My son Joey and his COVID-19 journey

And so I come to this morning.

Joey calls. I can tell right away he is worst. He did not sound congested yesterday -today he does. He has a wet cough. Covid is progressing. We talk about breakfast, how he got to order what he wanted. A cheese omelette, hash browns, sausage

When am I going home? Last night he was told he had to stay overnight. Was it last night, I wonder. Already I am getting the time confused. Yesterday afternoon dad saw him. The nurse said he would be there four days or was it my older son? So stressed, I am unsure.

But no one has told him.

A few more days Joey, maybe four. You have Covid after all. He says his tummy hurts. His nurse is in the room he says. Tell her to give you more pain meds. He does. She will. I want to go home he says. I am going to die in the hospital, he says. 😱😭

No, no I say. Remember, your brother had Covid, his girlfriend had Covid, your sister had Covid, her husband had Covid, the baby had Covid -remember? None of them died. They are fine. You will be fine. And the nurse tells him she has his medicine, and we talk a little more, and I tell him I will see him this afternoon, and we hang up.

And he is not that sick, yet. But he is sicker than the others ever were. And Covid moves fast, so fast. And I wonder will I see him this afternoon? Crazy thoughts, of course I will. But, I know, how many did not. And the tears come, unbidden, again. I fight them down.

My older son texted me. This must be hard for you and dad. How are you holding up? I tell him the truth, I don’t want to talk about it-ever.

I get a text from my daughter. She got her spinal shot yesterday. She is still in extreme pain. I remind her the shot can take 7 days to work. I remind her to be sure to eat and drink. She still cannot walk. She asks about Joey. He is worst I say. 😢. And I know she is sick, and I know she is in pain, and I know she is scared, and I want to scream at her-your brother has Covid.

But she knows that. 😳. I send a message to my doctor. I tell her about Joey. I tell her I might need medication, cause, I might lose my mind.

Joey calls. The doctor wants to talk to you, when are you coming. We set a time, the doctor is in the room and confirms the time. Joey has ordered a hamburger for lunch, and chips, and a coke.

He says he is sorry he got Covid. He is sorry he scared me. He is sorry he called me late last night. 😢😢😢. Can he go home now? He missed his roommates party. He wants to go home. I explain the policy. I explain that even if he was home he has Covid. He could not go to the party.

I explain when he gets home, he has to stay in his room until he tests negative for Covid. He says he knows. Knowing is not understanding. He doesn’t understand. He has an IQ of 53. How can he possibly understand. I don’t understand.

He tells me one of his roommates has to stay in his basement room. (He might have Covid, I think.). Or maybe they all will just quarantine in their rooms. I don’t know. It’s very complicated.

What he is going through, is what any hospitalized child with Covid will go through. What I am going through is what any parent goes through. It’s unbearable.

He says he just has a little covid. I know. It’s just a little Covid. We finish our call.
 
We are on the way to the hospital when Joey calls again. Are you coming? Yes. Doctor wants to talk to you-yes. We are on the way now, we will stop and grab lunch, and then we are there. How long he asks. Half an hour I say. You are taking forever, he says.

Are you having lunch, I ask. Yes, he says. Hamburger. Well, I need lunch as well. Ok he says. We get to the hospital, husband waits in car. I go upstairs. Husband tells me what room he is in. (Oh, it was my husband that went yesterday afternoon as the memory pops up. I also remember now that older son asked for his room number so he could call later.)

Older son wants to go and stay with him in the evening which means we could not see him in the afternoon. I refuse to let him. In fact, I am now rethinking letting my husband go today. Anyway, more on that later.

I get to the nursing station, get the new Advance Directive form. (I have not yet filled it out. I’ve picked it up several times, looked at it, not filled it out 🤦🏻‍♀️). Go into his room, he is finishing lunch. His oxygen is off. He thought this was good news. Said on the phone it was off, he is better. I tell him probably not. Told him they were testing his ability to breathe on room air.

He says I am not his doctor. No, I agree, I am not. But, oh well, I drop it. He will see. His oxygen alarm goes off several times. It goes as low as 84. Doctor comes in, he is very nice, very patient. We talk for half an hour and never once does the doctor look at his watch or act like he’d like to leave.
 
I ask about the monoclonal antibodies-too late for those. Must be given before Covid reaches this stage, usually in the first day or two.

Do you know how long he’s had Covid? No, he replies. No way to tell. But his inflammation markers were low on his blood test yesterday. Because of that he can have remdesivir, an anti viral, which will help at this stage. Later on, when the inflammation markers are higher we still give this drug but it is not as effective. Apparently, these markers help indicate how bad Covid is.

