Thursday, August 18, 2011

Deep Breaths

Just before we were originally released from the hospital, it was found at the last minute that the carbon dioxide levels in Norah's blood were high. They had asked us to follow-up with a re-check during the next week. The results weren't good. A normal level would have been between 40-55. A critical high level would have been 69.9. Norah's draw on Tuesday showed 84.2. Yikes. After many phone calls, we were told to make an appointment with Pediatric Pulmonary Care at Primary Children's Hospital in Salt Lake. We were fortunately squeezed in for an appointment, but the evening didn't go as we expected. They retested her and she was still obscenely high. They wanted to admit her as quickly as possible, so they sent us through the emergency room so she could be placed on CPAP right away. It was difficult for Jeff and I to yet again see the frenzy of people working on her, but it was also reassuring that she was so well cared for.

Norah is continuing to respond well to the CPAP (Continuous Positive Airway Pressure). The equipment basically pushes/forces air into her lungs through her nose. Based on a chest xray that didn't look so great, they saw that she was suffering from atelectasis, or a partially collapsed lung. There could be quite a few reasons that this could have happened, though they're not completely sure what that reason may be. However, we suspect it was from possibly aspirating either her (super thick) oral secretions or milk into her lungs. One of the nurses said that it was indeed possible to have "micro-aspirations" that could eventually lead to atelectasis. The good news is that after being on the CPAP for just a short while, her CO2 had already gone down within the normal range, at 50. What a relief.

Jeff and I went home last night, knowing that she was not only totally comfortable, but also looked better than she ever has. She was the most blissful shade of pink. I spent this afternoon with her, and Jeff is now there for a couple hours. It absolutely breaks my heart not to be with her all the time, but we're trying hard to find a balance between being at her bedside and being present for Harper, who also really needs us right now. Though in some ways the variety in caregivers has been good for him, he's had a difficult time adjusting to all the changes around him. Not to mention that Saturday is his third birthday, and we want to make sure it's extra special for him during this difficult time for all of us. I'm bummed that Norah won't be there, but it's probably for the best considering we'll have lots of outside germs coming into the house in the form of our beloved party-going family members. :)

So yes, it is expected that our sweet girl will be in the hospital for several weeks at minimum. They're doing quite a few tests (including an ECHO today) to rule out any possible contributing factors to the challenges that her body is giving her. They'll slowly wean her from the CPAP but most likely when she eventually goes home, it will be on high-flow oxygen instead of the low-flow that she was originally sent home on. Though I already dearly miss the team of care at U of U, I can see that she's in amazing hands at Primary Children's Hospital. One of the respiratory therapists stayed past his shift last night just to stand in her cheering section as we waited for an updated blood gas result. He also stopped by this afternoon to say hello and see how she was. She sure knows how to capture the hearts of everyone she meets.

I'll let you all know how she progresses. Again, thanks for sending your love and kind words... they means so much to us.
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