Friday, May 6, 2016

May 5, 2016

Jonah was off the ventilator all day yesterday. He was maintaining the proper level of blood gases. He was more responsive than I have seen him since his accident. They wanted Jonah to listen to music he would normally listen to. The Shade was raised to allow bright sunshine in his room. We were to teach him that it is day and give him wakeful cues. During the morning rounds meeting I became overwhelmingly angry. The Intensivists, Neurosurgeons, and General Surgeons rotate each week. I am learning that each has their own way of managing the same issue. While one doctor makes a plan of treatment, which he follows the entire week he is on, the next doctor comes on shift and chooses another plan of attack. I am learning that the new doctor feels threatened when I ask why he is doing what he is doing, when the other doctor had said we were going to do it “this way”. When I questioned the neurosurgeon, he stated that, “this is what I think we should do and these are the reasons and if you don’t like it, the other doctor will be back in 3 weeks and you could wait until then to make a move and hope for the best”. I wanted to jump on his head, pull out his hair and stick my fingernails deep in his eye sockets and scratch his eyeballs out; instead I just cried from my toes up. I am learning that while they are exceptionally bright, even brilliant, they lack social skills. It was after I broke down that The Brilliant patted my shoulder and told me to take care of myself or I would end up in a bed next to his. This was his way of saying, “I get this is hard.” While I am incredibly thankful for their abilities to manage Jonah’s health, I am not yet hardened  to their callused demeanor. Jonah is not just the human in room 21, he is MY BELOVED SON, MY FATHER’S GRANDSON, MY CHILDREN’S BROTHER AND THE BEST FRIEND TO OTHERS!!!!!!

He held Holland’s hand really tight, with his left hand. When she tried to pull her hand away, he would hold tighter. She just stood there and cried. It was a much needed affirmation to her that Jonah is “in there” somewhere. Later in the day Jonah held Michael’s and Jon’s hands.  In addition, when Jon asked him if he wanted to arm wrestle, Jonah turned his wrist inward and moved his knees, slightly, together as if he were making an effort to put his strength into it. At one point, when the respiratory therapist had come to suction him he opened both eyes a fraction, so that I could see the green in his eyes. I jumped forward and asked him if he were opening his eyes. I asked him if he could see me. He blinked a few times. I asked him again if he could see me. He gave no response to me that he could hear or see me. 

His blood sugars have been high. They have begun to give him an oral medication along with his shots of insulin to help manage this. They took him for a CT scan at 4 AM to see if there was fluid building in his brain. They were seeing if the shunt they have been using to regulate the ICP could be removed due to his brain’s ability to circulate the spinal fluid appropriately.  The CT scan showed that he had flunked that test; the fluid was ridiculously high and had to be drained immediately. This BROKE my heart as Jonah has probably been in excruciating pain in his head due to the fluid build up in the sinuses of his brain. What a terrible thing to be dependent on others and not be able to express your experiences, feelings, pains, and traumas – it hurts me and is absolutely overwhelming to me. I was informed that they were going to have to place a permanent shunt, which requires another surgery. He was taken for another CT scan for the surgeon to use to mark the path he would use to place the shunt. The surgeon explained that he would make an incision in his head, one behind his ear and one in his abdomen. Jonah would be NPO (no formula given in his feeding tube) from midnight until after his surgery. At 9 PM the lights were dimmed in his room and we were required to be quiet, we gathered around his bed for family prayer, kissed him good night and, with faith left for the night.

This morning the Intensivist came in to examine Jo. Jonah did not respond to anything except pain. He would not squeeze your hand or move his legs. I told the doctor everything he had done yesterday and he just looked at me and said, “Ya, he will respond differently every day, some good days and some bad”. I was told yesterday that this doctor is one of the most brilliant on staff here at the hospital, and he doesn’t have one belief in miracles. If it isn’t scientifically valid, it doesn’t exist. So so sad! I have to not let the “Brilliants” get to me. I have definitely hit the anger part of this experience! I want to beat the crap out of someone or something. I feel my brattiness. (I wake up and my teeth are aching like I need root canals in all of my upper and lower molars.) I anticipate that this is where I will remain for a good portion of this experience because this is my “shield” if I don’t seek spiritual help from my Savior.  Even with all of my education in the mental health field, knowing anger is shielding my fear, anxiety, sadness, helplessness, love, and despair, I feel that I might be consumed if I allow any other feeling, than my shield of anger.  I love my son!!!! #justwakeup jonah



  1. Darn I have been waiting to hear about Jonah and how he is doing and for some reason this post is covered by the prior post.

    1. Hi, what worked for me was to press CTRL + A, which highlights all the text, and paste into a word document. Hope that helps!

    2. I copied it and then pasted it in word and the remainder of the text showed up. Thanks for your help; more prayers coming Jonah's way.