Our Family

Our Family

Wednesday, 12 June 2013

A different view


A different view on the life of a special needs parent coming to grips with the new reality they face. A bit more stark than the Holland poem but probably a bit more realistic.

22 days.

Definitely not a short stay. Three weeks. The worst part being that on the last day the doctors ended up agreeing with me that its possible that 'normal' SATS and 'normal SATS for Robyn' are not the same thing.

They finally came to accept that SATS between 92 and 94% whilst sleeping are an acceptable limit for her. Which in reality means we could have been home two weeks ago. Frustrating. Our local hospital does not cater well for the parents of children who have long term stays in hospital. We get some of the most horrible looks and comments from some of the nurses about us leaving her sometimes. They never seem to remember that we had jobs, and another baby at home, and not many people who can afford time to come sit in the hospital while we take a break. They never grasp that its hard enough to walk out and leave her without being made to feel more guilty. They never think about how hard it is to leave my other baby at home to be in the hospital all day. Especially when he is crying in the car because he knows he wont see me till bedtime.

We fell out with a few of the nurses. They never consider what its like to be expected to hand over care of your child for WEEKS at a time. They want to hand out calpol for every tiny temp spike despite the fact that temp spikes for no reason are common in CHARGE. Then when I object I am told I am being unreasonable. But its not at all unreasonable to expect that I should have to go tell a nurse every time I change my babies nappy or feed her. One nurse in particular watched me get Robyn off to sleep on my lap as she sleeps better there then came over and physically tried to move her from me saying she really needs to sleep in the cot. WTF? erm no shes fine there thanks.

So glad its over. We do however have an appointment in the works to have a colour contrast test done. They now need to assess her to see if she 'needs' a button fitted. And also if she needs a Fundoplication operation carried out at the same time. (its a surgery to help reduce reflux where they make a small twist in her stomach tubes to cause like a little safety lip t prevent any reflux coming up out of her stomach).

The test needs to be done under GA, not thrilled about another dose but Its got to be done I guess. That will make 5 GA's in one year. Six if the operation goes ahead. That's an awful lot of Anaesthetic for one little girl