Do you know what’s wrong with his stomach? (He has severe pain in stomach and has received IV morphine for it beginning in the ER.) Covid is causing the stomach pain, he has changes in his stomach consistent with Covid. 😮. I don’t ask what changes. I probably would not understand the answer.

He seems sicker today. Yes, the doctor replies. That is the normal progression of Covid. His oxygen alarm goes off. Doctor says, let’s put that back on, ok? Joey reluctantly Agrees. The doctor explains his oxygen is off for meals, to make it easier for him to eat and drink. They will assess him Friday for his ability to go home. He will a new blood test-today-for those markers.

I ask about his heart. The cyst they found is not urgent. The ultrasound was showed his heart function was ok. The cyst will be assessed after Covid is over. Will he have/get long Covid, I ask. Probably not. Most patients who are vaccinated and get Covid, do not get long Covid. (Nothing is a 100% of course.)

What kind of Covid does he have? Since 90% of the Covid in Utah is delta, is am pretty sure he has delta. We do not test everyone for the variety. (I explained to the doctor how two of Joey friends at the shelter workshop have Covid. It is certain that Joey got Covid from Erika, a girl friend. I learned the afternoon of the evening that Joey got sick, from Joey, that Erika was home sick, for a week, with Covid.

Joey also says her parents have Covid. I learn from the director of the group homes, earlier, that the director learned today that the sheltered workshop is shutting down for two weeks due to the Covid spread. It spread like wild fire in that disabled population although every single person there has had two vaccinations and wears mask.)

I relay this information to the doctor. Yes, he says, that is delta. If they had not been vaccinated, they would probably die. Joey’s friend Erika, who has Down’s syndrome as well, does not need hospitalization. Her parents also have Covid.

Our conversation continues. Joey became very overweight during the Covid lockdown-this is a huge risk factor for him. Having Down’s syndrome is another risk factor but the weight is the biggest issue. It can not be known just how sick he will get. It is a waiting game.

We discuss my doing a DNI. He agrees-there is no way to know how someone will do on the “tube”. How long they will be on it, how much damage will occur because of it.
I thank him and he leaves. Joey looks very tired.

I discuss with Joey how he is drinking a coke, not a Diet Coke. He smiles and takes a drink. 🤦🏻‍♀️ He has Covid, I tell myself, let him have the dang coke. I tell him it’s ok in the hospital but once home, it’s back to diet. And once he is well, and he will hate me for this, the human rights paperwork will be filed and he will go on a strict diet to lose weight.

The doctor has said that people who have been vaccinated and had Covid have a strengthened immune system. This is pretty much common knowledge as far as I know. The doctor says a new study, unpublished as yet from Israel, confirms what we all have assumed. But he will still need the booster.

Joey is tied. I go home. I get no more calls. I do not call him as he will call me if he needs anything or wants to talk. In addition, the group home people call him, his brother calls him, and the doctor wants him to sleep and nap and rest as much as possible.

Besides I know how he is. He is sick.
 
My rambling thoughts.

The hospital situation is strange. The doctor is in PPE, a lightweight paper covering of his clothes, yellow. I have not seen a nurse yet. The doctor wears the “bubble mask” with tubing for clean air.

Joey is unmasked in his room. Coughing up a lung usually.

I am in the room. I could have a yellow paper cover if wanted, but I see no point. I wear my clothes out in the community, soaking up the virus wherever it is. I see no point in wearing the paper gown in his room.

I wear a KN95 mask. (I think that’s what it’s called, too lazy to look). No bubble head wear for me or any other visitor to a Covid patient. One visitor a day is allowed. I stay a half an hour. Joey has the delta variety of Covid. So I am exposed to the delta virus, the entire time I am in the room, as is any other visitor who sees their family member with Covid.

The hospital does not give an information sheet on your risk of catching the virus, if you should stay so many feet away from the patient, or any info at all. There are no hints on if you should quarantine after these visits, or go home and change, or go across the parking lot and shop at the local Costco. Strange.

You are supposed to be vaccinated, but no one asks for proof. The only requirement is wear a mask, any mask. Strange. I had the booster a week ago today. I am all set on vaccine.

I call my doctor to reschedule an appointment, explain the situation, and the stupid receptionist says I need a Covid test before I reschedule. What? I don’t have Covid, I just saw him for a half hour in a hospital. A Covid test will be negative, it doesn’t show up in half an hour. I can’t tolerate stupid people. I give up on the appointment. I am not getting an appointment. I do not care.

I think of the many people, hunkered down in their houses still, and here I am choosing to expose myself every day to the most catchable Covid virus known; just to see my son for 30 minutes. Even though he once again has a fever. I am not worried. I am not afraid. It is worth the risk.

