First off-Autumn did great all day yesterday no oxygen with 100 saturation all day and needed a little oxygen all night. Her head went down more but she still has me confused.
So, Autumn has different kinds of apnea episodes. The most frequent are the ones where she got into the 80's or 70's and comes right back up (sometimes a little more slowly). She has these quiet frequently during the day and night and there is nothing we have to do about them but silence the alarm until she goes back up (within seconds). Since she has been home she has been having these episodes where she goes down anywhere between 20-70 and turns a dusky gray color and her lips turns a blueish tint. During those episodes we turn on or up the oxygen and stimulate her by rubbing her chest and she will come back up usually within a minute or less. During these episodes she really does not look like she is in respiratory distress because she is still taking breaths and looking around (besides turning a grayish color). I always stay calm with these episdoes but I am wondering why they have become more frequent this past week. Maybe it is because we only have her on oxygen when she needs it and we turn it off as soon as she sits at 100 saturation because we don't want her getting more oxygen than she needs but at the hospital she was on it a lot more. Well, then there are the episodes like she did this morning that really gets my heart pumping and on the border line of panic. I gave her a bath and she was doing just great. After her bath and I got her all dressed I was getting my supplies ready to do trach care while she was laying in her bed looking at herself in the mirror. Well, I move her to the floor for trach care since her mattress is so low it is hard for me to do it by myself in her bed since I have to use my teeth to pull the ties off since I only have 2 hands. :) Anyways, as soon as I got her on the floor I noticed she was getting blueish so just as I looked at her monitor to see if her stats were falling she was going down quickly. I turned on the O2 as high as it would go then grabbed her up to prop her body up and stimulate her. This was not working and she was big eyed and looking like she was struggling to take a breath and trying to get something out like a cry or a breath. So, I quickly laid her on her baby bed to grab the ambu bag to bag her but then she started turning pink again and coming up. When I was reaching for the bag I was thinking okay do I just grab the bag and start giving breaths or do I scream really loud for James to wake up (that was my borderline of panicing). Anyways, she started turning pink so I did not scream and instead I suctioned her to make sure she did not have a plug in her trach. I hate to suction first since when she is suctioned she goes down even more but if there is a plug suctioning is the only thing that will help her to breath again. This time there was no plug and suctioning did not get much of anything. After her stats came up I waited a few minutes and then did trach care and she did just great. Since then she has been on 0.5 liters of oxygen and is sleeping peacefully. It is kind of crazy to have such a scary moment and then a few minutes later going about business like nothing ever happened. I know if it was one of the other kids I would be a wreck the rest of the day but knowing how Autumn is I guess I am use to always being on my toes. I guess that is why I am just so much more tired during the day since I always have to be thinking and making decisions about when she needs more O2, when to suction, and all the other million things going on with her. She is completely worth it all though!!!
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