Saturday 22nd November

By Sunday Emma was a different child. She was moving freely on our bed, in fact could get up on her knees. But we noticed that her legs did not seem to be well abducted - maybe the brace had slipped somewhere. So on Monday morning I called the orthopaedic office to see if they wanted to see her earlier then her arranged appointment on Tuesday. We didn't get a call back till late on Monday, so her appointment was left as it was. We had two appointments on Tuesday, the first was with the Surgical Appliance lady, our second appointment was in the afternoon in clinic, where she would also be available.

Itchy rash
Emma had developed a very itchy rash on her back, on Saturday she was crying out because it was very itchy, and for a six-year-old, unbearable. I put a cotton vest on Emma and slithered it under her brace. I wasn't sure if it was a sweat rash, eczema or a reaction to the padding. I had tried aqueous cream, but called a local pharmacy for advice. The pharmacist recommended taking histamine, such a s Piriton (which would make her sleepy too) and to try calamine aqueous cream. This did alleviate the itch a little more, but I had to gently scratch her back to enable her to go to sleep. Emma was not comfortable during the night, and I had to repeat the applications. By Sunday you could see red spots all over her back under the brace. A few came out higher up on her back and under her chin. I called the out of hours doctor's service, Barndoc, to see if someone would come and visit. We didn't want to subject Emma to another car ride and didn't have the wheelchair yet either. They wouldn't come out to see her - only the elderly! But the doctor suggested a cream called Eurax which can come with a mild level of hydro cortisone. This cream did seem to make a difference, she felt less itchy quite soon after the application.

Fitting the brace better
At our first appointment on Tuesday, the surgical appliance lady said the thigh cuffs were too loose and started trimming the padding and plastic to make a better fit. This probably explained why Emma could squirm around. She also felt the abduction had slipped but in the afternoon clinic appointment she'd be available to help make further adjustments. We saw the registrar who could see what I meant about lack of abduction. They decided to take the brace off to adjust it, but Emma was reluctant saying she was 'comfortable'. This made me laugh, the real reason was she had to remove her shorts a knickers. I had bought some large 'shorts' type that could go on the outside of the brace and had no elastic to press on her scar. I said it was OK to take off as I wanted the doc to see her back

The doctor winced when he saw it, it was a very large purplish rash which looked very itchy and uncomfortable. He decided I was probably doing the best for now, introducing the vest, taking Piriton and the Eurax cream - not to try anything stronger. But he admitted it wasn't his area so we mutually agreed a GP visit would be best. As it was outpatients, there was nothing they could give there.

The back of the brace was not covered adequately in the padding, and it had a seam going down the middle which was probably causing the rash too. After half an hour of adjustments they got Emma back in - with one final amend to make it slightly less abducted and causing Emma pain. I was then left to get Emma's shorts on, we could no longer slip the knickers and shorts up over the outside, so with a pair of scissors, tape gauze, I cut the seam and tied the edges together. The bright yellow Airtours shorts had done their job!

Thanks to grandad who held onto Emma while I fetched the car from the top floor of the car park. We've applied for a blue badge, but it will take a while, I'm not convinced we will get one, but I couldn't of got in a normal car parking space and get Emma out into the wheelchair. The car parks are always very busy during the day.

Sore right knee
Emma complained the right thigh cuff was digging into the back of her knee. It was very tender to touch. We decided to move the cuff further up her thigh. Andy eventually found a screwdriver that fitted and we moved it up about 5-6 mm. This helped a great deal. the next day when I was getting Emma up and downstairs for a change, I noticed how her right leg was swollen. Her right calf was more than an inch bigger then her left. I released the strapping a bit and left her for a while, but it was tender to touch on the front. A call the the orthopaedic office got me passed very quickly through to the doctor. I was to get Emma to lay down and raise her foot above her heart level. The pressure on the back of her knee had caused a 'backlog' and should go in an hour or so. It did! We then took our first jaunt out to the school to pick up big sister and see a few friends. This really lifted Emma's spirit.

Emma up and walking
It's Sunday today, the registrar had told me another week of non-weight bearing as they had abducted her legs further. But we decided today, she was in good spirits and no pain. The rash had abated (despite a VERY unhelpful visit to our GP clinic. The doctor we saw just said 'what do you want me to do about it?' - we did come away with some barrier cream Epiderm, but I think the Eurax cream and Piriton had helped the most), to let Emma stand and see if she could walk.

Emma was very wobbly at first, unsure of how to move. I had to demonstrate how to move her legs, but that was it, she was off...

Tenotomy operation

We finally got a phone call last week from the surgical appliance officer. It seems getting hold of the brace was not as straightforward as the surgeons thought. There was too much red tape involved; being a preferred supplier, navigating through customs, it was all going to take too long. They had found a British importer who had a very similar brace and needed to measure Emma before deciding on the size. Once they had that they could get the brace couriered over and the operation could go ahead the next day.

Later the next day, and having Emma measured, we got a call that we could bring Emma in by 10 the next morning, nothing to eat after 7am. It was no longer to be a day clinic and they wanted Emma to stay in one night. I packed a little suitcase - prepared this time (just a suspicion it might be longer then one night). I added leggings, vests, strong shoes to walk in and not just her favourite Crocs. As you will see later, this showed I was not prepared for what lay ahead!

