Back at Home - 29th April 2010

Day 1 at home.

Yesterday was a long day with a very different outcome to that which we'd expected.  A better prognosis for Edward in the long run, but it does mean a longer time in the Spica cast.

When we arrived at Queen Mary's it was clear that the surgeon was all set to perform an open reduction to force the femur into the hip socket by scraping, re-shaping and, finally, breaking the femur.  So we were expecting a minimum of 2 nights in the hospital during which time Edward would be on strong pain medicines.

So, it was a real surprise when the surgeon left the theatre to tell us that the femur had popped back into the socket very easily - all much better than we were expecting.

This means that Edward didn't need surgery yesterday but has been set in a cast until 2nd June when an osteotomy will be performed, followed by a further 6 weeks in a Spica cast.  Bad news in the short term but much better for Edward in the longer term.

In the Hospital

Wednesday 21st April 2010

It's been a week since my last post.  In that time we met with a family who have already been through this procedure, we've acquired a Spica chair and we've visited the hospital where Edward will be treated.

I would like to take this opportunity to say a big thank you to STEPS, the charity which has provided invaluable information and put us in touch with parents who have first hand experience of DDH.  It is because of STEPS that we met with Lee and Louise, parents of Freddie (now aged 6), on Sunday.  Freddie had an open reduction aged 18 months and has loaned Edward her Spica Chair - thank you Freddie.

It was also great to have a chat with Freddie's mum and dad and benefit from their experiences - their help is very much appreciated.

On Tuesday we visited St Mary's Children's Hospital in Carshalton with Edward.  The hospital is based at St Helier's - an absolute eyesore - but, as long as Edward is well cared for, we can put up with the unpleasing aesthetics.

And so the scary, unbearable to think about, countdown begins...

14th April 2010

Finally the insurance company have agreed to cover Edward's surgery.  Now that I've received the authorisation code the documentation is signed and sent off.  2 weeks today!!!

Sunday 11th April

Our visit with paediatrician on Friday, coupled with a new post from a parent on the Steps website (http://www.steps-charity.org.uk/), has reiterated my anger at Edward's late diagnosis.  The operation is too soon for me to seriously contemplate doing anything but I am determined to take this further.

Saturday 10th April

Another meeting with the surgeon at St Anthony's hospital yesterday. What a nice man Mr Churchill is. We turned up armed with questions and he patiently answered them whilst obviously trying to reassure us that Edward is in safe hands.

It's still daunting but this has to be done and now we just want this wait to be over.

Today Edward managed to climb up the ladder to the top of the slide and come down without any assistance.  It was another unusually warm, sunny day.  It seems so cruel that, just when he's starting to get a bit more mobile, we're going to be restricting his movement.

Thursday 8th April

Edward and Katie came home from Grandma and Grandad's house today. It was a beautiful, sunny, warm today - felt like the first real spring day we've had all year. It was so great to see them both. I kept the patio doors open and they were in and out of the garden laughing and generally having heaps of fun.

Edward is practically running now - although still with a very pronounced limp. That said it's amazing what he can do when you think that his right hip is dislocated.

Also had some great news from a family I contacted via the Steps website (http://www.steps-charity.org.uk/).
They have a Spica Chair that may be suitable for Edward.  My husband took the call, so just need to call back and make an arrangement to go and see it.  If suitable, the chair will make it possible for Edward to sit up at a table to eat meals and do a bit of drawing, etc.  Otherwise it will be 6 weeks on a bean bag or cushions I think.

Back at St Anthony's Hospital tomorrow to meet with the surgeon.

Wednesday 7th April

Edward and his sister, Katie, have been at Grandma and Grandad's house today. A day in the office for me so a good opportunity to fax (amazed people still use these things!) invoices from the surgeon to the insurance company and print off my list of questions. We meet with the surgeon this Friday, so I've prepared a long list of questions, with spaces in between to allow room for answers.

The insurance company still haven't confirmed that they'll cover the cost of Edward's surgery in 3 weeks times, but I'm feeling (unusually) positive that this won't be a problem. They're simply waiting on a letter from the surgeon and, given that he hasn't sent it yet, it's not surprising that they haven't given us the go-ahead.

Three weeks today. I can't believe it's approaching that quickly. Poor Edward.