Why a Blog?

I decided to write this blog, as I thought it would be helpful to other families who have a child with Perthes Disease. It is an honest diary of events and feelings.

Hope it helps,
Angela

Monday, 20 July 2009

Annabel is so well after her operation

July 13th, Annabel went in to have her pins and plates removed. Everything went really smoothly before up to the op, compared to the last one. She had some pre meds to relax her and she smiled all the way to Theatre!
The op was approx. 2 hours in total. Bell was however very distressed in recovery as I think she wasn't really with it going in to theatre and didn't know where she was. She was very groggy and was very sick most of the night. She had medicine to stop this.

Come 6am the next morning she woke, very hungry and very with it! My Price did his rounds and all had gone well.

Roger the physio she had last time then came with the crutches and she was well away! Very confident. We left hospital at 11am!

Bell had no pain, and was only on crutches for 2 days. She returned to school today as if nothing had been done. She is a real trooper.

Her stitches will be out in a week and a follow-up appointment is at 6 weeks.

All is well :O)

Friday, 26 June 2009

Today was Bells pre-assessment for her operation


Went to hospital for Bells pre-op today. Was pleasantly surprised by the information I gained. Mr Price initially had told us that Bell would be on crutches for up to 8 -10 weeks after the operation to remove her pins and plates, with a stay or 5-7 days in hospital.


Now Mr Price does have the habit of changing the info he gives us and true to form, he told me that she should be out within 2 3 days after her op and will only need crutches in the first instance for comfort. What fab news!!!!


The only down side was Bell getting upset about the needles again, but she will be having gas first, so is relieved. :)


The op will be on 13th July x

Thursday, 4 June 2009

date set for Operation to remove pins and plates

We have had a date through to have the plates and pins removed from Bells leg. The date being July 13th - her dads and grampas birthdays! It's a little over a year since having the operation. I don't know where the time has gone.

I decided to take the children on holiday, before she has it done (like last year) as she will be on crutches for 10 weeks and have a risk of fractures for approx. 4 months, as there will be holes in the bones. We went to Majorca about 2 weeks ago - Can Picafort Holiday Village Viva. Had a FANTASTIC time.

The kids made some great friends and so did I.

Waiting now for the pre-op on 26th June ready for the 13th July. Bell will be in for about 5-7 days.

Thursday, 12 March 2009

Helping Others

I hope that if you do find this Blog useful, that you will link to it, as I have done when I have come across other family blogs and useful websites.

Many thanks

Angela

Check-up March 10th 2009

Bell has had an excellent few months - very active and no pain. She is still attending hydro and swimming lessons (lengths), in fact she is the strongest and fastest in her class. She is also riding her bike, but aches in the morning - due to using her bum muscles - all good :)

Bell had her check-up, Monday. We had the usual x-ray and a rather quick consultation with Mr Price. All good. She is now due to have the pins removed early June. She will be in hospital for 4-5 days and will be on crutches for approx. 4-5 weeks.


I managed to grab a snap of her x-ray too, to e-mail to her dad, who is away at the moment. You can see the pins and the deterioration of the bone.





Thursday, 2 October 2008

Sept 30th 08 - another 6 weeks check-up

It was Annabel's second check-up after the operation Tuesday. She had been doing really well on her crutches and even better in hydrotherapy. She would not use her crutches in the house and if we were on long journeys - in her wheelchair.

My main concern was how short her leg was - 2.5 cms. Her limp is very obvious, but doesn't phase her. She had the usual x-rays and into to see Mr Price.

He was pleased with the x-rays and where he had cut the bone and pinned it, it had fused and healed completely. I mentioned her limp and he said that the leg should lengthen once he operates next year. It apparently the blood stimulates the growth. I'm not convinced. Time will tell. She has an insole for her shoe, but is only 1cm. Annabel's physio says that she is yet to walk 'normally' and she will not limp so badly once the leg is stronger and muscle is built.

The good good news is that she can now do a few more activities. She is off her crutches and can do cycling, swimming and at last PE at school. Nothing high impact.

The next check-up is 10th February - 4 months.

