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.
5 comments:
Wow, this is all fabulous news May. The caring doctors in Singapore sure have a handle on things. It doesn't sound like there was a hint of discrimination or staff running around asking you for DNR orders. (or placing them in the chart anyway)
I know the BiPap was a concern for you and so now there is renewed hope.
Thanks for this wonderful update!
Barb
Annie's mom
Wow, I am so impressed with your doctors there. She looks like she is tolerating great. Praying all will continue and you can make your way home very soon after learning new techniques...
May,
I am happy to hear you are having a positive experience at the hospital. Your outlook and attitude is absolutely inspiring. I will keep Vera in my thoughts and prayers to return home soon.
Susan
Glad you got good doctors. I hope Vera will continue to grow stronger each day!
Glad to hear that Vera is getting better. ;-) Hang in there. It must be tough on your body now.
N the suctioning gets easier with time. I do it with no issues now as compared with when I just started. We give him flumosil too to help loosen the phelgm. It makes it watery so not so thick for suctioning. Ventolin is good too. It helps to open the air passage way. Mathias is on that too. Oh, where are you buying the suction catheter from? Its $1 at KK per piece. If you need let me know. I buy from another place in Kembangan for $0.50 per piece. We use ours for 2 days before we open a new one.
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