ECMO Day 5- Miss Sensitive

SugarBear helping to keep Elli quiet

What a tough day for mom, dad and Elli. I called during the night last night to check on her and the night nurses said she was doing fine, but when Brian and his mother got there, things were not going as planned. Elli was continuing to have blood pressure issues, this time worse than ever before. Brian said at one point her blood pressure was in the 20's and her pulse had dipped into the 80's. This crazy phenomenon happens when they switch out the lines, usually at 4:00 when they in theory "hang new bags of meds" but since she is so tiny, they are in syringes instead. Elli continued her crazy ups and downs with her blood pressure for most of the day, and when it was time to change the lines at 4:00, her blood pressure stayed low for almost an hour, and when the Dopamine finally kicked in, her blood pressure went up into the 80's and her pulse was over 140! The day nurse Tiffany was trying to keep her cool, but both Brian and I could see she was silently freaking out. I kept thinking she was going to call the doctors in, but never did considering they had been at Elli's bedside 5 or 6 times prior to this episode trying to figure out what all was going on. Elli finally did settle down, the nurses just think she is extra sensitive to the Dopamine and considering all the lines had to be changed, she goes without the Dopamine for a few minutes and in theory once it gets back through the lines she gets a big bolus, which shocks her little system.

Only to add to the drama, we had been noticing a puffy area near the ECMO cannula's on Elli's neck, and this morning when I walked in I noticed it was much bigger, as did the nurse. They called in the doctors and surgery team to evaluate it to make sure that her cannula's were not bleeding or leaking (if they were that could be a reason for the low blood pressures). They did an ultrasound around noon, but didn't see any active blood or fluid movement through the area, so hopefully it is just a little pool of blood under the skin from Elli moving so much. The doctors and surgery team decided that it was not a major concern and that they would just mark the site to determine if it was growing or not, and to sedate Elli more so she would not be moving around as much causing further irritation to the area. Needless to say, Elli had plans of her own, and decided that she wanted to be awake. The nurses tried to hold her arms and legs down and gave her PRN doses of Morphine and Versed but it still took almost 20 minutes before she finally settled down, and even then she was still fighting to try and keep her eyes open.

As for mommy and daddy, it was a long day of worrying about her blood pressures, the reasons for the crazy fluctuations and the worry that something might be wrong with the ECMO cannula's, considering they are Elli's life line. To add to we had many visitors (which we appreciate people coming and showing support) but with all that was going on, it was overwhelming, especially for me and I got a little emotional. Thankfully my best friend Darci came to visit and sat with me for a couple hours, let me vent, cried with me, and most of all was just there for me. It has been such a long day, hopefully tonight Elli will behave herself and stay quiet, if not the doctors will turn up her Morphine and Versed drips to make sure that she is still. So as of right now, we are just trying to keep Elli as comfortable and quiet as possible. It is so hard because I want to talk to her, but just the sound of Brian and my voice talking to each other makes her open her eyes and try to look around to find us, so it is really hard. We have been just sitting in the NICU looking at her, trying to say as little as possible.

Thanks for the continue support, thoughts, prayers and comments. It is helping us to get through each day! Lots of Love ~ Brian, Cassi and Elli