As an alternative to my usual stories and photos of happiness I’m going to tell a sad story today. The story of what happened to my lovely little Immie on her 3rd birthday (and the week following it). The experience has been going round and round in my mind since we left hospital and I thought that writing about it may serve as some kind of therapy for me to get it off my chest, and not only that, it may help anyone else out there who may go through a similar experience.
Her birthday started as it should with balloons and presents, wearing her lovely new dress, eagerly awaiting her party that afternoon, until everything came crashing down at about 11am when she fell over and bit through her tongue when her chin landed on a piece of furniture.
We used an ice lolly at first to try and stop the swelling and bleeding, which worked for a bit, but then n hour or so later it started swelling and bleeding again, pretty profusely, so the nurse on 111 sent us to A and E at the John Radcliffe Hospital. The doctor’s did not think she would need any intervention as tongues heal very well and quickly by themselves (apparently they’ll only stitch it if the cut in lateral down the tongue rather than across it), however by 7pm that evening Immie was refusing to eat or drink anything so we were admitted for the night as they were worried about dehydration, and wanted to put her on a drip. The blood was still pouring from her mouth 12 hours after it happened, which was traumatic enough for her in itself, but they now had to attempt to put a cannula in her 5 times before it was successful in order to give her the IV fluids she needed to keep her hydrated.
The next morning I was full of hope that she would start to eat and drink, but she refused again all day. We spent the day coaxing her with drinks, yoghurts, sweets, milkshakes, ice creams and jellies. But by this point her tongue was so swollen, black and covered in blood clots that I’m not surprised she didn’t want to use it. She was also refusing to talk and even swallow saliva, so we had to manage that by wiping her mouth continuously. That night we were admitted to the children’s hospital.
Meanwhile back at home, thankfully my sister and her partner were staying with us that weekend so were able to look after the children while we were in hospital. They brought her brothers and cousins in to see her on Monday morning as I thought that may perk her up. It did momentarily, and they had a run around in the play area, but she soon found she was too weak to do anything else but lie down in the buggy or the bed and watch the tablet. Still no eating, drinking, talking or swallowing.
The next day was Tuesday and was probably one of the hardest. She woke up just utterly drained and weak. She hadn’t eaten anything since Saturday and it was all she could do to just sit in the buggy as I walked her around the hospital lobby while she stared into space. The only time shed really communicate was to point at bottles of drink and food that we went past and I would have to buy them so that she could clutch them to her chest.
This day, not only did I feel I’d lost part of her as she wasn’t talking, I also watched her spirit get snuffed out as she was slowly starving and that was very hard to watch. At this point we agreed with the doctors that she really needed a nasal gastric tube to get some nutrition into her. I knew that the only way she would start swallowing was if she was happy, playing and distracted and this wasn’t going to happen if she was wasting away in bed. Very aware of the additional trauma this may put her through, and myself feeling very low, I left Lance to go with her for the NG tube fitting. Apparently it wasn’t as bad as we expected, (maybe she was too weak to put up a fight), and she was in and out in 5 minutes.
The following day was mostly the same. We were allowed to take her home on leave in the afternoon to see if home helped to perk her up a bit. She spent most of the two hours we had there laying on the sofa watching TV. At one point I took her upstairs to get her changed and to the toilet. She had so retreated inside herself by this point that she was pretty unrecognisable in her character. As I had been the one there to constantly wipe her mouth of the blood and saliva which pooled there (which she hated) she had come to look at even me with fear and distrust, which was almost unbearable. Just trying to get her changed was a battle as she was so scared of what I might do to her. She screamed and screamed and looked at me like a terrified wild animal as I tried to wrestle with her. Possibly one of the worst experiences of the week, strangely. I ended up managing to hold her to my chest as we both just sat there on the floor sobbing.
I came back to hospital feeling pretty desperate and exhausted with the home visit having made no difference. Luckily we were met by Kate, the clinical psychologist who wanted to meet and get to know Immie, so took me aside to talk to me about her. It was so therapeutic to sit and pour my heart out to her. She explained that Immie’s reaction was a typical child reaction to fear, and it was her way of protecting herself. So much was happening to her that she didn’t understand, and she had retreated inside herself to keep herself safe.
One of the things I found hardest was the fact that Immie no longer seemed to want me anymore. She didn’t want any affection, would scream at me if I asked her anything and really saw me as one of the ‘bad guys’. Kate explained that she certainly did want me there and that all I needed to do was to act positive and not seem to worried about what was happening, but most importantly just be there. Immie would be feeling terrified and seeing Lance and I stressed, worried and upset would only increase that fear. Easier said than done I know, but I resolved to try and be as happy and positive as I could from then on. She also advised to relieve any pressure on Immie to eat or drink. This would come in its own time when she was ready, and putting any kind of pressure on her would be making it a whole lot worse rather than better.
