20 January 2010

Lots to Learn

Day 8 Update:

Vera has been out of PICU for 2 days now. In that short span of time, lots has happened.

1) We've met and spoken to the team of doctors - from neurology, respiratory, GI - who will be looking after her. They are a passionate, driven bunch and we were able to get some clear direction of how we will move forward with Vera's care.

2) We've had her promptly initiated onto Bipap. After all the hoo haa at home getting a mask on her, this girl surprises us by pliantly accepting it with hardly a struggle ("is it the hospital air?") The mask she's wearing was first recommended to us by Danielle's mummy. Not knowing if Vera will accept it, we actually didn't dare buy it a few months back, in case it was money down the drain again. Now at least we know it is a good fit for her.

3) We've had physio teach us how to position her for drainage of secretions, how to do chest percussions, and we're learning how to suction her (major mental hurdle here! memories of tube insertion days!)

4) We now know how to administer Ventolin, a medication to open up her the airway, via a chamber.

Perhaps this hospital stay was a blessing in disguise.

It has moved us out of the impasse situation with the mask. Now we know that oxygen isn't really the solution for her, as her issue is one of ventilation and not oxygenation. We also know that blowby oxygen isn't making much of a difference (and we've just bought the oxygen concentrator...)

Fingers crossed, Vera will really get used to mask wearing before discharge. Then we can all breathe easier when we get home.