Birk is requiring more and more sedation to keep him calm. The have switched him to Morphine and think they may have found a good dose for him. He has been moved off of Nava ventilation for now. He is riding the vent too much to participate in the study at this time. We had about a 45 minute battle with him about an hour or so ago. It took me, Nick, a RT, 3 nurses and at times a Nurse practitioner to hold him down. He is a strong little dude!!!
He is quiet now so I'm praising God for rest for Birk.
I had a bit of a breakdown this morning. Birk was having one of his thrashing moments and the nurses were trying to hold him down and explain how much medicine they had already had to give to him. They were fighting him... it was tough to watch. One of the Attending doctors "Raj" (I'm not sure his official Dr. name, I only know his first name) must have saw the look on my face and came in to ask if we were alright. At that point it hit me and I began to cry. What did Birk do to deserve this? Why does he have to go through all of this? Are we doing more harm that we are doing good at this point? I know in my head the answers to these questions, but my heart is really struggling with all of this. Raj managed to be not only a great doctor to my son at that moment, but a great source of comfort for me. I am sure he will never read this blog, but to him I say THANK YOU! Thanks for doing what you do. Not only for the patients, but for the parents too.
All we've heard so far is that everything is normal. Birk is reacting very similar to other patients who have gone through this. While comforting, I am still struggling.
Sorry for the blunt honesty of this post. I am not looking for pity. I just know when this is all over I want to look back and remember this day and that it was a good reminder of the challenge that we overcame.
1 Chronicles 28:20
David also said to Solomon, his son. "Be strong and courageous, and do the work. Do not be afraid or discouraged, for the LORD God, my God, is with you. He will not fail you or forsake you until all the work for the service of the temple of the Lord is finished.
Praying for you all! I know so well how hard it is to watch your baby struggle and have to be held down. Been there, done that. It literally breaks your heart in two but Birk is strong and so are you and it will be soo worth it in the end. Know you have so many thoughts and prayers being sent your way. Thinking of you all.
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