who saved our baby boy's life. Whatever comes next in terms of his ureter and his leg, nothing can take away from that fact. This summer we watched the nation open their front doors on a Thursday evening and spend two minutes clapping for the NHS. How our eyes were opened to how incredibly lucky we are as a family, and as a country, to have this care freely available.