Around lunch time today, we were all hanging out in the living room together. Kaitlyn was laying on her side watching a video when I noticed her face was turning blue. We quickly grabbed the pulse/ox and suction machine to try and clear her airway. Her oxygen concentration was 64% when it was first on. Normal is above 93%. We immediately put her on oxygen, which we had available at home thank goodness!
She quickly returned to normal range. She wasn't in any distress and didn't have any other signs or symptoms, she just started going blue. We turned down the oxygen and she fell back down in the 70s a second time so back up it went. We called and had one of the hospice nurses come check her out. Her lungs sounded clear and everything was stable.
We had her on oxygen for a few hours and slowly turned it down. She was back to normal on her own by late afternoon. She is now asleep in her bed with the pulse/ox on so it will alarm if it dips below normal. We also have everything ready in her room should we need it tonight.
We aren't sure exactly what happened. It could be that she had too much saliva in her mouth and couldn't swallow or it could be that her brain wasn't telling her body to breathe. With NP, we know that at some point she will be on oxygen 24hrs a day and may also have seizures. Although we knew this, it is terrifying to watch your child turn blue.
After her hospital stay in April for a simple virus, we were adamant about having the equipment we need in place for Kaitlyn at home. I am SO glad we did.
Please keep Kaitlyn in your prayers. Hopefully she will get a good night's rest tonight.
She quickly returned to normal range. She wasn't in any distress and didn't have any other signs or symptoms, she just started going blue. We turned down the oxygen and she fell back down in the 70s a second time so back up it went. We called and had one of the hospice nurses come check her out. Her lungs sounded clear and everything was stable.
We had her on oxygen for a few hours and slowly turned it down. She was back to normal on her own by late afternoon. She is now asleep in her bed with the pulse/ox on so it will alarm if it dips below normal. We also have everything ready in her room should we need it tonight.
We aren't sure exactly what happened. It could be that she had too much saliva in her mouth and couldn't swallow or it could be that her brain wasn't telling her body to breathe. With NP, we know that at some point she will be on oxygen 24hrs a day and may also have seizures. Although we knew this, it is terrifying to watch your child turn blue.
After her hospital stay in April for a simple virus, we were adamant about having the equipment we need in place for Kaitlyn at home. I am SO glad we did.
Please keep Kaitlyn in your prayers. Hopefully she will get a good night's rest tonight.
The pulse ox was the best thing I ever asked for!!! I also had my little Anna's hospice nurse come and listen to her lungs weekly or even daily if I was concerned! She was the best! Keep fighting!!! We are all trying to spread awareness to find a cure!!! <3
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