Wednesday, October 1, 2014

A Difficult Week

Those that didn't know me would have thought I was a mom going through a crisis for the first time. They probably would have felt pity for me -  a fearful mom in unexpected and new territory. It was partially true, but the deeper reality was that I was having some serious PTSD. I will however say that I received great comfort from family and friends, who helped me cope.

That first night post-op from Norah's c-spine fusion was awful (though her surgery itself went really well). She was in so much pain. She was able to sleep the next day, but in the middle of the second night, threw up and breathed a bit of it into her lungs. I can't tell you how many middle-of-the-night emergencies we've had with Norah. We moved to the PICU, which was when I started to feel the old nag of emotions bubbling up from living there so long. After some time in the PICU, we moved to the floor. But overnight, again, she began to decline all of a sudden. the respiratory therapist recommended a PICU consult. No. Not again. I didn't want it. "They'll take her. I know they will. I don't want them to come." Those were my exact words. But there was no stopping it from happening. She wasn't getting better, so I agreed to their consult. I was just relieved to see familiar faces come upstairs. It was becoming more and more clear that we were going to have to go back. The doctor who once told us three years ago that our daughter might die, was here to tell me that Norah needed to go back to that place. Back to that place that toes the line between being the most wonderful beautiful place and being the saddest, most horrible place. They wanted to put us in our old room, bed 14, but I asked them not to. I would have begged if necessary, but they had no problem finding another place for us.

Friday was awful. One of her most frequent and beloved caregivers there, a Nurse Practitioner, looked at her with the most genuine concern. I could tell he was worried. He looked at Norah as if she was his own child. I've never quite seen anyone look at her that way aside from Jeff. Sure, people love her, but this was different. It was so touching. He spoke with a somber but hopeful tone. We all had a hard time getting Norah stabilized on the vent. For a bit, I thought we were going to have to intubate her.

I saw something that I've only seen happen with her a few times during a code. No, she didn't code this time. But what I saw was a girl starting to give up. And it scared the shit out of me (no apology for language there). She and I had a talk. I tearfully told her that her mom was going to be selfish. That I couldn't stand it if she left. That I needed her to fight. She couldn't give up. Well, she didn't give up and I am so grateful. This last week+ has been one of the more difficult that we've had in a long time.

Based on her viral panel and presentation of symptoms, she was treated as having the nasty enterovirus d68. Don't worry - if you or your kids get it, it wouldn't likely do you you what it did to Norah - unless you also have airway issues and/or lung disease. It is because of these things that little colds can really do a number on her.

So we've come home with our old friend, the Trilogy ventilator. We're using it at night for non-invasive bipap. Norah was pretty upset when we put her on it last night. She thought that since we were home, that we were done with those shenanigans. The C-collar she has to wear (for four months) was also frustrating for her since she can't lie on her belly. Hopefully it just will take some time to acclimate to this new normal. Again. I'm just happy that we are all together again. I missed Jeff and Harper like crazy. And poor Jeff didn't exactly have an easy time trying to juggle between being supportive at home and the hospital.

As for Harper, the poor guy has been having a hard time. He told me yesterday that he had been sad because he thought that I wasn't going to come back. He was serious, too. We hadn't seen each other in person for over a week, so it was understandable. As much as we try to make things normal for him, it just isn't possible. So we' have some work to do with getting both kids to happy places. Hopefully it happens sooner than later.
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