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.

I get to the hospital by 7. He is getting his RT treatment when I get in the room. The RT says he sounds really good. He does not need suction. At this point we have complained about his struggle with breathing enough and each member of his treatment team are in search of the Pulmonary MD to get the trach swapped.

OT arrives before breakfast and get him dressed. He is able to eat some, but just enough to take the growing number of pills in his pill cup. I inquire what it all is. Pain, muscle relaxer, multi-vitamin, vitamin A, Zinc, something for his stomach and something to loosen mucus. His RN was talking about a “half pill” for his heart rate.  Colin protested the heart med. “For your fast heart rate” she told him. I didn’t see a half a pill nor do I want medications regulating his heart rate if it is ok. I mentioned it to Colin after they left. We agreed there seemed no need for the half pill.

It is unfortunate that his PT was scheduled before the trach was swapped. He struggled to breath as they sat him up. His stats dropped (they call it de-stating..is that a word?). He was only able to sit for a little bit, then his session was over. Maybe tomorrow will be more productive.

His OT had made a successful inquiry into a different room. Bigger. It had just become available the day after Colin arrived. So, he was moved. It is bigger. There is a cot and a table. This is for the long term patient. It’s nice to have the extra room even with all the machines. Suction machine, huge thing on wheels, coughing assist machine, one they don;t use much because it’s “old school”. IPV machine for the puff test. Oxygen tank. The wheelchair is not even in the room yet and we can sit maybe 5 people in here.

The moment he is settled, Pulmonary arrives, swaps out the trach and sweeps out, all within 10 minutes. He can breath easily now but his oxygen stats are lower. He is coughing and hacking stuff. His RT treatment is done again and he needs some suction.I get some good stuff out. The mucus loosening meds, the RT treatment and the trach swap with lubrication, are all causing him to have extra secretions and some thick stuff. His stats plummet during lunch and the ST pulls the valve. He cannot eat now.

His temperature begins to climb by early afternoon gain, as always. I turn him, get his clothes off and TED socks to try to cool him off. His RN tells us the Medical MD, from his transfer back to ICU who is apparently still hanging n the case,  want a bunch of tests to determine the cause of his fever. Colin, myself, his father, his rehab MD and most reasonable people all think the fever is from the new hardware in his neck. This medical guy, whom I have never seen and do not think he has seen Colin since ICU, if at all, won’t have such a simple explanation. Colin is schedule for another MRI, CT scans as well as leg ultrasound to check for clots (even though they give him blood thinner twice a day AND he has a filter in his vein still). WTF we ask each other.

Not long after his valve was pulled we realized I had not given him his meds during lunch. I put the valve back in, he had his meds and he was doing well so we left it in. They bring in a full liter of “contrast” liquid that has to be ingested before his scans. And he is not supposed to have anything to eat or drink except this stuff. He resigns to his task and I start giving him about 60ml at a time through his stomach tube.

My husband arrives to hang out and visit. Colin begins to have low Oxygen numbers and is coughing hard. He drops to 87 so I suction him and get some out. His numbers stay around 88 and get to 89 when his valve is back in. He is not struggling to breath, does not look pale. His numbers are stable. I get another oxygen sensor  and put it on his forehead. 100%. I mess with one one on his finer, still says 88. I am going to look up any difference in reading for these but shouldn’t his oxygen be 100% fucking everywhere?

By now transportation has arrived to take him for an ultrasound. I hug my husband and follow along. The ultrasound is good and then we wait for 35 minutes to get back to the room. I had to go searching for someone to let them know he is taking contrast fluids for scans to expedite the transfer.  The Supervisor ended up taking him.

Once back in the room, he rested with great oxygen stats (97) and I administered the contrast stuff slowly over the next couple of hours. I put fresh linen and pads on his bed,  remove the diaper, wash and dry him.  By 9:45 I went searching to let his RN know that he was getting the last of what he needed to have. She told us it was going to be a couple more hours. A scan machine was broken and they only had one for all the trauma, ICU, CCU and critical patients. I protested. He cannot eat, he cannot drink, he just took all this crap and now he waits. My confidence in the unseen MD is waning. We waited until 11. “Fuck this” Colin says. “I gotta eat.” ‘Agreed” I reply.

I hunt the RN down and ask to reschedule for tomorrow, he is going to eat. She tells us it will probably be the same tomorrow and they won’t call for him until midnight or 1 am. Colin is hungry and he wants to eat. She says she will let them know he is not going down tonight, I heat up is dinner and he get to start eating.  In about 15 minutes transportation arrives to “take you to CT”. Seriously? “I am eating, I can;t go” Colin says. The transport guy says “I think you can, let me check.”  Colin says he is going to keep eating and I keep feeding him. The guy returns and say sit’s ok if he has eaten. We look at each other. It  seems by now we would be used to the lack of communication between departments. This really is ridiculous.  The RN was told no food or drinks, gave him meds with water. CT says no food, then food is ok. Colin just wants to eat. He tells the transport guy he will go tomorrow and drink another liter of that contrast stuff, just so he can eat.

By 11:30 he has eaten everything. By 11:45 he is drifting off so I put him in the valley. With great reluctance I let him know he had been given his sleep med long ago. He was tired enough to give minimal grunts of disapproval. I kissed him, made sure he was comfortable and clean, left for the rest of the night. Finally crawled in bed, missing my husband, by 12:15 am. Maybe later today would prove to be better.