Day 11

I get to the hospital and wait to be let in. I have 45 minutes until the 7am banishment. They have done the puff test again and he looks tired and weak. I scratch his head staples, rub hsi shoulders put on a different TV station, massage his legs and belly. He relaxes during these minutes and I feel a bit bettter. The doctor never did ok the anti axiety or longer lasting pain medications so he never gota chance to really sleep.

At 7 I go get coffee, where they know my order by now. I have a reusable mug and they all know it’s medium dark roast no room for creme. I do love Peet’s coffee. I go outside to the table, listen to a message from my cousin, call the insurance guy (out of the office till Monday  and try the social worker (no answer).

I walk around a bit to stretch my legs then go up to the semi vacant waiting room to charge electronics.

I am finishing day 10 before it melts into day 11 or 12. I listen to Foo Fighters to release some rage and cry and type. A woman comes up to me and mentions she has seem me around for awhile (fuck me) and she wants to keep me in her prayers. People are so gracious and supportive. Strangers reach out and send their prayers, good wishes and support. I tell her Colin’s name and she says she will pray for me. I am grateful.

I finish up, go use the RR and head in to see him. They keep me out for about 15 minutes. When I come in he’s not happy. They are setting up for the puff test
and he does not like it. The nurse emphasizes it is really good for him and he rolls his eyes. I reiterate, it helps him. He gets his look of resignation.

They begin to set up and a new doctor comes in. Tall, blond and she is like a sergeant  She immediately understands Colin doesn’t like what she called the “shake and bake” and told them to hold off. She talked about the tracheotomy, aka “trach”.
and all the risks and gave us the same information we had been given for a week. I FINALLY sign the consent forms. She says they will do it at 10.

Colin is asking,  spelling, if they can wait to do the trach to see if he can breath without the intubation tubes. I told him I doubted it, he needs to cough. Coughing will need to be a habit for him. Cough as often as he can. But he hasn’t had the chance to practice with the respiratory problems he has been having. I tell him we need to clear his lungs. To keep them clear until he can do it himself. He sighs and understands.
He is such a brave young man. I would have been in restraints by now, but he hasn’t been. His nurse this time (it changes regularly, can’t have the same nurse for too long apparently) comes in and takes vitals.
She asks what I do and I tell her I teach high school math. She responds, ugh, “Math is so hard!” I am stunned. Does it really take so little intelligence to be an RN? Then I recall in college in my upper division science classes, usually a biology or micro or physiology, many of the nursing students were not very adept at even basic algebra. For fuck sake, this country is so willing to live in mediocracy. And we are headed towards
idiocrasy at lighting speed. I realize, I am smarter than most of the people in the hospital, simply because I do math. There isn’t anything I cannot figure out, no problem I cannot solve, no information I cannot assimilate (including rocket science.. pretty basic actually) and no bullshit I cannot see through.

When they do the trach they will do another “brach” aka brachioscopy, and clean out his right lung. A feeding tube will be put in to make sure he is getting enough calories. At 10 the brach technician shows upand sets up. At 10:20 she is waiting and Colin is stressing out. He spells that he wants to get started, he’s anxious, how much longer?

I go inquire, knowing the answers is always, “we are waiting for the rest of the team.” I am told “we are waiting for the rest fo the team”. I mention he is getting stressed and the docotr orders something to calm him.

By 10:25 everything is moving in, they are prepping him, getting him sedated, and sending me away. I tickle his toes on my way out always hoping for some response.

I go down and call the social service and sign him up for medical. I have a list of things to get to him and he sends me away with a binder of papers.

I head over to the therapists office where I need to get a medical release. When Colin was struggling with addiction, my husband and I went to a therapist to help us cope with the strain on our marriage. We saw her for about 18 months and after Colin finished rehab, was working and in school, we were graduated to “as needed” basis.
I really needed her now.
I arrived early and spent 10 minutes gathering the trash in Ian’s car. They typical young college man accumulation. After my session (the first of many) I went and got a $5 car wash and was able to vacuum the car out.

It was 100 degree and the ac doesn’t work in Ian’s car. I didn’t fix it since he lives in Santa Monica. I wish it was working now. I could tell the alignment needed to be adjusted also.
And the windshield was cracked, the back brake light broken. I was back in a car I had outgrown 20 years ago.

I get back to the hospital and Amber has been there. His father has arrived with his wife and they are in with him. Loni has texted me she is on her way and I tell her I will wait and we can go in together.
I use the RR and inside run into a very sweet, pretty young Navy sailor who has been around the ICU for a few days. She introduces herself as Sarah, is there for a friend who had a motorcycle accident.
There were many people there for him and she offered support and prayers. They were on day 4. I had watched many many patients come and go the past 11 days and I hoped her friend would be out of ICU soon.

I waited for Loni and when she arrived we went in. The doctor told me the procedure went well, they were able to get a lot of stuck stuff out of his lungs and then reiterated (again) his inability to cough and move secretions out and the trach would make things easier. I said I understood and was going to see him.

