White as a Ghost

I have been worried about how pale Lucy is since her operation. She is doing fine and even went to play out in the sunshine in the garden a couple of days ago when Daddy put up the swing. However, she is still really pale and gaunt.
I always check on her in the night, shortly after she has gone to bed, then again when I go to bed, and often when I have to get up to visit the bathroom, or someone else wakes me up.
Last night it was her sister that woke me and asked me to tuck her back into bed. I walked into the room and it felt like my heart was in my throat. Lucy was lying on her back, mouth slightly open, white as a ghost and eyes half open. To be honest, she does sleep a lot like this..i.e. mouth and eyes a little open, but it was just a shock seeing her so pale as well. Of course, you can't see her breathing easily either because of the halo vest covering her chest. I did however notice a small fall and rise of her tummy.
I had to touch her, just to see, just to make sure.
It was such a relief to feel her warmth.
She stirred in her sleep and asked me to turn her over, so I helped her on her side and she promptly started snoring.
If only she had been snoring when I walked in the room.

Tomorrow she goes to have the halo checked and the stitches in her head and neck taken out. She is now terrified of going to hospital. After all this time, she was always perfectly fine with going. I guess last week was just too traumatic for her and she doesn't want to go through anything like that again.
I don't want her to go through anything like that again!

Now it's Time to Recover

Lucy had her second operation yesterday morning. She went down to theatre about 11.30am and was asleep by 12, we went straight to her as she came out of theatre at 6.15p.m. Waiting for your child while in theatre is the most surreal experience, you go through a plethora of emotions. Then when they take longer to come back than you expected, we were told four hours, you start worrying, really worrying.

We were told that they were performing a fixation of the C1 and C2, this means two small screws in either side and a small titanium plate joining them up to keep them perfectly straight. This means that she won't be able to turn her neck as much as before. I'm sure she will cope, she hasn't been able to turn her neck for the last ten months anyway. We were also told that she might need a further plate on the occipital joint at the base of her skull which means that she wouldn't have been able to look up or down either. Again, she hasn't been able to look up or down for the past 10 months. However, once in there they decided that they wouldn't need the plate on the occipital joint. They were not happy with the C1 on the left side, the bone that had deteriorated, so they performed a bone graft from her skull and added it to the C1 to give it more strength.

We had been told that if they were happy with the fixation then she would not need the halo back on, however, because they had to do the bone graft she needs the halo back on until it fuses, so it will be around six to eight weeks before it comes off. Such a shame, we'd have liked to have been rid of it.

Lucy was back on the ward by 7 p.m. and she was really sleepy from the anaesthetic and the morphine. She had a drip for fluids and a catheter, so no need ot move or bother her, she just had to sleep it off. And sleep she did, all night and all day today. She did wake for short periods, but struggled to stay awake and went straight back to sleep. She woke in the night during obs. and wanted to be turned over. She became quite distressed so the nurse pushed her morphine button. She had morphine constantly pumped into her but she also had a button to give her a little extra if in pain.

She got a bit panicky when they came to take her blood. She has developed a real hatred of needles. Then she was distressed when taken for a CT scan but only because they had to move her from her bed to a trolly and back again. In between being moved she was ok. She says she is not in pain, but I think that proves that she is hurting.

Tomorrow, she should be more alert and we will need to move her, at least get her sitting up. She also has to have the halo vest altered because it's too high up.

Her stitches will be removed in ten days time.

Overall, it all went well. They didn't hit any problems other than her suffering a big loss of blood and having to have quite a hefty transfusion.

We have to hope now that it has all been worthwhile and her head stays upright. She will never be able to move her neck normally, but at least she will be safe, comfortable and hopefully pain free.

One Down, One to Go

The last three days have been a complete emotional roller coaster. First, Lucy's operations were moved to different dates, then they were postponed altogether, then yesterday afternoon we had a call saying it was all back on and could we bring her in immediately.

So we arrived on the ward and had a nice little cubicle, Bed no1. We had a fairly good night despite it being a very noisy ward. So many crying children, it's difficult to ignore them.

This morning Lucy was a little panicked. We had told her that she was having the halo back and she'd been ok with it. She was ok with it last time, she dealt with it much better than us! However, this morning she decided she didn't want it back and was distressed.

By the time we took her down to be anaethetised for theatre she was really upset. She screamed when given the canula, and gagged and sobbed as the anaesthetic was administered. It was very distressing.

The manipulation and halo application went really well and took nearly an hour shorter than last time. We could see why when she got back...four screws instead of eight? Also, her neck is not very straight. Still it's just a temporary measure until the next big operation.

On Wednesday she will go back to the theatre, hopefully she'll be keeping her canula in until then so no big needles. The will open her neck and attempt to screw her bones in place along with a metal plate. To create a better fusion they will also had some bone graft, taken from her thigh or her skull. She is going to be hurting afterwards for sure.

