Laughing, Weeping, Living

Life happens. You laugh about it or cry about it, sometimes both.

CPAP Plus Pressure Support

on October 21, 2013

Agnes totally owned the switch to CPAP plus Pressure Support. There really wasn’t much difference for her compared to the previous setting, since she was breathing a lot on her own already. The big change is now the ventilator is not supplying even 5 breaths per minute for Agnes; she has ask for every breath she takes. The machine still supplies the base pressure (the CPAP part), and when Agnes takes a breath, the machine pressure increases a bit to support the breath (the pressure support part). There is a back up ready, if Agnes stops breathing for 20 seconds, the machine will give a few breaths. So far this has not happened, except Agnes can trigger this back up response by holding her breath in a fit of pique–which she did do today, just not for a full 20 seconds.

There were a couple good trials for Agnes after the switch, too. They did an echocardiogram which didn’t appear to be upsetting for Agnes, just long. She was awake for the whole thing, but as far as I could tell she was not agitated. They also “pricked” her heel for a blood gas test. They call it a “prick” but really it’s a strong jab followed by at least 7 to 10 minutes of squeezing, prodding, and poking with a thin little needlelike collection tube. As far as I could tell, Agnes was extremely agitated and she hated this whole experience. Her ire did cause the monitor to alarm because it looked like she was dying, but when she kicks a lot the sensor doesn’t pick up well, so I’m not sure how close to dying she actually got. I do know that she recovered from the blood draw very quickly after the lab person left. So, all in all, a good trial for the CPAP/pressure support.

I think the next step will be to take away the pressure support and leave plain old CPAP. Then take that away, and Agnes will be on her own! I’m pretty excited! I think Agnes will be able to come off the machine entirely, but it’s a big change to take away the pressure support, and another big change to take away the CPAP. It’s possible Agnes will not respond as readily as she has been; the next couple changes are much more dramatic than what we have been weaning. Here’s hoping!

No word on the echocardiogram yet, but hopefully tomorrow we will know whether they plan to treat Agnes’ pulmonary hypertension with medicine or not.

Agnes also had a blood draw this afternoon to send away for a genetic microarray test. This test will tell us which genes are involved in Agnes’ special extra chromosome material. That may give us clues about her future. This test takes a while: at least a few weeks and possibly longer. Our nurse told us she knew of one kid who submitted blood samples and had tests done for a year before they got answers. I don’t think the results of the test will make a huge difference in Agnes’ day-to-day care, so any information we can learn will be just for knowledge and insight.

So that’s what’s going on. If Agnes can manage to stick without the ventilator, we should be home in two weeks or so. That would be nice!

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2 responses to “CPAP Plus Pressure Support

  1. JeneaSwainston says:

    Sounds like some good progress to me! I sleep with a CPAP all the time, even napping now, as it feels like I can’t breath without it when I try to go to sleep. I know that is different from what Agnes has and her needs for it but…well, I guess it makes me feel a little connected! Prayers for things to continue going well.
    I made about 60.00 at the sale on Saturday that will go into Agnes’ fund for a van as soon as I get the $$ in hand! Then when I get paid for the quilt I am making for a customer I will donate the profit of that to the van fund also…It should be $200 to 300!

  2. Awww, Agnes is so little and she already has to go through so much!!! I love your attitude about all of this…I’m sure even little Agnes can feel your hope and positivity! Keep trusting God and I know that everything will turn out just the way it was meant to be for your family!

    God Bless!

    Agnes

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