Loni and I were at his bedside and he is asking for pain meds. His nurse comes in and says she just gave him some. He is very insistent that she had not. She states she is pretty sure, but she will double check. He is shaking his head, no she did not. She checks.  “Oops! You were right! I told you 20 minutes 30 minutes ago” Loni and I look at each other in disbelief. Isn’t it her job to know?
I don’t want to hear excuses. Does anyone accept excuses from me? No one cares if I’m busy or overloaded. I am still expected to do my job. I never have time to sit around and chat, use my cell phone and update my social media. I am not allowed to have my cell phone out because my students aren’t. I can only use the RR during the breaks we have each day. And no ones life is in my hands, which is why they  get paid the big bucks right? We witness the pain medication. He is hungry too, but is not allowed food in the feeding tube for 24 hours. Now he’s very unhappy.

We are barely handling this and some young intern pops in. He’s from neurosurgery and he’s there to take the staples out of his neck. The nurse lets him know it was already done. Loni and I look at Colin, at each other and wonder again, why didn’t he know that already? In the age of instant updates can it really be that only social status and daily events are instant? No one thought to expand it to the most important
area? Why aren’t patient information on a secured web database for instant updates? DOn;t give me the bullshit of “security”. Hire some hackers to find the flaws and fix them

I fell as if they are going to walk in with a hand full of leeches, telling me he needs to be bled. I want him out of the hands of these people more than ever. Not that it’s the individuals it’s the system. It’s inefficient, which makes
it ineffective. Old ideology old thinking, old medicine.

Colin is frustrated and he tries to spell something to me. I am not getting the message even though I am trying. He gives up. I cry. Loni is very supportive, reminds us both how tired we are and we will do better another day.

He seems comfortable and at 2:58 we are reminded we have to leave at 3. I kiss him, tell him I’m sorry for not understanding, I love him and I am so very grateful he is still here. I won’t be back till Sunday night and his father will be with him for the weekend.

I head out of the hospital without intending to return for the first time in a week. My friend picks me up in the front. She had retrieved my yoga mat from my classroom (I had intended to do yoga during my prep but ended up picking up an extra class). She drives me to Ian’s car and drops me off.

I go to my in laws to pick up some stuff, she feeds me some amazing homemade vegetarian soup, and I go over to a friends house to transition into normalcy.
My husband meets me there and they let us crash their evening, feeding us, visiting and allowing me to let go of the hospital, get rid of the daze and get ready to be at home without my boy.

Day 10
Still in ICU when they let me in about 645. I have about 15 minutes to see how he is before banishment. He looks pale, stressed. The nurse tells me he didn’t sleep.

She tells me he had a fever last night but it spiked. He indicates he wants be to rub his neck. I feel the tension but the tremors have stopped. he seems irritable and angry..

He asks for pain medications, is told he can’t have any and he lays back resolved to pain. I continue to rub his shoulders till 715 when they send me out.

I get some coffee, call my husband, write some and research more.

At 830 they tell let me in. Respiratory therapy is in the room, doing another puff test (they puff air into his lungs, shake the bed to loosen stuff).

He isn’t happy about it. He doesn’t want to be touched. He wants to rest.

They start the test and have to stop when he isn’t getting enough oxygen. They suction out clear thick mucus and start again.

By now the doctor is out at the nurses station and discussing why he is having trouble. It’s his right lung now. They one they punctured.

The send me out so they can do a deep lung culture procedure. When I am leaving the nurse is telling me it’s his left lung. I correct her. The Doctor tells the nurse they are leaving the chest tube in and see how he does. He lets her know it is the right lung.

Once out, I call his father and my mother. I get texts from friends and wait. 20 minutes later I can go in. He still just wants to rest, be left alone.

My mind is on over drive. So many thins to take care of, so many people to contact, so many changes.And so very much anger. Not at life or any god. Shit happens. And this happened to my son. No, the anger is growing at the hospital staff.

I am amazed how indifferent these people become. Each patient is just another job, another chart to fill out. Many nurses show empathy, not many doctors.
The doctors on the critical care team treat systems. They may link the systems together but they never connect it to the person, to their well being, to their peace
of mind and contentment. It’s as if their treatment must be painful, uncomfortable, stressful and hard. I so disagree.

I still do not understand why the fuck they didn’t just sedate him for 2 days after surgery, feed him, give him meds to monitor and maintain his vitals and let him heal. Instead, it’s been non stop damage control over the risks that came to fruition. Do they just need to empty the ICU beds (there are not always full and I have been here long enough to watch MANY come and go quickly).

I may not have a medical degree but I believe if they had given him some peace and allowed him to recover he would be in a better place than today. Instead he has been stressed, in pain, been ambushed with tests and treatments that leave him feeling worse, completely exhausted and never given enough time to rest. I do not understand that.

The indifference is apparent in so many subtle ways. The loud conversations right outside patient rooms, the OCD control of rules that should be flexible given the circumstances, the talking down from the doctors as if their medical degree elevates them intellectually.

Most of the support staff, the nurses, technicians and even the janitors have been very good. But the even the nurses, you can see it and feel it. My child is just another patient that will come and go and there is no connection beyond the charting, the job requirements.

