Pulse Ox Induced Exhaustion

Finally! We finally had three nights where Evie only set her pulse ox off a couple of times instead of the 20+ times a night of the last 2 weeks. Ex.Haus.Ted.

A pulse oximeter monitors Evie’s heart rate and blood oxygen level.  It lets us know if her heart rate gets too low or too high or if her oxygen levels dip too low.

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The thing about the pulse ox alarm is that it’s not like hearing your baby cry.  Babies have different cries for different needs. Hunger cry. Hurt cry. Sick cry. Tired cry. I’m just being whiny cry. Etc.  If you hear your baby cry anything other than the hurt cry, you don’t need to bolt up and run to them.

The pulse ox has one alarm. One single sound to tell us that Evie’s heart rate is too low, too high, her oxygen levels are too low, or the dumb thing just lost the signal.

It’s like hearing your baby’s hurt cry all.night.long. Every time it alarms, we have to assume that our child is in mortal danger.  We have to get 100% awake and assess the situation every time.

Every.

Single.

Time.

Sometimes she needs suctioning. Sometimes her heart rate has dropped too low while she’s sleeping hard. Sometimes the cord just got yanked and lost the signal. Sometimes the strap around her toe needs to be changed out. Sometimes her humidity mask isn’t on right and she’s gotten too dry.

And then after that huge adrenalin rush, we have to try to go back to sleep.

So for the last 2 weeks, Evie kept dropping her oxygen saturation into the 80s and sometimes the 70s (she’s usually 97-100%). We’re not real clear what was going on. Sickness? Teething? Change in weather? At this point, I’m just glad we’ve moved past it.

She’s doing much better, her secretions have settled down, and she’s keeping her food down again. She’s even started gaining back the weight.  At her peak in January she was 19 pounds 4 ounces and with two rounds of sickness close together, she got down to 18 pounds 2.5 ounces.  She’s put on a couple ounces in the last few days and hopefully we can get her back to full feeds in the next few days to get that weight all back quickly.

Hopefully we can all stay healthy now and just get through the rest of winter. We’d appreciate your prayers for that to happen.

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4 thoughts on “Pulse Ox Induced Exhaustion

  1. Hi! Sending our prayers your way, this time last year I was up night after night with our boys oxygen dropping to the 80s too- that state of constant alert is soooo exhausting. This year a special diet helped Josh and for him that has meant only one asthma crises. Will pray you find what will help Evie with this xxx

  2. Sooo glad you are finally getting a few nights of minimal alarms! I’ll be thinking positive thoughts that Evie is over this and starts gaining her weight back. We’ve been at a bit of a standstill the last month or so. Our dietician recommended trying fewer supplemented calories to see if Ronan would adjust. He’s just starting to now, so hopefully we will be back on the gaining path too!

  3. Oh how scary, frustrating and exhausting all in one! I’m so glad she has finally started doing better and I hope this continues and she can have a healthier stretch now and put some weight back on. I understand those interminable illness, weight gaining struggles.

  4. Hang in there. My daughter with Down Syndrome had many of the same bionic parts and alarms kept waking us up too. We got to the point where my husband and I didn’t get proper REM sleep. Make sure you take care of yourself too.

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