A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Friday, June 17, 2016

Day 1

Today was not a great day for Nickolas.
It was a tough day

He still needs to lay flat, on one side or another and we turn every 2 hours or so.

Last night was not great because nick would wake up in pain and then we  would have to play catch up. So the pain team came today aand we decided to change the PCA (patient controlled anesthesia, so only he presses a button when he is in pain and it gives him a small amount) to a NCA (so only the nurse can press the button). We also stopped the continuous morphine and moved to an oral dose.

It also meant that Nick has been more alert.
But he is afraid to more. So he is stiffening up. So that makes it more  painful to move. Even moving his hands and arms. He just lies there like a board.

I have been working on it. But some of the toys I brought he needs to be sitting  up more. And that will be tomorrow. He has been asking when Katheryn will come to visit (tomorrow) and so every time he falls asleep and then wakes up, he asks if it is Saturday.

We did have a Jedi battle. He is starting to get swollen from not moving. I have been getting him to stretch and open and close his hands. But he doesn't really want to do anything.

We've been watching the movies that I brought specifically for the hospital. The Child Life Specialist came and brought us some stuff, some crafts and things to get his hands moving. But Nick wasn't  very interested.

He doesn't know what he wants. But he knows he does not want to turn over.

We have been reading his Falcon book. The volunteer came at one time and stayed and read to him while I left the room for a bit.

We also had a visitor! Lisa and her friend came and they brought me some home made mac and cheese!

Nick hasn't been eating very much, just a couple of bites here and there.
We have had lots of different people come in. Starting at 7am when the doctors first started rounding. We have also seen the pain specialists, pharmacy, the nurse practitioner, Dr Rutka, and some students (we had a student who was very happy that I let her do the catheter).
So far everything is looking good. Tomorrow we will look at getting up.

We had done lots of hand holding today.
Nick has been trying very hard to smile. He says that he is smiling in this picture.

Our nurse for the last 2 days (the one I know from school and who had him when he was born) finally got a smile out of him before she left today.

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