Once they have completed the fusion they will decide whether or not to keep the halo on for a while. She could be coming home in five to ten days after the operation depending on her recovery.

During the time leading up to operations you feel so anxious, so worried that something may go wrong and that you will be leaving the hospital without your child. You don't want to think that way, but you know it's a possibility and it hurts to even think about it. Then while your child is recovering on the ward another little patient loses their battle and your heart starts pounding and the pain feels so real even though you know it's not your child. Then shortly afterwards, yet another patient loses their battle. And you cry, you don't even know these children, but you know it could so easily have been your child and you feel the pain of the parents an family, you feel their loss.

Having a sick child is so emotionally draining.

Almost Time

I have just received a call from the hospital asking me for Lucy's measurements for the halo.
She had a shower yesterday and complained she didn't like showers....just  a few more days and she won't be able to shower for weeks, maybe months.
I put on her t-shirt for her this morning, removing her cervical collar and pulling it gently over her head. Just a few more days and she won't be able to wear t-shirts.
Then I gave her a gentle cuddle and kiss. Just a few more days.......

I can't really explain how I'm really feeling right now. I was talking with Lucy's dad last night and we both feel the same. The main feeling is fear, we are both really scared that something is going to go wrong, we can't even mention the worst case scenario...over-reacting...maybe, but always a possibility. We are worried about how she will cope with it all next week, it's definitely going to be one of the worst weeks of her life and we don't want to see her suffer. We are worried that it may not work and all her suffering will be for nothing. Another over-reaction? Can you blame us, we thought the physio therapy would work but it didn't, we thought the manipulation would work but it didn't, we thought the halo would work, but it didn't, of course we are not going to have complete faith.

There are so many things that can go wrong. There is no promise of a full and complete recovery, she won't be able to move her neck very much at all afterwards. There is no way we can't go through with it, it's not just the twisting of her neck, or the pain, she can cope with that. It is getting worse and we can't allow that, the more it slips the closer it becomes to being fatal. Quite simply, if she doesn't get it fixed she could die.

I'm trying to keep myself busy with planning. We are all hoping to stay at the hospital with her until after her operations. Dad will stay by her side and I will stay in a family room with the other two little ones. They will have to have a few days off school, sorry Mr Gove I know you won't approve. If they can't accomodate us at the hospital then I will stay by Lucy's side and Dad will stay with the other two at his mum's. Simply so there is someone to look after them while he is at the hospital all day with me.

I have to leave things in order at home so the older two can look after themselves, so a weekend shop is in order and I'll have to make sure all the laundry is sorted.

So it's going to be a tense week coming up. Please keep Lucy in your thoughts and hopefully I'll be bringing her smiling face back home again as soon as possible.

Two Weeks to Go

We have a date for Lucy's operations. She will go into hospital on the 8th June and have the first procedure the following morning. Then she will have the fusion on the Wednesday, just two days after.
So now we have two weeks and then it all begins.
Lucy is fine about it. We've talked about it and tried to make her understand but it's hard to get through to her sometimes. Her main concerns have been about the anaesthetic, she does not want gas this time. Also, she is worried about not being on the same ward as she usually is. She has been assigned a different consultant so she thinks this means a different ward, but that is not the case. She will be back on her regular ward with her favourite nurses and everything will feel familiar to her.

That seems strange saying that, I never really thought I'd be thinking of a hospital in terms of being a familiar place. It has become so though. We go to the ward and everyone knows Lucy's name. We go to radiology and we are greated with 'hello Lucy' and rarely have to show an appointment card or letter, ditto when we go to the physio therapy department. We can't walk around the hospital without someone recognising her. It really has become a second home. Yet it seems such a short time ago when we were first in A&E watching the new automatic doors being unable to close properly. Lucy still laughs about that, probably because I tried to keep her entertained during our long wait by saying the doors where shy but in love and trying desperately to kiss, but whenever they got close they were too shy and opened up again.

I'm getting in all the hugs I can while she is free from the halo. I'm dreading its return, I can't get close to her. This time she will be in much more pain too, how do I cope not being able to hold her and make her feel better. I'm already dreading the thought of her being in pain. In fact whenever I think about what she has to endure I feel sick. I really hope and pray it's not too bad for her.

The Way Ahead

Today we had the long awaited call from the consultant at the hospital.
We were told that sometime in the next six weeks that lucy would be going into hospital for two procedures. He couldn't give us a specific time because he has to work out when he can fit her in for both procedures where she won't be in hospital for any longer than necessary and so that they can both be performed a week apart.
The first procedure will be another manipulation where her bones will be pushed back into position while under a general anaesthetic. Then she will be fitted with the halo again.
A week later they will open her up and insert a metal plate and tiny screws to keep the bones in position.

After the operations she will be wearing the halo for as long as necessary. Then we will see the end results. We already know that her neck will never be completely straight, and that she will have limited movement. How bad it will be we will have a long wait to see.

