So tomorrow is a very exciting/nerve-wrecking day for us. Lucia is getting a Lymphoscintigram carried out. This means we will finally be able to begin to understand what exactly is going on inside her little body. It’s a procedure we had read about when she was just a baby and had always been keen to get done, however, we had been told that she wouldn’t be able to have it until she was around seven or eight years of age.
But here we are – she is only five – and we are booked in to get it done tomorrow in our local hospital. When the letter arrived we were really shocked and surprised as it just hasn’t been on our radar at all. I actually re-read it a few times to make sure I was reading it right as we always thought we would have to travel to London to get it done.
We have had quite a bit of activity around the genetics side of things over the last few months (a whole other post of its own!) and this procedure is being carried out on the back of the results that we have received lately. Lucia’s Consultant Geneticist ordered the test, as what we find out through the Lymphoscintigram will be another piece added to the puzzle that we have been trying to figure out for the last five years.
So what is a Lymphoscintigram?
For those who may not know, this is an examination in which pictures of the lymphatic drainage of the limbs will be taken by a Gamma Camera after a small radioactive injection. The radioactive bit sounds a bit scary doesn’t it! Basically, Lucia will be injected between her toes with a radioactive tracer which will show up her lymphatic vessels so we can see how the drainage of her lymphatic system is working – or in her case, not working. It will take a few hours all in all and will involve a bit of sitting about and a bit of walking about.
Excitement v Fear
We are really excited to be getting it done. To finally be able to take a look inside our girl’s lymphatic system and hopefully see what we are dealing with and how we might use this information to help her. I’ve said before in previous posts that knowledge is power – so I hope this will give us more power.
When it sank in that this was happening I also started to get a little bit scared as well – which I think is completely natural as a mummy. But I am working hard at managing the fear and thinking of the positives that the information will hopefully bring. It was Max’s 9th birthday last week as well so with a weekend of birthday parties to organise I haven’t really had time to think about it all – until now.
I think my main fears are about the actual procedure itself. First of all they have to inject the dye in between the big toe and second toe of each of her little feet. That alone has me freaking out a bit. How sore would it be? Would she sit still to get it done? What happens if they inject and she pulls her foot away and the needle cuts her toes? What is the risk of infection? We are always told she cannot have any needles, injections etc put into her feet or legs because of the risk of infection yet here we are doing just that. But I have to be confident that the doctor doing the test will be vigilant and everything will be carried out to a tee.
How will she feel when the dye goes in? Will it feel strange? Will she feel nothing at all? And then after the test – how will it affect her? How much will it take out of her physically and emotionally? In a recent post (here) I have written about how her body reacts and ‘crashes’ when something big happens, so that is also playing on my mind a bit.
I have spoken to Lucia’s therapist about all of this of course and she will also attend the appointment with us which is very reassuring – for us and for Lucia. I know there will be a freeze spray for her toes to hopefully ensure she feels very little pain and we will use lots of distraction techniques so she doesn’t have to see any needles. I have spoken to her teacher to let her know she will be missing school and, if need be, will also have a recovery day. She actually suggested sending her home early for the rest of the week if she needs it which I was really appreciative of.
A new chapter
But aside from my overactive mind, my overarching feeling is of excitement as this is a huge step in our journey. This feels like the beginning of a completely new chapter in our lives, when we will finally start to understand what is actually going on with Lucia’s lymphatics. When we discover what has or hasn’t formed properly. What is there or what isn’t there. Is she missing vessels? Or nodes? Or both? And where exactly?
The results will tell us so much and hopefully open up so many more doors for us. Whether it be tailoring her daily therapy to better suit her or looking into the possibility of micro-surgery in the future – who knows? But we will finally have some more answers that we have wanted and needed for years. We know there are other tests and procedures that can also be carried out that might even look more in-depth, but this is a fantastic starting point.
So wish us luck – I barely slept last night and when I did my dreams were very strange so I’m pretty sure tonight will be the same. I have packed a bag of snacks and drinks, toys and books and plenty of cuddles from mummy and daddy! But, knowing Lucia, who always manages to take everything in her stride, she will no doubt handle it all superbly. And we will be there to hold her hand every step of the way.