So surgery day was emotionally draining as I expected it to be but I was surprised that the time actually waiting during the procedure wasn’t as bad as I’d thought. Children’s has a liaison nurse who kept us updated at least every hour or so and we had my parents, Tom’s mom Barbara and Aunt Carol physically with us while we waited. It was cathartic to write blog posts and facebook updates to keep us distracted.
Once we arrived in the ICU at around 2 pm we were able to see and touch Julian…well at least the parts of him that aren’t covered by wires. He is on a breathing tube and they are giving him medicines to keep him sedated and keep his blood pressure low. He has a nurse 24/7 who also administers some pain medication as well. The goal is to slowly get him to the point where he can get off the breathing tube. The nurses and doctors here say he is doing quite well recovering. Dr. Emani stopped by and gave a positive report.
He has been waking up and kicking his legs and such giving the nurses a bit of trouble – that’s our active little guy! Supposedly it is a bit of a science to get the right “mix” of sedation and wakefulness. Right now as I type the nurse Jim just updated me that Julian is at a great place right now and the next step in the wee hours of this morning is to work toward removing that breathing tube. Julian is making good progress!
To make Julian feel a bit more at home here, we brought stuffed animals from home along with a light blankie Julian likes (thanks Lynn) and a musical seahorse that plays soothing sounds (thanks Rick). I debated bringing hand knit blankets made for us by Kathy and Liz, but I didn’t want them to get dirty. A friend of mine Melanie suggested that I bring a shirt I had slept in over the past few nights to put in Julian’s crib so he can smell me which I did.
Uncle Terry came to visit and we tried to keep the mood light with smiles but the elephant in the room is really just how hard it is to see Julian like this. As you can see from the photos below he is just a tiny baby with lots of big medical equipment helping him to recover.
I brought in an album my dad made for us as a christmas present which was a suggestion from another friend Sarah so the “nurses could see what he looked like without all the wires”. I have found myself flipping through the album to remember Julian’s big blue eyes, gentle demeanor and his cute smile. I miss him.
After Tom and I took a quick break to walk to Bertucci’s and grab a bite to eat around 7 pm (thanks to Kristin who gave us a gift certificate!), I fell asleep around 9 pm and slept until 1:30 am or so and now I am writing to you. I feel pretty rested but am going to try to sleep a bit more.
I don’t know where Tom is right now – he must be sleeping in the “family suite” they have here at the hospital – which is on a separate wing. It is a very small room with a twin bed and a nightstand so I have no idea why they are called “suites”! But it is a dark room with privacy which is as good as gold here in the hospital. Not surprisingly, I’m finding it hard to really sleep right now though so I will have to be satisfied with naps for now with the comfort of my childhood teddy bear Snowy. Tomorrow (well technically today) is another day….