Ten days after Riley’s birthday I took her to the hospital. I assumed that they would tell me it was just teething and I would head back home again. The few days before had been hell. If she was awake she was either crying or screaming. I mistook it for teething initally because teething has always knocked her around and she’s often been that upset with teething before. She was drooling like a tap, drinking copious amounts of water and generally out of sorts. I was beginning to get concerned though because the teething episodes had never lasted this long.
My sister came over on a Tuesday and seeing how badly Riley was doing she offered to take us to the hospital. I am ashamed to admit that initially I refused because it got my back up. But when, about half an hour later, I put Riley in the bath and she was still crying I noticed two things. Firstly, she’d begun to lose her voice. And secondly she was crying in the bath. Both of those things scared me. I silently apologised to my sister and asked her to take us to the hospital. As we were driving to the hospital, which luckily was only 15 minutes away, I began to think that there was something really wrong because she had always been a jolly baby and a good patient when sick and this seemed out of character.
I got called in to see the triage nurse very quickly – the hospital always looks at babies immediately and gives them the once over before deciding how to proceed. The nurse asked me a couple of questions but I can’t really remember what they were. It was something to do with her symptoms and what the trigger was for me to bring her in. The nurse asked me to go wait on one of the beds for the doctor. And within 5 minutes, ten doctors had swarmed around us. We were in trouble. Really big trouble.
Riley was basically asleep on my chest at this point – she was so exhausted. They asked me to lie her on her back and when I did they could see that she began to struggle for air. So back she went onto my chest. It was then that they told me that the reason she’d been drooling like a tap was because she was having difficulty swallowing. Which was surprising to me because she had been drinking water and milk with no problems – but in hindsight she had been spluttering with the bottle from time to time. The various doctors debated what to do. They didn’t want to force her to open her mouth to look at her throat because that kind of trauma can cause the throat to seize up and she wouldn’t be able to breathe. I attempted not to react to this news. I was acutely aware of Riley on my chest and that for now at least she was calm. I just kept saying to myself that I needed to stay calm so she could be as relaxed as possible.
Eventually they decided to take her into surgery so they could anesthetise her and look at the throat. If it was compromised they could then intubate her while she was unconscious. I was told that I would be wheeled in with her and would stay there until the anesthetic had taken hold and then I would have to leave until they were finished. I tried not to panic and called Mr Goog who was at work (and over an hour away). He vented a little bit but even in the moment I knew it was just because he was scared and far away.
As we were wheeled into surgery, the bright lights had woken Riley up a bit. She popped her head up from my chest and had a bit of a look around. Her big blue eyes taking in everything. The doctors had hoped that when we got into surgery they could just hold the mask near her and she would slowly go under. Not the case for my fiesty little one. And so I was left with no other option than to basically pin her to the spot while the anesthetist jammed the mask on her face. She screamed into the mask and I could see the tendons in her neck as she strained against it. She went under, they took her away and I didn’t get to kiss her goodbye. I thought to myself as I left that I didn’t know what I would do if the last time I ever saw her I was pinning her down while she screamed into a mask.
I waited in the waiting room and drank truly awful coffee. My sister was there and we started to organise some of the practicalities. If she was intubated we wold be going to a different hospital and I would need some stuff from home. We talked about what I would need. I borrowed some cigarettes from her for later, even though I’d given up smoking. In between calls from my mum and Mr Goog a nurse came to tell me that she was fine but had been intubated and I could go down and see her on the ward while we waited for transport to a hospital with an ICU.
It seemed to take forever for them to bring her back to the ward. And then there she was, tube down her throat and still stirring a little bit even though she was sedated. The doctor told me that it was a delicate balance to give her just enough sedation to keep her under but not too much. In the end they had to give her the maximum amount because she kept trying to sit up. This made me proud for some reason.
