Thursday, October 20, 2011

"Unresponsive"

Last week at South Davis was fantastic for the most part. I found myself frequently commenting to family about how well Norah was thriving there. She was playful, smiling, and her normal sweet self. Then she had a couple of rough nights on Saturday and Sunday. As a precaution, I spent the entire day with her on Monday. I spoke with her care team there, and we came up with a few different options to help make her more comfortable. I was ecstatic when she came around and played with me almost all day.

That night (technically Tuesday morning) at 2:00am, we received a phone call from the charge nurse stating that they were sending her back to the Pediatric ICU at Primary Children's. She had a major desat (her oxygen saturation went down & she turned blue) at midnight, then again at 12:30. Jeff and I were taking a few groggy moments to discuss the plan for going down there when the phone rang again. We were told, "When Norah left, she was unresponsive. You're going to want to leave now."

What is a parent supposed to think when they hear something like that? Visions of a future without our daughter ran through my mind, but I couldn't dwell on them. We immediately popped into "GO!" mode & Jeff helped me gather things so I could leave right away. That 45-minute drive was one of the longest in my life. She was admitted through the ER so she could get immediate medical attention. I beat her to the PICU, but she arrived there about 10 or so minutes after I did. When they wheeled her in, her eyes were open & she was looking around. I felt like I could finally breathe knowing that she was alert again. I was even more relieved when I was able to see that she didn't seem to have any lasting effects (ie brain damage) from the incident. She did have some lung collapse, but that seems to be her norm through these incidents. That girl is one tough cookie.

We still have a lot of questions about what happened, and what South Davis is going to do to regain our trust and address the gaps that caused the problem. I won't go into detail right now, but lets just say they made a lot of mistakes in responding to the incident. In fact, more went wrong than went right. We're so relieved that she's okay.

She had a fever that has since resolved itself. They think she maybe had (or has) a bug, so have been running tests to see if they can pinpoint it. Originally we thought she would only stay for a few days. But those plans have changed. She'll be there for a week or two while the PICU team monitors her and South Davis can get ready with the special ventilator that Norah definitely prefers. But who knows - there's a chance that Norah will stay at the PICU (this is her 5th stay, for those of you keeping track) until she can go home if it turns out that South Davis isn't the safest place for her. Time will tell. The doctors changed the settings on the ventilator to control the volume in her lungs as opposed to controlling the pressure of the air that goes into them. After weeks of trying to figure out what is causing the desat incidents, they're brilliantly thinking that this may help prevent them. So hopefully we'll finally be saying bye-bye to those blue baby blues.

How is she doing now? Well, she's great. She's happy, smiling, and her sleep is very restful. Her weight is still 3.8 kilos (8.36 lbs), but her length is up to a whopping 44 cm (17.6")! Once she's bigger, the plan is still to transition her to the home ventilator. Her pulmonologist is making sure she gets the coveted synagis shots to prevent RSV this winter. After RSV season, they'll look at possibly weaning her off the ventilator for when she's awake. They think she'll probably only need it while she's asleep to help her rest well and conserve calories that are eaten up by her work of breathing.

All in all, it was possibly the most frightening experience of my life - right up there when Jeff had his health scare almost five years ago. But the optimist in me feels good about our plan going forward. Of course, things often change... but I know we will make it through as a family.



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