Emma was quite excited - looking forward to the adventure. I told her she would be a little sore after, but would feel better quickly. We were shown a bed, the same bed as the summer when she was in traction. Saw various people to answer all the pre-op questions. The SHO was lovely with Emma, instead of drawing and arrow on her left leg he drew a cat from her t-shirt. I told him I had brought with me leggings for her to wear as I'd been told the brace was not comfy against the skin. He wasn't sure but to take them to the theatre with me to hand over. The anaesthetist made it fun too. So when it was time, we left to walk over to the theatres, had to wait around a while, Emma got changed, we were asked name and dob about 2 million times! The consultant arrived with the brace, wasn't what I was expecting - it looked very futuristic, all white like Eve from Wall-e. He said it was a very simple operation, would only take about 10 minutes and the clothing I brought wasn't necessary yet.

When it was our turn, Emma was not scared. Unfortunately they had difficulty getting the needle in her hand, then Emma did cry, so they had to use gas. She held her eyes wide open when the anaesthetist said she was asleep and wouldn't remember anything, then her eyes closed and I had to leave and return to the ward.

Of course that was the hard part, she wouldn't be long and 45 mins later I was called back to recovery. Emma looked all bleary eyed, spoke with me a little, then said she couldn't see, then said everything was blurry. The anaesthetist reassured me, it was normal and she'd be OK soon. I was shown the brace, she did look like a robot. The consultant came to say hello, said it all went OK. Then told me something he hadn't mentioned before, Emma was to wear the brace for two weeks solid, only sponge bed-baths and to be non-weight bearing for the first week. So no changing of clothes and the padding wouldn't of made that easy either. The brace was against her naked skin and a bed pad had been folded up and placed as a nappy.

Now I realised my folly in the clothing I brought with me. I thought I'd been well prepared, but what about knickers - should I have been advised to get large nappies? I would have to amend trousers to fit - velcro up the sides?

Emma was comfortable till early evening till the medication started wearing off. We had to wait some painful time before she could have more pain relief. As you can see from the pic, there is lots of padding. Emma did suffer with a lot of pain that first night. She had repeated muscle spasms that came in waves. The combination of paracetamol, ibuprofen and codamol were not enough. They tried codein instead, but she was still in pain. So we both had a difficult night. In the morning we saw the registrar who said he could give something for the spams. And 20 mins later after having Diazapam they subsided.

Now I'm thinking here, surely they know this can happen - why wasn't it written up so she could have it if need be. The physio came to visit - another Emma, she was super with the kids, but had to battle with their fear of moving and the pain that might cause. Emma did not want to use the bed pad to wee in, it was not a nappy in any case. It was just going to be too painful to get her on a bed pan. So the physio was able to eventually find a commode through a lot of phone calls. I did have to leave the room for Andy and the physio to get Emma onto the commode, she hadn't been for over 24 hours! It's been a difficult day as another boy had screamed intolerably as they had the cut his cast after just having a big op on his leg.

I listened to Emma scream from the parent room, not for too long, and a great relief to go to the toilet. If we could have a commode at home we could leave, a wheelchair wouldn't be available till after the weekend. In the end, they said they couldn't deliver till the next day but Andy volunteered to go get it from the warehouse. So a mad dash was made - too much traffic, but they waited. In the meantime Emma became very uncomfortable and decided she preferred to stay another night. Good job she did, as the evening progressed her surgery site became very painful and she started screaming with the pain.

This went on all through the night, with small breaks when she'd conk out, then resume again when she woke a few minutes later. It was terrible for Emma, me and the other poor kids in our ward. The nursing staff came when they could to give her more meds, but nothing quite broke through. By daylight it had eased a bit, but she was so pail and unhappy. The registrar arrived, surprised to see us. I told him what our night had been like. He decided to issue oral morphine, if more unbearable pain happened.

This we hadn't really been prepared for. Having been told it was a simple little op, would take 4 days to get use to moving in the brace I had just assumed, she'd be up a walking in days - actually walking out the hospital, and she'd be a bit sore. It may be a very simple operation, but for some children, it is very painful.

We did return home later that day, after a dose of morphine for the journey. Although our med bag did not contain any strong pain relief as I was told she'd have, in the end she did have a good night. By the end of Saturday, she started moving herself around and by Sunday Emma was a new child. No apparent pain and throwing herself around our bed! How these kids feel so better so quickly after being in so much pain - it is a real wonder.

Waiting for re-schedule of operation

Emma was due to have her tenotomy operation last week, but the brace hadn't arrived in time. So for now it has been postponed. The brace is coming from America - perhaps it got delayed in the elections going on.

Last weekend we thought we'd take the girls for some fun time, as we thought Emma wouldn't feel like going out much after the operation. We had a nice meal out, then on the sunday we took them to a small local wildlife park where we got to feed the animals, watch the funny otters, pet a snake, skunk, bearded dragon. Emma did make use of the buggy we have on loan from the Perthes Association.

Emma enjoyed feeding the zebra.

The otters were lots of fun; mum, dad and six babies.

We are noticing more and more how short Emma's left leg is, She is walking with a straight leg again, not bending her knee properly. This cannot be doing her muscles much good. I think she needs to see a physio to teach her how to walk better. Emma has experienced pain in her right leg, especially the knee. The last few days at school she has asked for the buggy to take her to school - OK this is downhill, but at hometime too - not so good uphill ;-). I'm not sure if she is being lazy on some days, or it is becoming an effort.

Emma's class had made her a lovely card. It was huge with lots of little letters and pictures inside wishing her well. I then had to tell them the operation got cancelled. But it was a lovely thought.

The girls had some fun at halloween, I had two pirate ghosts!