Developmental Dysplasia cast change looming. #DDH

Five weeks in, it seems incredible how the time has come whizzing around for the first cast change.  Developmental Dysplasia has become one of the controlling features of our lives, it controls how we do things and what we can do. The nerves are really starting to kick in again and I feel physically sick at how Erin is going to be after the general this time.  It was so upsetting seeing her in such a distressed and confused state only five and half weeks ago, the thought of doing it again is heart wrenching. 

This time I’m facing it by myself too.  The husband is not coming to the hospital with me.  We need to be sensible, as a teacher he has no holiday he can book off and quite simply we can’t afford for him to be off work each and every time Erin is having a procedure.  Therefore my lovely mother in law is coming to stay but it will be me taking Erin into theatre and me going into recovery for her.  Last time was awful and I don’t know if it was a reaction to coming out of the general or being so scared that she couldn’t move her legs.  This time I’m hoping it’ll be different.

For many the cast change is a great place for marking the end of six weeks, for many this could be the half way or one third of the way down.  I don’t have that optimism yet.  The road is long and we have a long way to travel yet.  I am also dreading the CAT scan – what if the last six weeks have been in vain and no difference is spotted? No improvement to celebrate.

What I am hoping to find out from Erin’s consultant is what is going to happen at the end of the 18 weeks.  We have been told that the ‘big op’ will be when she is 21/2 – so that is May, the first 18 weeks is up at the end March.  I want to know whether coming out of spica at that point is fair on Erin, will it make going back in spica in May more difficult emotionally.  However he used that get out clause last time – a minimum of 18 weeks.  Therefore I am trying not to get fixated on numbers, especially as we will have another 18 weeks in Spica after the op,  that will take us till August.  I’m back at work in Sept so I really hope the timescales work.  I am concerned that the barrage of physio and learning to walk again will be difficult just as I am back at work.  Erin is going to be like a bambi on ice, hesitant and not very strong.

I am scared about the cast change, we have settled into a nice little routine and I’m worried that it will all come undone at the seems.  I hope the legs are in the same postition as I can change nappies quite easily.  Last time Erin resembled a human pin cushion and ended up with black and blue hands, arms and wrists as they obviously couldn’t find a good vein for the cannula.

Therefore think of us next week whilst Erin is sleeping and mummy is drinking copious amounts of hospital coffee.

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