I can't say I'm not scared because I am, I'm terrified. I already know the implications of the manipulation and the halo as she's had these done before. That is scary enough. I don't yet know the implications of the fusion and I'm not looking forward to hearing about it. It sounds like she will be in theatre a long time.

At least we have some time now to mentally and practically prepare for her stay in hospital.

We have not yet heard from the paediatric rhuematologist she was referred to, and they probably won't be able to assess while she is in the halo, so I'm going to contact them and let them know what is happening. I already know that the communication system in the hospital is not that good.

A Night At the Theatre

Last night I too the girls to see a live performance of Jaqueline Wilson's Hetty Feather.
We've been to live shows before and the girls have loved it. So far we've seen The Gruffalo's Child, Room on the Broom, What the Ladybird Heard and Andy and Mike's Tick Tock Time Machine. Lucy has coped really well, she doesn't mind being around lots of people, she doesn't mind loud noises for a limited amount of time, she enjoys the shows and interacts well. The only time I have had problems with her it wasn't a live show but a 4D movie...which included smells..that's her weak point, she doesn't like strong smells.

So we went along to watch Hetty Feather just like a normal family. I was a little worried because we were going to the evening show which finished past the girls bedtime. Leila gets tired and Lucy doesn't like her bedtime routine changed. The show was also just over two hours long, which seemed a long time to expect Lucy to sit and watch. She can watch a whole movie, but just about and most movies are only about an hour and a half. The extra forty five minutes of this show were going to make a difference.

Well, she didn't do too badly. She really enjoyed the show and was completely attentive from beginning to end.

She breaks the mould of what people expect from autistic children when it comes to empathy because she cried at all the sad parts. Well, I say cried, she sobbed, I had to sit hugging her as she cried her little heart out, I had to keep reassuring her that it would be a happy ending. It was a happy ending, and she cried at that too. I have seen her cry at things before, but it's usually involved animals. She did cry with happiness at one of the High School Musical films the first time she watched it. So, I'd say she was empathetic, very much so. Even if she has little control over how she expresses herself, at least she is expressing the correct emotions at the right times.

When the show stopped for the interval she knew it was past bedtime and insisted that we went home right then. I told her that it would be a shame to miss the second half and we wouldn't know what happened. She didn't seem to care. So I told her that if we went home right then, we would still be late for bed, so why not watch the rest of the show anyway. She wasn't happy with that but did see my point.
Finally, I persuaded her to stay if I bought her an ice-cream. This made her happy. Just like a normal child.

As soon as the second half started she was totally engrossed again.

They were both really tired but completely fired up when the show finished. As I said before, it had been a happy ending and Lucy had cried, probably a little too much, but she said she was really happy. Then we got up to leave and before we had left the auditorium she started talking about Pokemon. It was like we had not been to see the show, she didn't want to speak about it. All the way home she talked non-stop about Pokemon, Mario and Sonic the Hedgehog. So much so that my head spinned. Leila was trying to talk about the show and what she had enjoyed, but she wouldn't listen and didn't want to take part in the conversation. In fact, even when I spoke to Leila, Lucy just carried on talking about Pokemon et al. On the way home Leila sat with my niece who had come with us and ended up falling asleep on her after they had chatted about their favourite bits of the show. Normal.
Lucy talked all the way home, not mentioning the show at all. It was as if she couldn't think about it because it had affected her so much, so she talked about her favourite things instead. Not so normal.

At home we still had to go throught the normal bedtime routines even though we were nearly three hours late for bed. Eventually, she stopped talking about Pokemon, Mario and Sonic and went to sleep.

Today she has talked about the show, she remembers it all and told us her favourite bits. One part was when Hetty gets a spanking. We don't do physical punishment in this house so you'd think she'd be shocked, but the scene was performed comically and the very last spank was performed in really slow motion, which was quite funny to see being done live. This scene has been re-enacted by Lucy over and over and over and probably will be for days. (When I say re-enacted, there is no spanking involved, she just copies the faces and movements of the actors and they were when the last spank was performed.)

To us, she is normal, quirky maybe, but she's our girl and she's always been the same. The routines, the repetiveness, the randomness of her conversation topics, the incessent talking about what she wants to talk about even when no-one is listening to her, the lack of control over her emotions, to us, all normal, all Lucy.

She managed to sit through a two hour plus show and pay attention the whole time, she showed emotion at the right times, she stayed up past bedtime (although, not completely without complaint) and she enjoyed the evening. All normal, all typical for a child of her age.

People have pre-conceptions about autism, they often think that children can't sit still, always mis-behave, can't control themselves and so on. In fact, on the outside, a lot of autistic children can look just like other children, and behave just like other children. No-one on the bus home would have thought of Lucy as strange just because she was talking about Pokemon, they didn't know she'd be talking about them incessently for at least an hour, they didn't know that we'd just been to see a fantastic show and any other child would be wanting to talk about that, they didn't know that a lot of what she was saying would be repeated over and over and over. To them she was a normal, excited child on their way home to bed.