Goodness I do not like leaving our little girl! I wish I could just get a perfect, big, comfy chair to prop myself right next to her bed, hold her hand and position her pacifier in her mouth all day and night. (But all the beeps and alarms would surely drive me crazy...wait...they already have.) Anyhoo, on a good note, Isabella had her eyes very wide open tonight, gave me a slight smile and just mellowed out as Mommy held her paci in her mouth for close to an hour in total.
Unfortunately Bella is still on (what we consider) high oxygen requirements. I know some of you are probably saying...phewy, 48% oxygen, that's nothin'! But for a girl who spent most of her time on high 20 settings on the ventilator, it is hard for Mommy and Daddy to see. Her x-ray from this morning was hazy and wet, so they gave her a dose of lasix to help remove the fluid (she had a very large urine output this evening). When I arrived to her bedside, after waiting in the lobby for 30 minutes for a fire drill, her oxygen % was up to 86 and she was desating...I about freaked!!! The RT Stacey introduced herself and immediately tended to Bella. She discovered that Bella's mask was not sealed properly and collapsing her left nostril not letting any air get in that passage. Instantly her sats shot up and oxygen % lowered to 50. What I have observed over the last two days is that the head gear and mask are extremely irritating to her. Bella constantly swings at them and ocassionally pushes the mask. In addition, the head gear is a little too big for her head and has a tiny amount of slack at the top. The down side is that the size down in the head gear squishes her head. Yet another downside is that her cute little nose is so small that she can only wear the mask and not the prongs that they are supposed to rotate with to minimize nose and skin damage. After seeing her oxygen so high and not seeing any changes from earlier in the day, I asked to talk with the nurse practitioner Helena. Here is what I found out:
They did another x-ray while I was pumping. The x-ray was also wet and hazy, so they plan to give her more lasix tonight to help with that. There is a type of argyle prong they are going to attempt to use that would get the mask off her face. They plan to use lung recruitment (the bag) during her cares where they have to take the CPAP off. She had a CBC run this morning in labs; they are going to check that one at the 12 hour mark and draw another. This is RSV and Flu season so they don't want to completely rule the possibility of either of these out. Bella's blood gases have not been very good the last two days. This test lets them know if she is getting the right amount of oxygen on a consistent basis into her system. If these continue to be weak, they would most likely put her back on the ventilator. Cherish did not have a good day, so they were tending to her most of the time I was there and didn't get the blood gas drawn while I was around. If the blood gas comes back decent, they are most likely going to try her on regular CPAP instead of the biphasic. Now the regular CPAP doesn't give the extra pressure/breaths that the biphasic does, but it does compensate for any air loss due to a loose mask. They would only test the regular CPAP machine for an hour or so to see if it is even beneficial for Bella. So if you cannot tell from my rambling, everything with her breathing right now is kind of trial and error. And as Helena said, they will not underreact in any way so they are monitoring her closely. The instant she starts to show strong signs of deterioration again, they will re-intubate her and probably keep her on the ventilator for another week.
I want to share a couple of scriptures that have been passed to us:
Psalm 46:11"Be Still And Know That I am God."
Ephesians 3:20 "The will of God will never take you where the Grace of God will not protect you."
Always trust in Him, for He will guide the way!
And without fail...PICTURES!!!