The past 36hrs have been a whirlwind of emotions. Abbey went into surgery yesterday at 7:45am and came out around 5:45ish. I’m sure my timing is off slightly but right now that’s what I can remember. During the surgery Sam and I being the two very different people we are did very different things to pass our time. Sam stayed back at the hospital rested while he could do a few things with work, contacted COTA about assistance with transplant-related expenses since we had a little bit of some issues with our hotels coming up here and Ronald McDonald House having a room for us. While Sam didn’t free comfortable leaving to hospital I could not just stay here and worry about something I had 100% 0 control of so Ramia and I walked over to the Zoo for a few hours. We made sure to stop and see Fiona and Fritz, Rico, and all of the big cats. We took ALL the pictures of the animals to share with Abs when she wakes up. We came back, ate lunch, then went back up to our room and took naps. We had a few calls during our nap with updates on islet cells, reconstruction of the intestinal tract and then finally the call that her islet cells were being transplanted. They told us to start packing up our room so they could come talk to us and walk us over to the surgery consult room. After our consult we walked over to the waiting room of the PICU where they were moving Abs to, waiting for her to wake up and setting up what Sam calls her science poles. After what took ages we were finally allowed to see her at 7:30pm – nearly 12hrs after saying goodbye to her. The emotions we all had when we saw her were so intense and overwhelming. She looked right at us with a scared help me look that I will never forget. Wrapping our heads around everything we were seeing, all the nurses that were coming in and out, and all the activity that was buzzing around her room was scary and put us in a reality of just how critical and fragile her state was. We went to bed around 11pm after eating dinner and settling into our room for the next few days.

We are still struggling with pain control for our little hero as she is having pain spasms resulting in her breath holding and her oxygen falling. At one point last night we had all the nurses in our room working with Abbey just to get her to breathe because her pain was coming on so intensely. Our main goal for today was to get her sitting on her own but since she is so tiny we have altered her goal to just pain management and seeing if we can get her to be awake for longer periods of time. She is currently on 3 different sedatives/anxiety meds, 3 different pain meds, two spinal blocks, her antibiotics, and a few more things that I’m not going to get into. Around 11 this morning we had our first OT/PT visit where we talked about all of her history and what our therapies at home look like. Because of her age and how little she is, the first therapy plan was to get her sitting in moms lap for 30mins to get her body off of the bed. This was the first time in almost 28hrs that I was able to snuggle and hold Abbey. She did great and I held her for an hour and a half without her complaining of any pain. Sam and I then when to lunch and shortly after getting our food received a message from Ramia that she had spiked a fever of 102.7. With the fever coming on within the 24hrs post surgery we are treating it with Tylenol but not jumping to a blood culture just yet as those will be another blood draw and princess already has 5 different IV lines. To add another fun twist, Abbey started waking up in extreme pain around 3pm. Due to her size we could not go up on any of the medications we currently have so had to make several calls between pain management and pharmacy that took over an hour just to change her morphine to a different opioid. We gave her the new meds around 4:20pm and she is currently back to sleeping. We have a very very long and hard road ahead of her and we will keep everyone updated as best as we can.