Oh, how peaceful our Deeva looks while sleeping! Well, don't you get any ideas about that! I tell you, it's a charade. The minute she feels that you are about to leave her side, even if it is just to go fetch something to drink or eat, she will unleash her real not so peaceful self! Yes, Deeva is VERY demanding. If Mommy AND Daddy are not available at the same time, she makes sure to get the point across that she is not pleased. One beep, two beeps,... a whole orchestra... She demands her minions attention, and she demands it NOW!
Well, basically that is part of what happens. If Mommy and Daddy are taking care of her together, nothing of deep interest happens. But if one of them gets out of sight... Beware. Something wicked can and will come your way. most of the time we don't really think it is on purpose (hey, there is so much technology a baby girl can really command), but sometimes it all makes us go Hmmm...
After the Chicken Incident Day (yup, when we got readmitted to PICU and ended up having dinner looking at the lovely Newark city while enjoying BBQ almost squashed chicken), Saturday was a bit more quiet. Daddy got a visit from the Circle of Life (ironically Deedee was watching Lion King, no pun intended). They may be able to lend a hand, fingers crossed on that one. Besides that, nothing else besides Deedee sleeping a lot. She's getting her respiratory treatment every 4 hours, but her lungs are clear. Main problem seems to be the higher airways, and phlegm building up around the apices and up. Sticky gooey phlegm that is hard to get out and that makes her plunge to the 70s when you least expect it.
That is the basic big bad problem: the sudden drops that have no apparent reason. No beeping can go dismissed or unattended as any beeping can mean a desat that came out of the blue. Most of the time suctioning doesn't do the trick right away. We are making good use of the trendelenburg positioning of the hospital bed, along with percussion by the clock. That seems to work better than the cough-a-lator for these specific cases as secretions are up, in big need of getting loose.
Sunday morning X-ray was a bit delayed, but done... and the X-ray looks clear. Like that is some news... During the morning 3 desats, the afternoon had 1. And the night had 1. Where they come from, why... The world may never know. But as long as that keeps on happening, we are not getting off PICU... And that is the most frustrating thing of all.
You stay in a hospital for a week, and it is ok... By now, the monthly stays are really taxing, draining, frustrating... How to get life back in track? Deedee was making so much progress, but now this month stay lands us back in the gotta start up the exercises, physical therapy, speech therapy, cognitive therapy... Ugh! Not much you can achieve in a hospital, where poor baby cannot get the rest she needs and so is weaker than usual. At least she takes solace in her movies and series... Today she was making sounds and smirking while watching Little Mermaid... That always makes her happy.
We really hope that Deedee can come home soon, this next week. We hope that an answer comes along, so she can be safe, and back on track with her much needed daily routine.
Keep prayers coming. Mommy and Daddy need rest and energy to go on. We know what we have to do, and we do it... But we do need a moment to actually breathe. May God grant us peace, happiness and ongoing togetherness. May Deedee heal soon, so we can all be together, in our home. May miracles keep happening into our lives, and the lives of everyone who needs them.
10-4
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