Tuesday, February 24, 2009

The Meeting

The nurse called us into the meeting with the "team" caring for Josh around 2.30pm. Whenever I get nervous, I get sweaty armpits, and feel cold and shiver. Gross, but not as bad as it sounds! John and I were almost giggling with nerves on the way to the meeting room.

There were around 12 people there - Neurologist, nurses, Palliative Care and other Doctors.

Ah! Doctors! Such doom and gloom! Well, sort of. I mean, its better than them giving us false hope, but they don't like to paint a pretty picture either. I get it! I get it! They advise us based on past experiences and the information on hand.

They reiterated that his outlook does not look promising. The problem we have with anything they say is that no one is 100% certain. Or even, say, 60% certain of anything.

They think he wont walk, or even sit up. Its unlikely he will ever speak. Their gut-feeling is that he cant see or hear, although that may improve. No absolutes. And that's harder to deal with than anything. Not knowing. Uncertainty. How can John and I make such important decisions when they don't even know?

The Neuro is also concerned that Joshy's eye tend to roll back. He said that that was unusual. Josh has moments when he "looks" straight, but the Doctor thinks perhaps the part of his brain, at the back of the head, is damaged, and may not show up on then MRI.

They are certain that a chest infection is imminent. John and I cant decide what is best. John is thinking more about treating it, and subsequent infections, just with antibiotics, and hopefully see some movement or communication improvements along the way. The doctors advised that of course they could treat Josh with antibiotics for infections for the rest of his life, but 2 likely scenarios of this is that antibiotics aren't always enough, and that there will come a point in time where his body will be too weak to fight chest infections any longer, antibiotics or not.

We asked about moving Josh to a more brain-injury specific ward, and mentioned some treatments we'd read or heard about, such as hyperbaric oxygen therapy, or the drug Zolpidem. It was explained to us why these weren't suitable, and no other treatments could be recommended.

They have agreed to do another EEG and MRI and to compare them with the last ones done.

I absolutely now loathe the word "purposeful". I will never hear it again without remembering this time at the hospital. They all refer to anything Josh does, especially mobility-wise, as whether it is purposeful or not. Is he moving for a reason, like to scratch, or to touch my face? etc. Purposeful. Ick.

John certainly felt deflated afterwards, but its what we expected to hear really.

They almost all apologised for the confrontational atmosphere, but as with anything, the first time is always hardest. Another meeting is scheduled for 2 weeks, and getting together with them all wont be as bad. Importantly, I did not feel belittled or inferior, and felt confident knowing that whatever John and I decide will be supported by them.


Morag Joseph said...

To your dear family I am a friend of Liz's (Ashleigh's Mum) and Merita's (Paige's Mum).
When Ashleigh had her accident I spent the first few days with Liz in hospital and was part of their 1st meeting. Like yours it was so difficult to sit through and be told "possibilities" about a tiny child. As Liz's dear friend all I can say is never give up hope. I have watched Ashleigh learn to walk again, eat and laugh.I know Liz would be so very happy to come and visit you, you would have by now read her booklet . We will remember your family and especially darling Joshua in our prayers. Blessings Morag Joseph

Alex Tan said...

Thank you for sharing your story.

I can somewhat sympathize with the advice the doctors have given you - it's impossible to say things for certain in medicine.

My advice is to stop thinking about odds as 100% absolute certainty or not. You don't normally think in absolute terms in daily life and it is equally meaningless now.

Go with "most probably" or "99.9% certain".

It's harsh but if more than one doctor is 99.9% certain he will never talk (or walk or whatever) again, it's a 1000 to 1 odds of him achieving that.

Good luck and take care.

Copyright 2009 Joshua