I’ll never forget the first time it happened. I’d just finished changing Ellie’s nappy and she was happily sat on her mat playing with some toys. I left the room for a second to put it the nappy in the bin and wash my hands, but when I came back I was shocked at what greeted me. I’ve had 2 children with severe reflux, but I have never seen as much sick as I did then! Ellie was soaked to the skin, I literally could wring her clothes out. The sick was running off the mat and onto the floor, it was like her little body had expelled everything that was in her stomach. Little did I know at that point, that was exactly what had happened. She was happily sat there splashing about in it without a care in the world, so assuming she had some sort of bug I stripped her off and carried her upstairs where I ran a bath. I didn’t have time for this really, I had dinner to make for the other 3 children and my mind was racing about the million and one things I needed to do. Her bath lasted less than 5 minutes and as I lifted her out, something felt wrong.
I wrapped her in a towel and as I did she went floppy. Stupidly I thought she might have fallen asleep, that much sick must mean she had a bug or something. I threw a nappy on and cuddled her in, but it didn’t feel right. I took her downstairs, called Adam who was in the office working and we decided to call NHS Direct and ask for some advice, the phone lines were really busy and I was on the phone for 15 minutes before I got through to a call handler. During this time I’d tried to wake her up with no luck and I knew in my gut something was really wrong. I explained about the sick and the sleepiness to the person on the other end of the phone and she asked me to again try and wake her up. I spent the next 5 minutes calling, singing and gently shaking my baby to try and get a response. But there was nothing. I could barely breathe and I have no idea what the lady was saying on the end of the phone and before I really knew what was happening a paramedic walked though the door. I handed Ellie to Adam so he could take her to the ambulance (they didn’t want to hang around and wanted to get her to the hospital ASAP) and I ran upstairs in a panic to throw together a bag to take to the hospital. In that moment all I was thinking of was her, she’d need nappies, wet wipes, a couple of changes of clothes and some toys to keep her entertained, then I was in the back of an ambulance on the way to our local children’s A&E.
It was one of the scariest moments of my life (matched only by the ambulance trip I took from our local hospital to a special children’s hospital with Callie when they thought she had meningitis). At that point I knew very little about epilepsy and the different types of seizures. I knew nothing of NHS waiting lists for EEG’s or the best places to eat in the Royal Gwent Hospital. 8 months on I consider myself a little bit of an expert! It was a terrifying time and I’m very happy to say we haven’t had an unexpected hospital trip in 4 months.
That hospital stay was really difficult, but not for reasons you might think! Ellie again threw up rivers of sick, this time it was all over me, I was soaked to my skin. In my panic I’d been so focused on my baby girl, I hadn’t picked up any toiletries or a change of clothes for me! It was only by pure luck that I’d used the changing bag and so I had a power pack for my phone. With 3 other children to look after and by now it was approaching 11pm, I needed Adam to stay home, so I had to spend the night in sick soaked clothes. The next day, when we’d managed to sort emergency childcare, Adam came into the hospital with supplies, except he bought clothes that were 2 sizes too small.
In the 6 months that followed I spent an equivalent of 2 months in Hospital with Ellie, sometimes going in by ambulance, other times driving her in myself. After the 2nd emergency visit, again with no clothes, toiletries, and this time not even a charger for my phone, so no way of contacting Adam, I packed a hospital bag and set up a google doc. I’m a very organised person and I like to be prepared, I believe if you’re prepared you can literally face anything head on. So now, every time I take Ellie to hospital to be checked over, or phone an ambulance, I grab my emergency bag. There have been times I haven’t needed it, but its always best to be prepared.
In my bag I keep underwear, a pair of joggers, a couple of t-shirts, a travel toothbrush and tooth paste, a micro-fibre towel, a travel shampoo, dry shampoo, deodorant, conditioner and body-wash, a sponge, Vaseline and moisturiser (hospitals can be really dry places) and a power bank, phone charger cable and plug. These are my essentials, and then on my google doc that’s shared with Adam, I add things I need as I think of them and every day before he leaves to come and see me he will check the list and then phone to make sure there isn’t anything else. I’ve found that 2am is when I think of things I need the most, like a water bottle some snacks and some thick socks. 2am is not the time for phoning Adam to ask him to bring these things as he keeps his phone on loud just in case there’s an emergency, so texting or emailing is out of the question too. However at 9am, when he phones, my head is whirring with the thoughts of all the tests that have been done, the worry of what they might show and the worry of what they will show. I’m thinking about the ward rounds and all the questions I need to ask, I’m not thinking about what I need for my own comfort!
Having a child in hospital, whether its an emergency visit or a ‘routine’ stay is a stressful experience, the most important thing to remember is to take time to look after yourself, eat chocolate, drink a hot drink and chat to the other parents who are around in the parents room or in the playroom. They know how awful this experience can be too. Don’t let yourself get burnt out, then you are in no position to advocate for your child.