Another bandages post! But we have a lot more to add this time. Lucia is currently bandaged from her toes to the top of her thigh and this is her third experience now of being all wrapped up. She has had them on for almost 48 hours and so far she is once again handling it like a little star, though we can see her a bit more tired than usual and her appetite has pretty much gone.
To pick up from where we left off the last time – we tried the bandaging for 24 hours the first time round to see if she could cope with it and saw a fantastic difference in her swelling. Although the fluid did return pretty quickly, it was brilliant to see the impact this treatment could have on Lucia’s condition. So after chatting with Lynne we put a plan in place that has gone a little something like this:
1. Bandage her to the top of her thigh (use a little bribery with a new toy enable this to happen!)
2. Keep the bandages on for longer – 3 days and nights (use a little bit more bribery with a new toy to enable this to also happen!)
3. Measure her for compression garments as soon as the bandages are taken off at this ‘reduced swelling’ size
4. Order new garments
5. Repeat steps 1 and 2 when the garments arrive to get her leg and foot back down to that ‘reduced’ size so she can wear the new garments and hopefully maintain this ‘reduced’ swelling for longer.
I am happy to say we are currently at step 5!
Let’s go back
On a Friday at the end of July Lucia got her bandages on to her thigh and we were aiming to try and encourage her to keep them on until the Monday when she would then be measured up. We were also heading off on our holidays on the Monday so it was an added incentive. And she did AMAZINGLY. We were so proud of her as this was a long time for a 5 year old to endure. But she did it.
She slept through the first night with it on no problem. The second night she was up a couple of times and the third night we were up for quite a few hours as she just couldn’t sleep. She had a few niggles and itches under the bandages so we did our best to try and distract from them with games, films and stories.
As the weekend went on we could also see her energy levels dropping and fatigue setting in as well as her appetite becoming non-existent. It doesn’t be great at times anyway (fussy eater anyone?) but this was a whole new level. She didn’t even want her favourites – including chocolate.
However, she still did manage a houdini moment and escaped outside with Max before I realised – welly on one foot, bandages on the other!
Then the bandages came off on the Monday and the results were simply brilliant – the extra few days had made even more difference as you will see from the photos below. And her leg and foot felt so soft and so bony – those of you who follow the blog will know we don’t often get to feel those wee bones.
All the measurements were taken and we put her into her regular compression and headed off on our holidays to enjoy some family time together on the North Coast of Northern Ireland – our very favourite place in the world!
However, the first few days of holidays her energy levels and appetite were still pretty low – like her battery was down and she was a dulled down version of herself. This lasted until Thursday when she woke up, asked for two bowls of cereal and was back to her usual bubbly wee self!
Our thinking was that her little body was struggling to process the extra fluid being sent through her system. That her organs were under strain and having to work overtime to deal with these extra pressures and therefore really taking it out of her. If anyone else who wears bandages from time to time can relate or explain please feel free to get in touch.
So as I said we are now at step 5. Her new garments arrived on Friday so she got her bandages on again that morning with the aim of making it until Monday (tomorrow). Again her appetite is pretty much gone and she has been having lots of niggles including itches and a sore baby toe and side of foot, but we’ve been working the distraction techniques again. We also hit the toy shop again on Friday for a few more little goodies to take the edge off it all – and some for Max too who fractured his wrist two weeks ago. So we currently have Lucia bandaged up, Max wearing a splint and both being so brave.
Lucia is looking forward to getting the bandages off tomorrow and getting some relief. It will be great to see the results, get her new compression on and see what difference this treatment might make – and to see if it may become a regular addition to her current treatment plan. As I say pretty often, we are always learning with this condition and if there is anything extra we can do to keep on top of it then we are in.
Final note – incredible kiddies
I cannot begin to tell you how proud we are of both of them. Max has had a tough couple of years (five broken bones and a dislocation) but still keeps smiling, stays positive and rarely complains even though he is desperately missing his football. He has had such a bad run of luck and the unfairness of it all breaks our hearts. Hopefully though, he will be back playing in another month (wearing bubble wrap under his kit!)
And for Lucia to have to go through everything that having Lymphoedema entails on a daily basis – plus this new treatment – and coping with it all in her own wonderful way, inspires us everyday as well. Five year old’s should not have to go through all of this, but her resilience and understanding at such a young age really is amazing and helps us when we are feeling a bit low about it all.
Incredible little people.