Sleepless in Milwaukee

Sunday, March 23, 2014
The Bottom Line Up Front is that Samantha is back in the hospital. The real reason I'm writing this post is a bit more lengthy to explain. Bear with me.

Sam has been getting a little sicker over the last several days, and finally Alicia and I decided that we needed to get her seen. Honestly, I just assumed the ER staff would do a breathing treatment, see her O2 saturation stats come back to the mid to upper 90s and send us on our way. That's what happened last year anyway.

I was wrong. While the saturation did come back up periodically, the hospital had no more luck getting her stable above 95% than we did at home. After consulting with the on-call doctor at Children's of Wisconsin, where Samantha is treated for her cystic fibrosis (CF), it was decided to transport her from Lake Forest, IL to Milwaukee, WI. Because of our schedules for the week, I chose to bring Sam up to Milwaukee and get her settled in for the night.

After getting her settled in, getting a breathing treatment out of the way, and finishing up her first antibiotic drip (Unasyn), Samantha and I were basically shot. Both of us curled up in our beds and fell fast asleep. This was around 11:00pm.

And then the infernal beeping! it started around 11:20pm. As she slept, her O2 saturation dipped under 90, coming to rest at around 87-88%: Way too low! In came the nurse to start an oxygen mask at 1 litre. That's the lowest dose I think they can do.

The next nurse on duty came in at about midnight to do her rounds. I don't like sleeping while someone pokes and prods my child, so I got up and observed. We talked about the overall situation and in particular, the fact that she was only at 91% saturation even with oxygen. This was still true at 1:15am. At some point, I assume they will increase the oxygen flow.

But that doesn't explain why I'm awake. Here we are, on the cusp of hospital stay #2, and I will be a (small) part of deciding if our daughter is admitted for a tuneup tomorrow, and I can't sleep. I need to sleep. I need to be alert tomorrow.

I keep going back to the fact that I thought she wasn't going to get admitted to the hospital. I still don't know that they had to admit her, but I can't deny the 91 that is screaming at me from the monitor. It's not crazy low...but it's not acceptable either.

Maybe it's the fact that we recently lost a good friend to CF, but I doubt it. Samantha is years away from being a life-or-death concern. Maybe it's the fact that I have other issues going on in my life, like my continual recovery from wrist surgery, or the fact that this was supposed to be spring break. Maybe it was just because I got a nap and now I'm awake. Maybe all of those are part of the reason.

Yet the biggest issue is that we were supposed to be at home tonight, sleeping soundly in our own beds. This disease is a funny thing. One day you think you're on top of it and the next you're in an ambulance headed from the ER of one hospital to the CF ward of another. Stupid cystic fibrosis. It's the one problem I have that isn't just a first-world problem. This one is real.

As of this moment, the nurse doubled her oxygen flow and her body has responded. She's now at 95% saturation. This will do for now. PFTs in the morning. Time to try and get back to sleep.