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)