It’s been awhile since I updated. Not really much to say for months. He’s been bed bound healing his sores. The usual turnover of flaky unreliable caregivers. The summer and beginning of fall were a nightmare. October I had used all my sick tie to train a new one after we had several nail. By early fall we had a good care set up and everything seemed to be settled. Fuck me for even thinking that for even a second.

The evening of November 15 around 10 pm he was acting strangely. For a few days he had been sleeping a lot. I figured it was him being stuck in bed and the weather changing. I was so wrong.
He kept repeating himself when I asked him something. What he said was not reasonable response. I got him up and into the van ready to go to the ER. Once he was up and in the van he seemed better. He was answering questions without repeating himself and was aware of what was going on. He said he didn’t want to go to the hospital. He was worried about his sores. We had made such good progress.
I got him back in bed and slept in the room with him. He was sleeping by 2:30 am. At 4 he woke up talking. I thought it was in his sleep. He was repeating itself again. “No it’s not a stroke.” I got up and tried to get him settled. He went back to sleep.
At 7 his caregiver arrived and we had a tough time waking him up. He was again repeating himself with non answers to a question. We got him up and took him to ER. A stayed with him while I went and set up for a sub, again. 11th time and it was only November.
I returned to the ER and relieved A. They did an X Ray, blood work and CT. They tried to stick him for an IV 7 times. Fortunately he was passed out for 4 attempts. He was weeping for the others. They made me change his catheter and we waited. We fucking waited. He remained confused and incoherent.
By 6 pm his dad arrived and asked a nurse what was up. She was “shocked” the Dr had not seen us and that he was being admitted for a UTI. A fucking UTI. What the fuck?!

I told him a UTI does not cause this type of behavior and I disagreed. His urine was clear and pale yellow.
He was admitted and his dad stayed with him while I went home to rest. They got him
Into a room by 10:30 Friday night.

7:45 Saturday morning I arrived to get his care started. His dad left shortly after. I did his BMP with reasonable results and we again waited. By 3 pm the Dr came. Said he has low sodium. He also has his lower left lung collapsed due to being bed ridden. They were going to raise his Na levels and give him breathing treatment to expand the lung. Sounded good. By 6pm he was still a bit confused but not nearly as bad as when he came in. I was hoping to get him a good night rest and maybe go home! When will I learn to hope for anything.
Around 8 pm his temperature went up. They got ice packs to bring it down. His Blood pressure dropped to 80/50. Around 9 I was turning him into his other side and he had trouble breathing. His oxygen saturation plummeted, his heart rate soared. I lit him back in his other side and the alarms went off for the next 4 hours. They finally changed the parameters to turn it off.
Then the hallucinations started. He kept seeing people outside the door. He was talking to Bruno and telling me to get him a table to lean on. Ann was mad the door was open. Some guy had left his arm stuck in the open door. He asked me to get someone some food. Give another a towel. This went on all night. I finally shut the door telling him it would keep him from mistaking the other alarms for his.
This went on all night. Nobody came in between 11 pm and 4 am. Lab drew blood then. His temperature was taken around 6 and it had gone up. I told his nurse then he was hallucinating all night. She said well they haven’t given him any narcotics I said I know that. She then tried to say it was from the ammonia due to constipation. Told her he had a BM and had been constipated before without this symptom. I had to stress how ABNORMAL this was. She said she would tell the Dr.
I went to get coffee, was trying to be eco conscious but fuck what a mistake. The guy looks suspiciously at me and asks where I got the cups. I said from “here, yesterday” “There are no refills you know.” WTF is wrong with people? I also asked for a muffin and he didn’t get it. Had to ask twice. Motherfucker just got to work. I had been there over 24 hours with no rest watching my child hallucinate while his condition deteriorated. Fuck you asshole.
When I returned to the room Colin was cussing out an imaginary Doctor telling me he was repeating numbers over and over. I told him it wasn’t his doctor so we could ignore him. He continued to tell nobody his name, birthday and how I take care of him. He also thinks his bandages need changing and they are going to stick something. In his abdomen.
Meanwhile staff seems to think he’s on drugs or something. No Dr has been told to my knowledge. It is currently 9:50 am. He’s mumbling to nobody beside me.
I am so afraid something has happened to him and he will never be the same . What if I’ve lost another part of my boy?
He continues talking to nothing and struggling to breath. Finally at 10:40 the Dr comes in. As soon as he hears what’s happening he says something is seriously wrong. He starts going over Colin’s chart and Colin mumbles something about his Baclofen pump. Dr states “that’s it!”. Believes the pump has infected his spinal fluid. CEREBRAL spinal fluid. Brain infection. He puts Colin on emergency status, orders a ton of tests Stat and tells me things are going to start happening. They did slowly. They tried a new IV. Nope. A pic line. That didn’t happen. Took blood, urine and ordered a lumbar puncture. His breathing became more difficult and he looked pale and distant. Could barely focus. Could hardly talk.
They took him to ICU. And here I am 6 years after the his accident in the ICU waiting room waiting for him to be intubated and get a central line. I numbly signed the consent forms telling the nurse I was aware of the possibility of pneumonia and collapsed lungs.
My little man. Such a fighter. He has endured so much these pst 6 years and never a complaint. I love my boy. I wish I could make his life easier, better. Free of more suffering. But I can’t. Right now all I can do is wait again.
I keep asking myself how did this happen? We came in for some confusion and were told low sodium. While being treated for that and his lower left lung that was not functioning he developed serious symptoms. Low BP, high HR, low oxygen, temperature and hallucinations. Night MD Respiratory Therapy and nurses knew all about the first 4 for over 12 hours. Morning MD comes in and he is declared on emergency status. His condition declines so rapidly within 3 hours (micro seconds in hospital time) He is moved to ICU and has to be put on life support. I understand he is prone to pneumonia. I would like to understood how he got it in the hospital. What I don’t understand is how under the care of a hospital staff he ends up on life support. I have brought him to the very same ER with pneumonia and he wasn’t out on life support. I want to know what the fuck happened.
Talking with Doctors I see his WBC count was low. Threw the professionals off. Still not convinced the Doctor could have been more proactive so the Hospitalist did not have to be reactive on emergency status. My boy’s life on the line. His fucking LIFE!
He stayed on Life support until Thanksgiving Day. He seemed ok at first then became unresponsive and lethargic. Hallucinating again. We told the Dr and they ordered and MRI of his head. It came back normal. While he was there he has a seizure. He was brought back and put back on life support. He wasn’t strong enough to keep his lungs clear.
He remained on the ventilator until Monday. Tuesday he was lethargic and unresponsive. Hallucinating. He was off the ventilator for 24 hours and moved to step down. He lasted 4 hours. He became completely unresponsive and couldn’t breathe. His left lung keeps killing with secretions and he can’t clear it. Third time on life support means a tracheotomy is definitive. We have a long road ahead.
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