A Few Steps Back

Monday, February 18, 2008

A Few Steps Back
Current mood: anxious
Category: Life

Well as you know I have this stupid rash and can't go see Carly. So I have to survive on phone calls. I just spoke with the NNP and they had to increase her streiods. For the past several days she's been desating and had an increase in oxygen needs. So they have given her the increaded dose of steriods to try to help her over this hump. They also turned her back up to 4 liters on her high flow canula. The last time she was on 3L she lasted about the same amount of time as she has now before getting too tired. They did a chest x-ray and both of her lungs stil look pretty bad from the chronic lung disease. Which I already knew about. They don't want to give her a diuretic because of her bone condition. They also said that her fontanelle is a little larger than it should be so they ordered some lab work to test her thyroid. It came back high ( I think) so they are gonna start a drug called synthroid. They ordered an ultrasound to check her thyroid glands. They suspect that she may have an extra gland. I really don't know what all this means. This was a lot for me to take in seeing as how I can be there with her. They said that her breathing has becomed distressed. So they put her in the prone position (on her tummy) and hopefully between that and the steriods and increasing her back to 4 liters on her high flow canula will make her breath easier and more comfortable. I jsut knew something wasn't right though because she's been having lots of desat episodes since Friday, which she doesn't usually have. So I hope all of this helps. It's really hard though not being able to hold her and comfort her. It seems as if someting always happens after doning so well for so long. This stupid rollercoaster ride is starting to get real old real fast. I'm gonna keep my chin up though and keep on keeping on. I know it only has to get better with time. I just don't wanna see my little girl have to suffer. I can already tell this is gonna be a pretty rough day for me. But Ryan and I are going to go on a date tonight which we haven't done in a VERY long time. So hopefully this will help some. We need some time together, though it seems hard to find the time lately. So I guess we'll take advantage of the time we have not being able to go to the hospital for a week. I'll post another update as soon as I can. Oh BTW for those of you who haven't received a weight update from me lately.....she's as of last night 3 pounds 1.2 ounces.