That evening I sat with Immie and opened a milkshake up for her to smell. She was fascinated by it so I decided to get a tray and to tip it out in there for her to play with. What happened next was the first breakthrough I’d been praying for, that would start her playing and interacting with me again. We started picking up any food we could find around her bed space and to pour it and mix it into this tray. She must have done this for over an hour. She then leapt out of bed and started to play with the water at the sink – pouring it from bottle to cup and back and forth. It was like being able to hold and play with the food and water was another way of being closer to it that didn’t involve having to put it in her mouth! That night I finally went to bed happy and could see a glimmer of light at the end of the tunnel…
She awoke the next day a new woman! Two days and nights on the NG feed was obviously starting to take effect and she leapt out of bed ready to play with everything that had been given to her during her stay.
We had an appointment with Kate that morning so went down the cafe in the lobby for Immie to do some food play with her. Immie had lots of fun making marshmallow men out of candy sticks and marshmallows, then they had competitions to see who could stick the marshmallows on their faces. This was all with the aim of gently encouraging closeness to food and drink. Also to marshmallows on her face was a good way of her getting used to things near her mouth again.
After this, we went back up towards the ward. We stopped at a balcony area outside the lifts and for the first time in 3 days we watched Immie running around, laughing and smiling with her little brother. I sat on the floor and cried as I watched…
We still weren’t over the mountain however, as she still wasn’t eating, drinking, swallowing or talking. I was still having to manually empty her mouth of her saliva, which really upset her, and was making her chin very sore with all the wiping. She was still clutching food and drinks, and then took to offering me the drinks whenever she was thirsty.
Having a child who won’t swallow (but CAN swallow) was extremely frustrating. By this point her tongue was looking much better, no longer swollen, just bruised, and she could probably swallow if she wanted to, it was just the psychological fear of using a part of her body again that had caused her pain that was holding her back. The consultant told us that this isn’t unusual in children, though more often found with limbs than tongues!
We were doing a lot of play with the play therapists on the ward, who were fantastic, but we soon reached Friday, 6 days after it happened and were still in the same place no eating, drinking, swallowing or talking. On Friday afternoon, after a busy day of playing with her best friend and cousin who visited I was feeling in despair that we still hadn’t made any more progress. I ended up taking her to the balcony area here we could watch the traffic going past, when she started saying single words to name the colours of cars. Gradually she started saying more and more, and as she did, it was like she unknowingly was able to move the saliva around as she spoke, rather than pooling it at the front of her mouth as she had been. Then she swallowed!!! I told her she’d swallowed and she leapt out of the buggy, grabbed her spoon and pasta (that i’d made her earlier and she’d been clutching to her chest) and started eating it! I sat on the floor next to her and cried my eyes out. The joy and relief that I felt at the moment I can only describe as similar to the moment that they hand you your baby after labour.
She then jumped up and said “Mummy! let’s go to the café!”. Luckily Pret was still open so we flew down and she devoured a banana, a gingerbread man and a cup of milk. We then went back to the ward and she spent the rest of the evening (until about 10.30pm) chatting non stop, and eating anything she could find.
The boys and Daddy came in the next day as soon as they could and we spent a happy morning buying any snacks and ice cream she wanted, playing and waiting for the NG to be removed so we could be discharged.
The whole experience taught me a lot of things. One of the stand out lessons is how resilient children are. It is so easy in those dark hopeless moments to imagine all the worst case scenarios – her tongue will get infected, she’ll get sepsis and die; she’ll never talk again because she’ll be so traumatised; she’ll be on an NG tube for at least a year; she’ll never sleep soundly again… However, we’ve come home and it’s like NOTHING ever happened. She has bounced back 100% and has even had that bit more joy in herself and spring in her step! Also that when you are feeling utterly hopeless that you can’t fix whatever the problem is, just being there for your child is all they really want and need. Playing with them, acting normally and trying to reduce the stress they are feeling is what they need more than anything to help them recover.
Being surrounded by so many other children in the hospital with problems far greater than ours was humbling and helped to give me reality checks when I needed them. Really, deep down, I knew Immie would be fine. I knew she would be home in a few days, that she would eat, drink talk again. Sat next to parents whose children had brain tumours, hydrocephalus, congenital disorders, our problems seemed so very little. After a few days I realised that a lot of the frustration I was feeling about still being in hospital was due to selfish reasons, that this is inconveniencing ME, that MY bank holiday weekend has been ruined, I don’t want to sleep here another night. Once I put those feelings aside, and really focussed on Immie and her need for me to be patient and let her recover in her own time, I found I could accept the situation much more easily.
Anyway, we are home now, life has resumed its gloriously normal monotony. We have just redone her birthday party (which she seemingly hadn’t even missed!) and this episode is one for the family history books.