It was only then, when I was holding her hand, that they explained to me that they were pretty sure she had Epiglottitis caused by Haemophilus Influenzae Type B. Some of the younger doctors even seemed excited by this because since it had been added to the vaccine schedule 10 years ago, this was the only case they’d seen. Riley was immunised but for some reason it just wasn’t enough. Even though she had only had 2 out of the 3 doses, apparently that should have been enough to protect her.
An ambulance team arrived to take her to a hopsital with an ICU. They had to take blood before we left and I must have watched them try to find a vein for half an hour and go through about ten needles before they finally got what they needed. My sister had come back with some supplies and I hopped in the ambulance. I dozed a little on the trip (it was about an hour away) and by the time we got there Mr Goog was already there, waiting for us.
We got her settled into the ICU, which was a combined child and adult ICU so most of the other patients were adults. I decided to sleep over, but they asked us to leave briefly so they could change the throat tube to a nose tube that she would be more comfortable with.
When we came back, she did look more comfortable, but I just wished she wasn’t connected to so many tubes and cords so I could cuddle her and pick her up. She stayed sedated for the next two days. She was tenacious though, and fought the sedation every step of the way. She was constantly trying to sit up or roll over and kept the staff on their feet. It was a waiting game. They wanted to make sure she was responding to the antibiotics before they took the tubes out.
I’m glad I didn’t go home. I’m glad I didn’t have internet on my phone. I would have completely freaked myself out. I would not have wanted to know that HiB could also cause pneumonia, meningitis and brain swelling.
Every now and then the social worker would drop by and ask me if I wanted to make use of accommodation that was near the hospital. Every time I’d tell her that no, I wanted to stay in the hospital room. She’d make comments that in another day or so I might trust the staff enough to leave at night. I attempted not to scoff in her face. I did believe and still do that Riley sensed my presence and was calmer because of it.
Eventually, they decided that they could take the tubes out. But first she had to wake up. And for someone who had been fighting sedation for days, she sure took her time. They took her off sedation in the morning and it wasn’t until 5am the following morning that she was awake enough to have the tubes taken out. She’d drifted in and out the night before, and I’d felt ten times better when she’d opened her eyes, but she soon fell back to sleep again.
So finally, I was able to take her out of the bed and give her a cuddle. She was very hoarse and she whimpered alot and she refused to let anyone touch her except me. It was at this point that the infectious disease doctors began to suggest that it wasn’t HiB, but that perhaps she had some kind of immune problem. I kept repeating that she’d always been really healthy but they couldn’t quite wrap their head around the idea that she was immunised and still got Epiglottitis. I agreed to do follow up tests, but more to placate them than anything else.
When she was breathing on her own, they moved us down to the kids ward. She was still on a drip and so it was impossible to get her to have any decent sleep because she woke herself up every time the tubes moved. There was a pull out bed that I was sleeping on and despite being told that they ‘didn’t recommend co-sleeping, but it was ok if she couldn’t sleep’ I moved everything around so she could sleep with me. She got a great night sleep. I on the other hand found it hard, because I was too concerned about rolling on to her drip.
I was so relieved when we got to go home. It was hard to see her that weak. When we got home she didn’t even have the strength to crawl – let alone walk. But slowly as she got more milk and more food she got her strength back. She was pretty much attached to me 24/7 which, after everything we’d been through I didn’t mind one bit. I only started to relax again after we’d been home for a few days and she had her first smile and giggle and I could see she was getting back to herself again.
Even now I’m hyper-sensitive when she has a cough or anything throat related. A couple of months after the ICU she lost her voice again and I took her to the hospital – they said it was just an infection and nothing to worry about – so I took her to hospital again the next day. This time they decided to give her some steroids. And even though it seemed like Epiglottitis all over again, it wasn’t.
Through the whole experience I didn’t think too far ahead. I put one foot in front of the other because I knew I needed to function and that I couldn’t think about all the what ifs that would drive anyone crazy. So I stayed calm and focused on what was happening that second and I never went any further than that. I didn’t cry. Not even when we came home – at that stage I was just so grateful that we survived and I was too busy cuddling to cry.