Wednesday, 27 August 2008

19th August 2008 -The Six Week Check up


Annabel went to see Mr Price on 19th Aug - six weeks on from the op. Annabel has done so well. She was very weak at first and I was worried that she would never use her leg again, as she would say I don't know how to move it, when trying to do her exercises.
but is now great on her crutches and is ready to walk. We still need the wheelchair for long journeys.

She had an x-ray at her check-up and Mr Price was very pleased. You could see the new growth of the bone and where the pins were. She is however, to stay on crutches for a further six weeks.

Her leg was measured and although is only a couple of centimetres shorter, look more like an inch shorter. The physio says it's her compensating. Hopefully she wont walk with a huge limp.

School is to start next week, so hopefully she will be quite mobile and as normal a school life as possible.
Bell on a day out the Royal Welsh Show

Saturday, 12 July 2008

30th June 2008 - The Operation

All was well in the night, Annabel had settled well. She had her casts removed in the morning, which Annabel found quite strange. She still wheeled around in her wheelchair with her legs wide open, as if she still had them on!

Her poor legs were stick thin, bless her, and all crusty! She was offered to have a bath, but declined, so I gave her legs a good scrub and moisturise. Her slot, was to be around lunch time. Before the operation the magic cream was applied, and she was also to have a sedative half hour before. This was given, but then the trolley arrived to take her to Theatre - not long enough to work.

Annabel refused to go, and started screaming crying, so much so, that I had to carry her through the corridors to theatre. An absolute nightmare. It was so horrifically upsetting for all. I'll never forget it.

She had gas, and settled after a while. Then the wait....

Annabel had gone to Theatre about 1:15pm and the nurse had called us to say she was in recovery around 4:00pm. I thought great we can see her, but they wouldn't let us see her was nearly an hour - torture.

When we went into recovery, she looked awful, so pale, with an oxygen mask on, and so still. She was sedated, and would not come fully around for a good few hours. Again, so upsetting for both Darren and myself.

And so we went back to the Ward.

Annabel came round fully a couple of hours later, when Mr Price visited. He explained that she had lost a lot of blood which was normal for this bone operation. She may need a blood transfusion. We were devastated at this news. Blood tests were taken and the level was low. She was given iron.

Annabel was very tired. Her leg was in a sling and was quite uncomfortable. She had painkillers and had to use a bed pan, which was an event in its self. She screamed for fear of pain. She was bed ridden for 4 days -the hardest part of the stay. She coped really well with the pain, but was very frustrated at not being able to get up. Every time I tried to move her her screams would have me in floods of tears.

Annabel finally was allowed out of bed after 5 days. This again was a challenge, but after the screams and shouts, she did it. This was freedom for her to get into the play room with her new friends at hospital.

Every stage was a challenge and she finally got in the hydro pool 8 days after the operation. Again very scared to get in, but once in - loved it!

We were allowed to leave on day 10. The nurse changed her dressing, and we were able to see her wound for the first time. I'd say it was about 8 inches in length, with internal and paper stitches. By the way - I slept there every night and stayed every day only leaving for baths! Not exactly a great relaxing place to be!

Annabel was to take a zimmer walking frame and crutches home. She was still very weak and her legs were very thin.

She was to have hydro twice a week and in the gym once a week.

29th June 2008 - We arrive at hospital

We took Annabel to hospital the night before her operation. I was to stay with her at the hospital, for the duration of her stay, whilst Darren looked after Robbie. It was finally here. Yes it was nerve-racking for all of us. Annabel had kept it together and was so strong. She had a few tears only, saying that she was scared - and so that must be expected.

Sunday, 22 June 2008

The Pre Op Assessment Friday 20th June 2008

We went for Annabel's pre op assessment. We met with the staff nurse, Dr Price and the anesthetist. We had a tour around the children's ward and Annabel got very excited about being there. The Ward is lovely. A great play room too. I will be staying with her at hospital, where she will be about 10 days. She will be resting for most of that time, then with some hydrotherapy.

Feeling a bit anxious about it all now, counting the days.

This is a picture I found of the operation that Annabel will be having. It will take about 4-5 hours. I asked if her leg will be shortened much, and Dr Price said it would be about 1cm.

Looks rather gruesome.