I had planned to write this post over the weekend when we got Lucia’s bandages off, but we had some gorgeous weather and made the most of that instead!
My last post focussed on Lucia getting the bandages on and how she managed (amazingly!) – if you want a wee read click here. This post is about the results and future plans.
So – Lucia managed to keep the bandaging on for a full 24 hours which was brilliant for her first time. She slept all night in them and the only issue she had was not being able to get her ‘snuggly suit’ (fleecy onesie) on in the morning because her ‘pass the parcel’ was too big. (She nicknamed her bandages pass the parcel because it had so many layers like the party game!)
We headed in to see Lynne that morning and she was delighted that Lucia had managed so well. She told her she was so proud of her and had done brilliantly which made Lucia feel very proud of herself. (This woman is so special).
She then cut the bandages off to see if they had reduced her swelling. I should say here that Lynne didn’t put them on as tightly as she could have – this was more just to give Lucia a feel for them and to see how she would react. So bearing this in mind we were still amazed at the results.
Her leg looked and felt so different! The bandaging had visibly moved so much of the fluid from the outside of her leg and her ankle had the most beautiful little shape to it. And as for her foot – I could feel all of the bones on the top of her foot and her little toes were so long.
Normally when we take off Lucia’s compression at night – and particularly after she has worn her toe caps and shoes – we can feel one of the bones on the top of her foot. This time though it felt so strange to be able to feel the solidness of her whole foot if that makes sense? Hard to describe! Lynne said it was because there was more ‘depth’ to the swelling reduction rather than the superficial reduction of compression garments on a day-to-day basis.
And this ‘depth’ of reduction applied to her whole lower leg and foot. You can see in the before and after photos what I mean.
We were definitely impressed by this and excited to see how tighter bandaging put on for a longer period might go. So much so that we have planned it in for August time.
By the evening though we could see the fluid starting to gather again – you can see this in the picture below which shows the results just after bandaging (left photo) and then her limb in the evening of that day (right photo). You can still see the difference in comparison to the original ‘before’ photo but it just goes to show how quickly that fluid starts to return.
It also just reminds us that we still really don’t know what we are dealing with when it comes to Lucia’s lymphatics – where the issue is, what the issue is – is it a node problem? A structural problem? Both? And until she is a little older we won’t be able to find this out as she has to be around eight years old before any type of lymphoscintigraphy test can be carried out. However, there has been significant movement on the genetics front which I will post on soon.
Anyway, we were definitely happy with this first little venture into bandaging, how Lucia coped with it all like a little star, the results that came from it and the plans we have now put in place to try it again in a few weeks’ time. Watch this space.