Greg and I went back to the hospital today at 10:00 am after shift change and stayed until 5:00 this afternoon. Basically with the exception of shift change last night from 6-8pm and shift change this morning from 6-10am, we have been there a full 24 hours. I can honestly say, we now know the beginnings of the NICU roller coaster. I am not sure whether to zip my shoes or lace up my pants, we are so tired!!
She did much better today SO FAR. Everything right now is day by day and sometimes hour by hour. She seems to be responding well to the steroids and stayed at a saturation level of 90 or above the majority of the day while only requiring oxygen levels of much less than 100%. She started to ween from the high oxygen levels this morning, first with 90% and went as low as 50% when we left at 5:00. She is still on the fentinal (I think) for pain and she is on the other medication that relaxes her to the point of no movement - I can't remember the name of it. From what we found out today, the steroids is going to be longer than what I expected. She will take doses of it every 6 hours for 7 days. Then they will ween the amount down and every 8 hours for 5 more days, ween the amount down again every 12 hours for 5 more days, and then ween it one last time once a day for 5 final days. (I THINK. - Don't quote me.) So, she is likely to be on the steroids for 22 days. Most of that time she will probably remain on both the fentinal and the other medication (name escapes me). The second medication basically "paralyzes" her temporarily so that she doesn't expend her oxygen.
While she is doing all of this, she will still continue her liquid nourishment - her hyperal and her lipids - and she will still continue her antibiotics too in order to fight infection should she have one. Remember, she is being checked for an infection right now that we should better know about by tomorrow of Thursday. As of now, the cultures have come back negative yesterday and today. They probably will wait a while to re-introduce the gut priming. Also, no news about any weight gain. With all of the occurrences the last few days, they have not been concerned with weighing her for right now.
She is still having good urine output. Chest xrays are still improving, but things are still day by day and hour by hour.
Greg and I plan to return to work tomorrow provided that things continue to be more positive. This is a really rough ride! Please pray for Kathryn.