2 April 2005

Tough news – part two.

I was staring at the pox (pulse oxymeter) that’s connected to Abbe. It measures the level of oxygen-saturation in his blood and the reading hovers around the alarm level. Every now and again it beeps. By now I know how to cancel the alert and I do so again. As long as it goes up again, as it usually does, there's no need to alert the staff. Then they’ll just have to cancel the alert instead.

There was a knock on the door and one of the doctors on entered. “Hi, just you and Abbe here today?” she said. “Yes, my wife is at home with Abbe’s brother, she’ll be along later”, I explained. “Right, I wanted a word with you. Is that OK? Even if your wife’s not here?” she asked. I supposed it was.

– Do you remember the test we did on Abbe, when you first came here?
– Mhm.
– Yes eh, the chromosome test.
– Mhm.
– Well, we have the results from it now and it shows that Abbe has a chromosome deficiency.
– What?
– It goes under the name of CATCH22 or DiGeorge. Or 22q11-deletion syndrome.
– 22q…what?

I wanted to shout at the top of my voice “Take your f-ing shit syndrome and go to hell! Abbe’s got a heart condition and something wrong with his hips and that’s already more than enough!” I wanted to stand up, leave the room and kick at anything and everything that got in my way.
Instead I mumbled, in a thin voice:

-Mhm…but…what does it mean?
-Well, hm, he might have learning difficulties. Some have a lowered immune-defence and some…eh..do you know what?
-There’s a doctor in this hospital that specialises on this particular diagnosis. I could ask her to call on you this afternoon, when your wife is here too. She’ll be able to answer all your questions. All right?
-Yes…all right.

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