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.
Before bandaging and after bandaging. I know the angles are slightly different but you can still see the difference.
Left photo – first time bandaging for 24 hours
Right photo – second time bandaging for 72 hours
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!
Holidays! (A bit breezy!)
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.
Step 5
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.
Two wee pets
Bandaging is a tough thing for any age. Each time you do it the results on how she will make it through the days may be different , just a little tighter pull on a wrap may have made the wrap more comfortable or possible a feel of discomfort after a few hours of sleeping . Many times I have woken up and have had to rip off my toe wraps as i felt like I was going crazy with them on. I always wrap for airplane flight , long car travel, or going to places where I may have to stand in line for a long time(like an amusement park). I wear an adjustable “dr school” like sandal on my wrapped leg and my tennis shoe on the other. I buy a bigger sock to cover my foot bandages to keep them clean. In the last few years I have started sponge wrapping too, I guess it’s suppose to help break down some hardden tissues , I just love my ciraid Velcro wraps. Three sections . It allows me to place them right on top if my stockings when might have to travel just an hour or shop at the mall for a few hours , whip them on and off is easy , but helps advoiding the heavy leg fatigue by late afternoon. I haven’t followed you guys for too long so sorry if I ramble on for things you already know ? The most important thing is that her the foot of bed is elevated so her leg will drain all night. When we travel I put my suitcase under the foot of mattress to elevate it ?That should help her foot a lot
Hi Debbie, thanks so much for the comment and all of the information. You didn’t ramble at all. We are always so grateful when people take the time to comment and give us advice. Especially on something that is so new to us. The bandaging worked really well again though it is mad how within a few days you can see the fluid gathering. However, the tighter compression is doing a great job for her. We have never wrapped before for travelling or anything, just ensured she wears her garments and we put a pillow under her legs for long car journeys. It’s interesting though to hear how wrapping helps to stop your ‘heavy leg fatigue’ – I have said before we have no idea how Lucia’s little legs feel so by the end of the day we always give her plenty of elevation time. We do also raise her bed – or rather the middle of her bed. She isn’t even half the length of her single bed so we have put towels under her mattress half way down the bed to help fluid drain better at night. I must actually remember to do that when we are on holiday as well. Thanks again for the comments, it is so so appreciated.
Hi Jo-Ann great to hear Lucia is coping so well with bandages and getting great results. We also get fantastic results from bandaging too. Do you bandage yourself or is it your therapist that does it. I learned to bandage and sometimes when Aoibhe wakes uncomfortable if the distraction doesn’t work I have to undo bandages and readjust and this can help but other times will have to undo and start again. As for tiredness this is part and parcel of the toxins being removed from her system and the advice here is drinking lots of water to help flush it through. She will most likely be going to the toilet more often too but I bet you’ll find once bandages are removed and after a day or two she’ll be bouncing with energy. Hope your new garments work. What company are they from?
Great to read your blog. We are on the countdown of last few days before back to school. Enjoy the rest of the holidays ?
Hi Donna, so great to hear from you. Our therapist has done the bandaging for us as this is only the first couple of times we have tried it. That’s great you have been taught to do it so you can take off and re-do if Aiobhe is uncomfortable – I suppose because she is that wee bit older it is a bit harder to distract with a game or something. Thanks for the info on the tiredness…that makes sense. It takes her days to recover and her appetite is the same. Deffo more toilet trips too – her bowels seem to go mad. Lucia’s garments are Juzo Expert and we’ve been using them for a year or so now and they are excellent. Full tights except on the right foot it is an open toe and then she wears the toe caps on that foot. I highly recommend them. Can hardly believe school is back in just a few days – time absolutely flies. Hope you are well x