Thursday, November 18, 2010

Thursday, November 18, 2010 12:29 PM, CST

Elizabeth again had issues when the flight team tried to move her to the strecher for transport last night and it took about an hour to get her stable, after having to paralyze her. The flight went well, her saturations stayed at 98-100 percent the whole time, THANKFULLY. Elizabeth and I got here around 130 am this morning and Matt got here at little after that since he drove up for Chattanooga. It was again a very rough night, as soon as we got to her room and they started moving her and trying to get her set up in the room her saturation dropped. Her legs/feet were starting to turn blue. I dont think the Dr/nurses here really realized how bad she was until we got here. It took a long time for her to recover from that episode but they were finally able to get all the blood work they wanted to send to check for infections or anything else. She had another major episode this morning around 4am, I woke up to see about 10 people in our room and they were bagging Elizabeth to help her breath. They had tried to do a catheter to get a urine sample and it upset her too much and her satruation dropped really low again. Throughout all of this they have been trying to keep her just sedated, but because she has been sedated so much in the past her body burns through the drugs. They had to increase the sedation alot and are now keeping her paralyzed all the time to make sure she is resting. Thankfully the Pulmonology Fellow here at Vanderbilt that has been with us since our first stay was on call, and came in when we got here. She stayed all morning in PICU and was here to ensure that the PICU Dr understood what Elizabeth needed and helped provide her with the most support possible. She was the one who took over bagging her breaths just to ensure it was done correctly! (We would LOVE for her to work in Chattanooga w/Dr Ledbetter after her fellowship!!!)
During the day yesterday and again last night Elizabeth had a couple of times where she started shaking, not sure if it was like a seizure or if it was something else. But we know that seizures are possible with her neuornal migration disorder. So neurology was consulted today and they are now putting an EEG on her to monitor her brain and check to see if she is having seizures or any abnormal brain patterns. They are putting it on now and it will stay on for 24 hours.
Some of the blood work came back last night and it showed her white blood cells were really elevated, so they have started 3 broad spectrum antibiotics to try an treat any infection she has. They are waiting for cultures and other testing to show what specficis infections she may have. Which we know for TC Thompson she has an infection from her trach and still has MRSA. They are concerned also about her liver it seems to be a bit enlarged which can be a sign of heart failure.
   The PLAN for now is to keep her very sedated/paralyzed and just chilled out so that she will remain stable. Since they adjusted her sedation medication she has done well and they have been able to wean her oxygen requirement from 100% down to 60% and hope to be able to wean the nitric oxide down more today. They plan to try to get her a bigger trach to get rid of the air leak that she has around it now, even with the cuffed trach they put in yesterday she still has a huge leak and it allows too much of the pressure to leak out instead of going into her lungs. Continue to treat her with antibiotics until a specific infection is determined but at this point treating any/all infections will benefit her. Infectious diease control has been by to try and determine if they can narrow down any infections she may have, but need all her cultures/blood back first. Cardiology will be coming by to do another echo on her heart to check her pulmonary hypertension and decide if something more needs to be done to treat it. Gastrology will also be by to check her digestive system, and decide if her feeding tube needs to be changed from a g tube to a gj tube (where the food goes into her intestines instead of her stomach). And surgery will be consulted to check why she has been able to throw up around the nissen she has on her stomach which is supposed to prevent her from throwing up/aspirating. She will not be fed until all of these things are checked, so she is getting TPN fluids to provide her nutrition.
     I want to thank EVERYONE for your continued thoughts, prayers, and words of support and encouragement for Elizabeth, Matt and I. Right now we have no idea what the future holds for Elizabeth and it is the scariest feeling ever, I hate that I can't help or take her place.
We also wanted to share how grateful we are for all of the PICU staff and Dr Ledbetter at Erlanger who did everything possible to help her and keep her stable so that we could get her to Vanderbilt. They were beyond awesome to Elizabeth and us, everytime we have been there. We are hopeful that things remain stable today and her condition improves more. We were told the next 48 hours are critical and that as always Elizabeth is going to teach us and the Doctors what she wants/needs. I hope she knows how loved she is and continues to stay strong. I will update as I get time and as things changes, its been a very rough few days and we are just trying to stay sane right now.

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