I wonder what kind of a teacher I would be if I did that. Treated each of my students as if they were just another one who will leave and I will not see again after my job is finished. I don’t think I would want to do my job anymore if it came to that. If I don’t connect to the person, there is no way for me to reach them.

By 1130 his friend Amber has come to read to him. She is always so loving and supportive. She is one of a few people he has had the energy to see. He still is not feeling well and so she and I sit there with him and around 12 some co workers and good friends come by so I leave him with Amber.

I vent my frustration at the damage control efforts of the medical staff and they listen and allow me to get it out. My husband and his boss, another good friend, bring me some lunch and after wolfing it down I call a friend’s sister who was an ICU nurse. She confirms what along road we have ahead of us and I am beginning to face the idea he may not get much better. With everyone always talking about him I must accept he may never walk again and I must work with that and make sure he remains healthy, strong and has every chance to improve for the rest of is life.

Back in his room he is still angry, uncomfortable and wants to just try to rest. He has not had a good nights rest in 4 days. A couple of respiratory therapy guys are in the room and are talking at the machine.
They introduce themselves and one is in training. They continue talking at their machine, right next to Colin. Colin is getting irritated. He is glaring at them. The experienced on looks at him as asks if he wants them to leave. Colin nods and mouths “thank you.” They continue to talk at the machine. He glares harder. The RT says he has such perfect display it’s s good teaching tool. Coiln glares more. I inquire if there are any other patients on ventilators in the hospital and they finally agree to leave. Colin again mouths “thank you” and rolls his eyes in amazement at their lack of courtesy. I give him the massage treatment and let him relax and rest.

I get a message from the insurance with a settlement, and I start to research wheelchair adapted vehicles. I get another from the medical worker to get Colin signed up for medical. I research recovery from complete spinal cord injuries and c level can expect one level of improvement. That would men his hands and breathing. What a difference one vertebrae level makes.

I am still hopeful. I am planning ways to exercise his hands to build strength and dexterity. I am creating exercise devices to assist in keeping his muscles strong. I research nursing care for the transition time between his release from the hospital and when the house modifications can be ready.

Amber leaves about 115 and he begins to let me massage him again. He is always in pain. He relaxes when I massage his neck and shoulders, when I scratch his head around the staples that held his scalp together.

After a bit he is finally sleeping a little so I let him, sitting in the chair, researching, looking at him, watching..looking for the miracle movement.

At 315 they banish me. I have stolen an extra 15 minutes to be with him. When I leave he is resting, albeit fitfully, and I go to meet my friend.

She takes me to her house, we talk and she listens. She gives me food, water and a place away from the now hated hospital. At 4 they make me wait for 30 minutes so I don’t get in until almost 445.

He is complaining about the puff and shake but he looks better. He still has a fever, is in pain has had all his pressure support taken off his legs. He motions he wants to spell. He asks for a sip of water. I look at his cracked dry lips. He pleads. I think, fuck it. I look for staff members and give him a couple sips to moisten his mouth. He asks for more
but I don’t want to hurt him. I go get his nurse. This guy is one of the few Colin likes. He seems to understand Colin needs to rest. He tells me he has asked for a different pain med and some anti anxiety medication to help him sleep. My first thought is WHY THE FUCK ISN’T THE DOCTOR DOING THAT and my next one is THE FUCK HEAD DOCTOR WILL PROBABLY DO SOME POWER TRIP AND
TAKE OFFENSE AT A NURSE TELLING HIM HOW TO DO HIS JOB RIGHT. Which of course, the doctor never did change his pain meds or give him something to help him sleep. Fucking arrogant asshole. I don’t buy the shit about “watching his breathing”. How can he breath if he’s got an infection and can’t rest. That’s what I mean about not treating the person.

I ask about the water and the nurse tells me he can’t swallow right with the tube, but he does bring me ice water and Colin can suck water off a washcloth.
So from 500 to 715, when they kick me out again, I give him sips, massage his body and talk about the future. I tell him about the first hours after the accident, which he does not remember.
I talk about exercises for his hands and chest and legs. I talk about his coming home and how we will never stop getting him to the next step.

By 710,the next banishment time, he has told me he is ok emotionally. He indicates he isn’t going to stop either. I get a sense he is as grateful to be alive as we are to still have him.
I feel better than I have in 10 days. If my child is ok, then I am ok.

From 720 to 810 I talk with my husband on the phone. I finally find a quiet spot with plugs for charging things, move one of the seats to the corner overlooking the town and chat. I miss him so very much.
I miss what our life was 11 days ago and how it will not be again for a very long time.

He is going to come back down tonight so we can sleep together for the first time in so many days. I am looking forward to that.

When they let me back in at 845 Colin is worse. His fever is still up, he doesn’t want any more sips of water. His neck is full of muscle tremors again. He spells that they
did the puff and shake thing again and he feels bad. In more pain, more exhausted and unable to rest.

I spend the time until 1030 massaging his trembling shoulders, scratching his head and helping him rest. I want to stay longer, but 16 hours is my limit. And I need to stay strong for him.
I need to stay healthy. I can’t let him down. There is no one else here.