Colby’s night in the PICU #prayingforcolby #dystonia

Last night Colby did really well. I cannot tell you how surprised I am. Every other time we’ve been in the PICU he’s been up all night, tense and screaming. I think the morphine might have helped a little but his blood pressure was great, his heart rate was phenomenal and he was very peaceful.

He is still on a little bit of oxygen but that’s kind of expected with him. He was pretty junky between the MRI and yesterday. It’s why I didn’t have him start school last week.

The doctors came around this morning and they are going to send him out of the PICU in a couple hours. He’ll go over to the Neuroscience Trauma Unit. It’s our home away from home and they are awesome!

I saw one of his favorite nurses yesterday and she said she was going to request him once he gets over there.

I’ve found it kind of funny that I’ve been telling all the doctors and nurse practiotioners what the deep brain stimulation is for. It’s not a common procedure for kids and so for some of them this is their first experience with it.

One of them was kind of shocked that the neurosurgeon said that his dystonia might get worse from it before it gets better. She was surprised that I knew that and that we are expecting it. They also were surprised that they dont turn it on immediately, that in some patients you have to let the brain adjust to the electrodes being in there.

She thought that was kind of unusual. I did too at first but after reading more and more about it I’ve just accepted that it is what it is.

We are so excited that he is tolerating this so much better than his previous surgeries. I know I was anxious about it before but it just reaffirms my belief that this is what he needed right now. We prayed about it before deciding to go forward with this and I felt very peaceful and good about it. Then I started over thinking it and letting my own fears get in the way.

I am continually amazed at the advances in neurosciences even in just the last three years since Colby’s stroke. I know that this is what he needs right now but there might be something even better in ten or twenty years. I am confident that Colby will benefit from going through this. It just reaffirms my belief that there is a plan for everyone and everything you go through in life and I’m so grateful and honored that I get to be this little man’s mom.