July 18 Long (but good) Update

July 18 Long (but good) Update
The cutest little Monster you know!
  • Olivia is now spending 12 hours off the vent on trach mist or the HME (Heat Moisture Exchanger)! She loves not being on the vent, and we love it too. She’s so much easier to maneuver!
  • During the time she is off the vent, we have been able to place the speaking valve on her for up to 30 minutes. She has some adorable things to say – mostly she’s discovering her own voice.

⬇️ This is a video, hit play at the bottom ⬇️

I’ve never been so happy to hear a baby cry!
  • Olivia’s feeds are now being spaced out to every 4 hours, and her meds are being reconfigured to help limit how many times Max and Becky will need to get up in the middle of the night.
  • Becky and Max completed their 48-hour in-house stays last week and over the weekend. Their resounding conclusions are that caring for a child as medically complex as Olivia is not a one-person job. Overnight, they had to get up about every 90 minutes for feeds, medications, or alarms. While utterly exhausted, they both passed and have officially been signed off on everything!
  • Becky went to the simulation lab in the Fran and went through three emergency scenarios on an extremely creepy but medically useful mannequin. She learned a few new tricks, and now feels a bit more comfortable should any of those emergency situations arise. Max will be doing this tomorrow.
  • Olivia got to see some family this weekend, including meeting her cousin for the first time! It was awesome to see.
I can’t be snarky, I just love them all!
  • Due to her frequency of vomiting, Olivia saw a GI doctor on Friday who scheduled an ultrasound and upper GI fluoroscopy at Children’s this week. This meant that Becky learned how to pack up all of Olivia’s equipment on Monday in preparation for the ambulance transport team that took her to Children’s. She/Max will do it again on Wednesday when she has to go back for the fluoroscopy. It takes quite a while to be fully packed!
  • It took almost seven months, but Becky finally pushed her baby in a stroller for the first time. She was able to push Olivia around the floor for a lap, and cried afterwards (good tears). If it wasn’t clear before…these little things mean the world.
But my bed has always had wheels?!?
  • Olivia did her car seat test today, and passed!
  • Becky and Max are in dire need of home nursing. If you know anyone who does home nursing, please send them our way! Check out our advertisement HERE.

1 Comment

  1. Aunt Donna

    So, so happy for all of you.

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