Tuesday, March 22, 2011 6:44 PM

Well Elizabeth again reminded us we can never get too comfortable with her status or improvements. She again has some sort of infection brewing. When I woke up early this morning her heart rate was up while she was sleeping, I felt there may be something going. When PT came in this morning around 9 and sat her up, she got very upset, started crying, her heart rate went up and she started to desat. Her saturation only dropped to high 80s but it was still a "sign". I left the hospital to shower and go to the grocery store. Matt called me saying she was desatting again, and was not calming down. And to get back to the hospital. When I got here all the Drs, transplant team, nurse, and RT were in the room. Elizabeth had gotten 3 extra doses of sedation. Her saturation had dropped into the 70s and her heart rate had been between 190-over 200, her oxygen had been turned up to 80-100%. They were not sure what was causing her to problems, her lungs looked the same on xray, so we assumed it was infection. She looked so pitiful working so hard to breath. Her body was cold, and she was shivering.  Then she finally spiked a temperature of 101.4, and cultures (trach, urine, blood) have been sent off. She was started on antibiotics again and given tylenol to help with the temp. She is FINALLY resting some but her heart rate is still in the 170s, and she is on 60% oxygen (she has been on 45%). And her temp is only down to 100.6. As we have said in the past, infection can cause her to be removed from the transplant list. Prayers are needed now, that this infection is minor, and will respond quickly to the anitibotics. Also that her lungs and heart do not become overworked dealing with this infection!  Today seems to be rough day for a few other kids waiting for transplant, or evaluation. Please keep all of these children in your thoughts and prayers. 
Like I said before, today is just a reminder to us that we can not be overly exicted about the progress she has made, and take for granted what can happen. Today just reinforces the fact that she needs new lungs. I worry constantly that she may not get them in time. But I hope and pray she does.