Frustrated would be a good word to describe how we are feeling today. Elizabeth had issues keeping her oxygen saturation up alot yeterday, last night and today. Her oxygen requirement on the ventilator went from 35/40% to now requiring 70-100% and the other pressures/settings have also had to be increased and she is still having problems keeping her saturations up, dropping into the 80s. Last night she was sound asleep and started alarming her saturation had dropped down to 80, it took a little bit to get her back to acceptable levels. Then the nurse and I tried adjusting the ventilator so it wouldnt be rubbing on her face and a piece of the ventilator tubing broke. The nurse had to give Elizabeth breaths with the bag until the respitory therapist could get it fixed. Needless to say it was a very stressful night! This morning I expressed my frustrations/concerns and annoyance with anyone who would listen (nurse/pulmonary dr/respirtory therpist/and picu dr). Apparently they were starting to have the same concerns and had already started discussing what to do next. We went down the list of things that have changed in the past few days that could have caused her oxygen requirement to go up. And it was decided that possibly the steriod wean could be causing her to have the issues (if you have been following Elizabeth from before, we have tried to wean her steroids twice and had these same issues with increased oxygen requrirements). So she will start a 3 day round of pulse (large dose) steroids, and then we will have to decide what would be best to continue her steroid treatment (oral daily doses like she has been on or monthly pulse doses via IV). They also wanted to do another Echo on her heart to see if her pulmnonary hypertension has worsened. At this point we are at loss. It seems that no matter what we decide she just doesnt seem to "get better'' we know and understand that it is going to take time to see if her lungs will grow, but at the same time she struggles daily just to breath. We know that the Doctors are just human and have to base their decisions on previous cases and trial/error, with her having such a rare case of a rare lung disease. But I get so upset becaue they suggest things and we go with it only to end up feeling like we have set her back more than we have helped her!
Hopefully we can get her back on track but again only time will tell, so as we "celebrate" (SARCASM INTENTED) our 30 day stay at Vanderbilt this trip (for a grand total 53 days out of 64 , not including the 7 day stay at Erlanger in between). We realize that our stay doesnt have an end in sight right now. But Elizabeth needs to be here so we will stay till she is ready.
No comments:
Post a Comment