Daniel's Hip Surgery

Daniel had his surgery on Wednesday, 23rd March.  What we thought would be a 3 hour surgery turned into a epic 9 hour surgery!  Daniel's hip was very fused and it turned out to be a very complicated procedure to regain motion.  The great news is though, that Dr Paley was able to regain motion to 90 degrees.

Daniel recovered well from the general anesthetic, but was kept in the paediatric intensive care unit (PICU) for a night because he had been asleep for so long.  He did not have any breathing problems this time which was a huge relief, especially since he had a cough before the surgery.  He also kept his epidural in this time which made a huge difference with his pain.  He was able to sleep really well through the night (until the 5am blood test wake up call!) because he was virtually pain free. 

Daniel's spirits were up and down during his hospital stay.  Sometimes he said I was his best friend.  Sometimes he said I was not his best friend anymore and was sent out of the hospital room. I spent quite a bit of time in the hallway! He did tell me once that he would buy me a toy because I was so brave.  Ummm...I think that would be you Danny!  He was also stubbornly independent and wouldn't let me or the nurses help him move to a more comfortable position. He would want to do it which must have been difficult with no feeling in your lower half and you have 5 cords attached to you (epidural, surgical drain, catheter, heart rate/oxygen monitor and IV)!

Daniel stayed in hospital for four nights.  I stayed with him and Shane stayed with Max back at the hotel.  I think Daddy and Max had some really good bonding time!  We got home yesterday and I crashed quite early missing dinner and sleeping in my clothes until the next morning!  I think the lack of sleep had caught up on me.

Daniel has a fixator with six pins, the same number as last time.  This one is a lot bigger though so clothing is more of an issue.  There is no hiding this one under clothes.  He has to have it on for 3 months.

The fixator has a hinge which allows him to move his hip joint.  There is a removable bar which he wears most of the time to keep his hip straight but we take it off when he does his exercises.  To prevent the hip from fusing again, Daniel has exercise by moving his hip from 0 to 90 degrees for 15 minutes at a time for at least 6 times a day, not an easy task when Daniel cries in pain and begs us to stop . We started therapy with Dr Paley's physical therapist today and we have therapy every day until we go back.  He will have to continue this when we get back to London.    The therapy is quite painful for Daniel at the moment and he will need to take a pain killer before therapy and also valium to help with muscle spasms.  He is also taking daily anti-inflammatory to prevent bone formation which would refuse his hip. 

In addition to the therapy, we also have daily pin site cleaning.  From our experiences last time, we know the pin site cleaning gets easier.  Our physical therapist has assured us that the physical therapy will get easier too.  It is so hard putting him through this and I question myself daily whether we are doing the right thing.  Daniel has been so angry this time which not in his nature at all. I try to focus on the outcome and just get through each day, believing that it will get better and that 3 months will fly by and become a distant memory.  We just hope that his hip does not refuse and all this is worth it.  It is hard staying strong everyday and sometimes it is too much and I have to go and have a bit of a cry.  Tough love is tough.

Thank you to everyone who sent us messages of support during Daniel's surgery. It can feel a bit lonely here away from our family and friends and those messages of support really help. Thank you!

Pre-op room before surgery

Where we wait while Daniel is in surgery.
We are the only ones left
Everyone else is long gone and the
air-conditioning has been turned off.

Daniel in PICU

On the Children's ward with
an ice-cream to cheer him up.

First trip out of the hospital bed
to the Children's ward playroom

Superhip T-shirt (thanks Tredwell family!).
Now covered in blood, food and spat out medicine.
Not sure it will recover!

We need move the bottom bar from
0 to 90 degrees. It is almost there in
this picture.

 Not to forget our little Max who kept us laughing
and made sure the shopping was done!

Posted by Kristen (Daniel's Mum)

Funding granted. Surgery date booked. Florida, here we come again!

We found out on Friday that the NHS has agreed to fund Daniel's surgery with Dr Paley in the USA.  This is great news as it means that Daniel will have his surgery with the best in the world.  Not so great that he has to have another surgery, but we have to take the positive!

A gap in Dr Paley's busy schedule has just come up so we are off to Florida on Monday 21st March with pre-operative appointments on the 22nd and surgery on the 23rd. So its been a rush on booking flights, accommodation, car hire, and time off work for Shane.

We've told Daniel that we are going to Florida again and he is really excited. With his last two trips, the surgery has been relatively minor so he has pretty good memories of our trips.  We have told him that we are going to see Dr Paley to see if he can fix his hip so he can sit up properly.  Daniel seems pretty happy with this idea but doesn't really understand what this involves yet.  We also haven't told him about the dreaded fixator yet. We will tell him a bit closer to when we leave.  He is a pretty positive kid and he will probably take it in his stride like so many kids facing surgery amazingly do.

Speaking of amazing kids, Ginette and Michael McKenzie who have helped us through our PFFD journey so far appeared on a UK morning TV show talking about Michael's journey with PFFD.  Michael had his earlier surgeries with Dr Paley in the USA and they are hoping to return there to have hip and knee surgery.



It has been a while since I posted a video of Daniel.  Here is a short video of him at lunch on the weekend.

Posted by Kristen (Daniel's Mum)
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