This was supposed to be a day celebrating Zach’s graduation from Dixie State University. I fought with myself to at least dedicate my morning to Zach and resisted the great urge to go early in the morning to check on Jo. I was to be at the University by 9 AM. Just as they called the English majors to approach the stage my phone rang. It was the ICU. Of course my stomach jumped and I ran to the lobby to take the call. They needed me to come sign a paper for permission to start a new PICC line, as the one in Jonah’s juggler vein had stopped working. I finished watching Zach walk across the stage and through the “D” with the Jonah Captain America doll hanging from his lei and ran for the hospital.
I could tell immediately when I walked into Jonah’s room yesterday morning that something wasn’t right with him. I panicked as I walked to his bed. He was breathing hard and fast. He looked as though his chest was forward and he was “stiff”. Water from his trach vent mask was running down his neck and chest. It was freezing in the room and the box fan was blowing, on high, straight at him. I grabbed some tissue to dry his skin off. He had goose bumps down the arm closest to the fan and there were beads of sweat on his forehead. He was shaking. There was no nurse to be found. There was one man on a phone at the main desk and a respiratory therapist standing in the hall down by the cardiac patients, other than that no one. As soon as I started talking to him, his left eye raised a fraction. I was screaming in my head, “WHERE IS SOMEONE????” I asked him what was wrong. I asked him if he could hear me. My sister grabbed his hand and he held on tight. She asked me why he was shaking. I went back out into the hall to see if I could find someone to even ask where his nurse was and find a respiratory therapist to help him. There was NO ONE!!!!! Finally, a nurse walked by and Chandler asked her if she was his nurse, “No I’m not, but I’ll find her for you”. Another few breathless minutes passed as I tried to console Jonah and a nurse I had never seen walked in. I asked, “Why is he breathing like this?” and “Why is he shaking?” A respiratory therapist then walks into the room-the only therapist I have a difficult time with. (There are those individuals you KNOW, know their stuff and those that passed the tests and are trying to figure the practical portion out on your loved one.) Jonah’s nurse answers my questions by stating, “Everything looks good to me; his numbers are better than they were awhile ago.” I am astonished!! I asked, “Well, what were they ‘awhile ago’? His respirations are way high, his heart rate is high, and his blood pressure is high. There is something wrong.” She says, “His heart rate has come down from the 130’s and his blood pressure is better because I had to give him more meds.” I told her, “He is in pain or something. Something is not right.” The nurse looks at the respiratory therapist, who is now fiddling with Jonah’s trach mask and trying to dry up the drops of water running from inside the vent mask down Jo’s neck, and states ‘“His numbers look good to me, what do you think?” The respiratory therapist agreed. I asked when the last time he had had a breathing treatment, thinking that the albuterol would make him a little shaky. The respiratory therapist told me it had been 4 hours before and that she was there to give him another. Well, that wasn’t it. I asked when the last time he had had pain meds. The nurse states, “Oh he hasn’t had any since his surgery last night because he hasn’t been responding.” My alarm went off in my head, “WHAT?????????” I told her, “HE’S IN PAIN!!!! GIVE HIM SOME PAIN MEDS!!!!!! HE IS TOTALLY RESPONDING!!!!!!! My heart was racing; I felt I could hardly breathe. I tried to soothe Jonah and tell him everything is okay and we are going to get him some pain meds. He squeezed my hand as tight as he could; his eye still open with that little slit, blinking a few times. He didn’t move another muscle. It had been 13 hours since surgery!!!!!!! 13 hours without any pain meds. I don’t think he has been without pain meds the entire time he’s been in the hospital and for the majority of the time he was getting IV drip, which was recently DC’d and changed to getting “oral” meds that are crushed and placed into his stomach through his feeding tube every 4 hours for even better and longer relief.
The nurse clicks and clacks with her fingers on the computer keys stating she would see what he was getting before and check to see what was ordered for him. She was yammering about being a new nurse for Jo and that she was unfamiliar with his “baseline normal ”. I tried to soothed Jonah and waited as she left the room and came back with a little container that resembled a “Sweet and Sour” packet from McDonalds. She peeled back the aluminum top and sucked the pain relieving contents up the syringe and stepped to Jonah’s feeding tube to push the meds in. She tells me, “This will take a while to kick in.” Within 30 minutes Jonah’s heart rate was under 100, his blood pressure was 111/45 and his labored breathing had ceased. He looked calm and pain free. It is absolutely painful to see him like that! What a terrible thing to be locked in a body without the ability to speak a language that the person caring for you can understand!!!!
May 7, 2016
Jonah has a new PICC line in his arm now. He is wearing special boots, which keep his feet from pointing down; they keep his feet at a right angle. This keeps his ligament up the back of his calf stretched so that when he can finally walk again his feet will sit on the ground correctly. He has a new nurse he’s never had before. While working with him this morning she folded her fingers so the bones in the fold were hard against his sternum. As she pushed, she moved them back and forth across his sternum and yelled, “Jonah, wake up”, several times. All of a sudden Jonah’s eyes popped open. Everyone talked to him. I asked him to squeeze my hand. It took a moment and then his fingers tightened around my hand. His left eye stayed open, while he slowly closed his right. I told him, “Mama is here Jo. Do you hear me?” He moved his lips, slightly, as though he might be trying to say something. A tear fell from his eye. And then his eye closed again. He seemed so tired!! About that time the physical therapists came into the room. It was decided that the EEG leads would be removed from his head and they would try to sit him up in the early afternoon.
This was the experience which helped me understand better how many physical deficits he will need to overcome. His protective neck collar was put back on him. The therapists lifted him to the sitting position, with his legs hanging over the edge of the bed to dangle on the floor. He could do nothing on his own. His arms hung heavy on his lap. He had no ability to hold his head up. He had no ability to hold his torso up. His legs shook due to the reflex triggered by his foot being placed at a 45-degree angle to the floor. The therapists yelled for him to open his eyes, while encouraging him and telling him he was doing great. His eyes opened for a moment and then closed. He looked exhausted. It hurts me to see him struggle to this degree. What a miracle to see him do these things only 21 days post injury. It is helping me adjust my expectations for the near future, and I know he will be made whole by the end of this journey. The Lord is teaching me to look only to him. I am challenged each day to stay close to Him, to look up and not around. He strengthens me. He gives me unusual understanding and keeps me from despair. I have been blessed with many tender mercies, sometimes hourly. I have strength beyond my own to watch those things Jonah is going through daily. I have been terrified one moment and given peace the next. I have experienced many tender mercies, most days on an hourly basis. There are moments when I am looking in refection to the day’s experiences and cry because I am overwhelmed with what the Lord has brought us through. I cannot believe it; it is truly incomprehensible without looking up. I have to look up and not around!! I do not walk on my own feet. I have been being carried. I love my son!! #justwake up jonah