Next Steps for our SWAN

As readers of my social media pages may have seen we were called up to GOSH Thursday and we weren’t really sure why.

We knew it wouldn’t be for a diagnosis as all the tests had come back negative and there’s no way the 100k Genome project would have an answer within 2 weeks of going on it.

We went up apprehensively, but for the first time I wasn’t too anxious as I knew we weren’t going to hear ‘bad’ news.

We sat there and saw new specialists and a lovely registrar from a different country’s top children’s hospital. We recounted the new symptoms, we were asked different questions about situations that haven’t really been asked before. We told as much as we can about our BBG.

They then went out and the consultant came and delivered our course of action.

BBGs course of action

  1. Feeding Tube

Our consultant wants BBG to have a feeding tube. This is mainly because she has gained less then a pound in 4/5 months. It is also because BBGs still predominately on breast milk, purees and the odd dissolvable crisp and digestive biscuit.

I’m not going to lie, I am happy she is going to be on a feeding tube. Don’t get me wrong, I didn’t have BBG and go ‘I want her to be fed by tube’ that is not what I’m saying at all! Let me explain.

Knowing your baby isn’t eating what she is meant to, knowing your milk is pretty much the only decent nutrients she is having is worrying. Knowing that to grow and get big and strong you need nutrients that she isn’t getting, is worrying.

This is not the course of action I wanted at all. I want my baby to be eating normally, I want my baby to be able to feed her self. I want my baby to be growing and putting on weight. We have tried feeding her but now we know she needs medical help.

So we are awaiting a dietician appointment to discuss everything. I am secretly hoping for a miracle and that they say, ‘o no she’s fine, she doesn’t need one’ but we know this is the consultants aim and so we will work with them.

2. EMG regularly

As previously mentioned in various blogs, we have had a few EMGs.

EMGs are special needles put into the muscle. An electrical pulse is then sent through the needle and the muscle responds giving a reading.

All the EMGs have shown that there is a problem. Each EMG has shown an unknown myopathy pattern show up.

They now want to redo the EMG to monitor the deterioration of the muscles. To be honest, I don’t really know how it all works, but if it is to help my girl, and help the doctors then it is a test I need to do.

We have been told that they also want to do an EMG on her tongue. The normal EMG in her foot and leg is horrible enough to watch.

Her first EMG also had a result which meant a second one was needed between her eye and temple, as a parent this is extremely hard to watch as although it doesn’t ‘hurt’ your baby is screaming, so goodness knows how she will react with an EMG on her tongue!

3. Lumbar Puncture

Due to BBG needing to be put under a general anaesthetic for her MRI as it was deemed to dangerous for her to be put under sedation, this will probably be the case for when she has a lumbar puncture.

These results will be quite interesting as it will show us detailed results in relation to her brain and how it is working, it shows different things to blood tests so hopefully these may come back with some sort of an answer.

So for now, still no diagnosis, still worrying about the sudden loss of momentary movement and still stumped by my girl.

BBG constantly has a bruise where her body gives up on her. Friday her body gave up and she cut her lip. Thankfully she was still so happy as she always is.

We are still holding out hope, hope for an answer, hope that the doctors fears are wrong and hope that our daughter will go onto to have a fulfilling and happy life.

All these painful tests, all the intervention is awful to watch, awful to have to sign to say it can happen. At the end of the day we have weighed everything up and decided this is what needs to happen.

At the end of the day I’m just A Mum Doing Her Best

We found a toddler seat in the consultants room, we managed to quickly put her on it before she lost her balance, but how cute is she!

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