Tuesday update

Autumn had a good night and a pretty good day. She only desatted once last night to the 60's which is not bad for Autumn. Today she went down to the 80's about 3-4 times. I was able to hold her again today and she did desat to the 40's while I was holding her which gave me a little scare. She started to get dusky color and the nurse was out of the room so I yelled at the respiratory tech as she was walking by for help. They are pretty use to hearing Autumn's alarm going off and knows she usually comes back on her own so they don't always rush to her room but she just turned her oxygen up a little and she came back up without having to be bagged. They took out her PICC line today because they were concerned about infections. Other than that is was a pretty quiet day.

Yesterday physical therapy came in and showed me how to do her feet and leg therapy so now I can work with her each day. I also learned that the bottom of your feet are controlled by different nerves than the top or even sides of your feet. They also said just because she may have sensation that does not mean that her muscles will work and then it can get even more complicated about the strength of the muscles. She has sensation on the tops of her feet but not the bottom--she said until she gets older and starts trying to use her legs and feet we will not know the extent of the damage. Also, the club feet look different everyday so that is why they have not put splints on her since somedays they don't look clubbed and other days they do turn in more and look clubbed. She will need therapy at least 2-3 times a week while she is a baby and then it will increase as she gets older.

I also learned today that spina bifida kids have a hard time with temp. control. Anytime they swaddle Autumn she gets pretty warm so they have to really watch to make sure they keep her temp normal. They said if she ever runs a 100.5 we really have to watch and see if it goes down and if not then we would need to call the doctor. Autumn is teaching us a lot about the medical issues and I know this is just the beginning.