I have learned so many things these past few weeks. What a spinal cord injury is, how it may or may not heal, how nerves regenerate slowly. I can change bedding with a grown person lying on it, I know how to do sterile trach suction, administer meds through a stomach tube, wash, dress and move an injured adult who cannot assist. I have learned to question doctors, thank the nurses and staff, insist on my rights as a parent. And I have learned to watch for the slightest change. Whether it is his heart rate, his oxygen saturation, his urine output, temperature or a slight new movement in his body. The smallest twitch or a number change of +1 can make our day.

Today started well. He made it through the night with his one way valve, had a good appetite and his stats all looked good. OT was some stretching of his chest and shoulders. The ST came by and she was pleased with his overnight valve tolerance. E was almost dressed for PT when they called for the MRI. He was literally whisked down. They kicked me out and after 30 minutes. I called is father, my mom, paced the freezing empty hallways. Eventually, the door the the scan room was open and I could see in. I was peeking through the window, watching him on his back, struggling to breath. His stomach was going up in jerks as he coughed and gagged.I knocked on the window, yelling to take the valve out, but the machines are too loud. I watch him struggle on the otherside of the glass, unheard and uaable to do anything. He was still strapped into all the MRI shit, gasping, coughing, gagging. He was exhausted, stressed and crying. “I couldn’t breath.” He cried. He was shaking.

We got him back to his room and dressed for PT. Because of the stress, coughing and being on his back, his stats dropped. He was only able to get in the wheelchair for about 35 minutes, then they all decided (RT, PT, OT and ST) that he had to go back to bed without the valve. He was crushed. He had a bit of muscle evaluation while up, and it showed he does have triceps contraction on both sides, but he wanted to do more. His oxygen saturation went from 87 to 93 once in bed and he asked to get back in the chair. They said no.

It was probably better as he spent the next 3 hours coughing and getting suctioned. He can get some of the thick mucus to a certain point, then it gets stuck around the tube. He wants to try to get it up himself, but he ends up exhausted. It is a dance around too much coughing and too much suction. He won’t let anyone suction him anymore but me.

After his afternoon of hacking, he spent the evening sleeping. I cleaned up his room, researched stuff online. My husband came with some food. We visited for a little while. And then CT was calling. I had been giving him the contrast stuff all afternoon. He was down to the last 200 mL.  CT would take him next.

I waked my husband out to his car, said goodbye, which I do far too often it seems. Went back up to get Colin roused from slumber and ready to go down for the CT. By 6:15 he was on his way, me in tow with the last of the contrast stuff, his valve and the tube feeding syringe.  What I did not have, I will never forget to bring again.

He had just woken up at 6. He had lots of secretions.I suctioned him before we left but he was in need of more now. Gasping for air, mucus in his tube. I pulled out what I could with a washcloth, but he needed suctioning. We went the long way around to get into the CT room. We had informed the tech he would need suctioning. The tech was ready..but not for a trach. “I don’t have any of those trach suctioning kits”he declared, as if I was out of line for expecting it. Fuck me, I thought it was a hospital. The tech looked at me and said “You are going to have to go get one.” While I am thinking “Why the fuck am I doing your job?” I say ” I can, but how do I get back through all the doors and elevators that have ID badge access only.”  “You have to take transportation with you.” pointing to the transport guy. “Why don’t you call his nurse”, I suggest. He does. She brings 2 kits on under 10 minutes. I suction him, clearing a good bunch of thick stuff. Whew..we can continue with the CT.

The tech gets him ready and she tells me I can wait in the control room in case he needs anything.  The moron tells me I have to leave. The transport guy tells him, the tech told me to stay. “Oh no, you can’t” He tells her I have to go out. She says ok. I ask him what is so secretive about a CT scan. “Patient confidentiality” he states. I ask if he really believes I give a hit about any other patient as he closes the door. I just stand there on look inside the window of the control room. I cannot see Colin, but I can see every computer monitor, all facing the window. Patient confidentiality my ass. What an idiot.

Less than 5 minutes later the tech brings me back in. “His IV isn’t working. We have to get a new one.” Holy shit. We wait for the “Miracle IV nurse”. Her name is Teddy. She is a small pretty Black lady who looks like she know her stuff. She does not work miracles this time. After 3 pokes, endless rooting around with a needle in his arm, declaring “you made me sweat” she succeeds. She was able to get one into the most sensitive, painful section of his arm. He cried, yelled, swore, and demanded she stop. She did it, he made it. I swore to him he would have to be near death before we did any more of the fucking tests.

We have been in the CT scan room for 90 minutes and the scan has yet to be done. It is complete in under 15 minutes. He is back in his room by 8. On the way to his room the transport guy mentions to a co worker how long he was there. “I have never waited anywhere for so long.”

He has his dinner, just a little. Re heated chicken nuggets are too chewy for him to handle. He starts to feel super hot. Apparently the IV they give him for the CT elevates his temperature. In addition to his fever, he is hot to the touch. I strip him to just a pillow case covering his, put wet washcloths all over, lower the room temperature and put a fan on him. It takes about 20 minutes for him to feel cool again. He has his puff test, trach cleaning. I let him rest before I change the padding and sheets underneath him, put on a fresh gown, get him ready for “the valley”. By the time I leave at the early hour of 10:30, he has all his meds, snuggled in the valley and sleeping. I am amazed at the early hour I climb in to bed. I haven’t been sleeping before 11 in a while. It seems decadent. I drift off worrying about too many things, hoping tomorrow will be less stressful and give him a better sense of improvement.