You either get the virus or you don’t.

But I decide not to let my husband visit for a variety of reasons. He has no problem with not going. Yeah, I knew he wouldn’t have a problem not going. My oldest son really really wants to go sit with his brother. He makes the case that he eats out a lot and if he catches the virus, he could of got it anywhere, like before. Nope. I have to have at least one child I don’t need to worry about.
 
Good news, kinda of. Joey has been released from the hospital and has just now gotten home. He was sent home with active Covid, of course, and on 2 liters of O2. The usual shit show happened.

No one told Joey he was being discharged. 🤦🏻‍♀️ When I told him, he wanted to talk to the doctor, 😂, cause I was not the doctor and he decided he was not well enough to leave. 😂. Shortly after I had left, doctor called, said she spoke to Joey and he agreed to leave.

I was called, later, cause the assistant director did not leave his phone number. I gave the hospital his number, texted him that Joey was being discharged, and emailed the whole group to ensure everyone knew Joey as leaving.

To be continued:
 
Oh that really is good news, I'm sure the doctor wouldn't be releasing him if she didn't feel he was pretty much out of danger. He will probably sleep a lot for the next week or two while he recovers and his own bed is the best place for that.

I hope you can sleep now, too, Aneeda, and that the worst is over.
Praying for you and Joey.
 
Oh that really is good news, I'm sure the doctor wouldn't be releasing him if she didn't feel he was pretty much out of danger. He will probably sleep a lot for the next week or two while he recovers and his own bed is the best place for that.

I hope you can sleep now, too, Aneeda, and that the worst is over.
Praying for you and Joey.
Yes and no.

When the hospital can no longer do anything for the Covid patients they are released to home on oxygen. But we have all heard stories of many of these people sent home dying. Covid can still go very bad, very quick.

He has an oxygen monitor on that tracks his levels at the hospital. But, we do not know who responses if he gets into trouble. We have yet to find that out. And the group home people are, well, not exactly able to cope. I consider the assistant director down right stupid.

He sent me a text explaining how they have a box of PPE items, and start will wear complete gear, amd cleaning supplies for the house etc. and how this was. 🤦🏻‍♀️ I replied, yes, great for all of you, too late for Joey. What an idiot.

How did you know I have not slept? 😉. @Della I am still very worried. ☹️
 
Then I get a call from home health care, they also do not have the director’s number. 🤦🏻‍♀️ Or joeys address, or where to deliver the oxygen that he needs. OMG. So I text the director, again, after giving them all the information. The oxygen delivery finally gets set up.

The associate director picks Joey up from the hospital, takes him home, finally responds to the calls and everything is fine, finally. Then I get a text from this idiot. Do I have Joeys glasses. Nope, why would I? Yup the idiot left Joeys glasses at the hospital. The hospital can’t find them. Ugh, just ugh.
 
Joey, I am sure, is happy to be home. I am also sure he does not understand what being in his room for a minimum of 14 days mean. Although, the hospital recommends 21 days as you can shed the delta virus, apparently, for 21 one days.

But wait.

What happened to if I am vaccinated, and you are vaccinated, and one of us gets Covid, we can not give it to each other. Well, that works with the other varieties. Doesn’t work with Delta. Thus all the PPE delivered to the group home to protect everyone else, who by the way, have already been exposed via the sheltered workshop and Joey.

There is also another major problem. If you are vaccinated, you may not show symptoms. Since you don’t show early symptoms, you shed and spread the Delta virus like a firehose. This is how all those disabled adults in the sheltered workshop caught Covid.

Then, due to the privacy acts which effects all those disabled adults, no one was informed that some clients had Covid. When Erika stayed home because of Covid, the group home was not notified cause Erika lives at home with her parents.

When Joey asked where Erika was, he learned, the day before he fell ill, that she was home with Covid. He told me. I told the paramedics of the exposure. The next day I told the head group home director about Erika. This was the first time she heard there was an issue at the workshop.

Erika really likes Joey. Erika gave Joey Covid. That day, the morning Joey got sick and I texted everyone in the world. The workshop closed for two weeks due to the massive amount of Covid infections.

And then the real shit show began.
 
Then I get a call from home health care, they also do not have the director’s number. 🤦🏻‍♀️ Or joeys address, or where to deliver the oxygen that he needs. OMG. So I text the director, again, after giving them all the information. The oxygen delivery finally gets set up.

The associate director picks Joey up from the hospital, takes him home, finally responds to the calls and everything is fine, finally. Then I get a text from this idiot. Do I have Joeys glasses. Nope, why would I? Yup the idiot left Joeys glasses at the hospital. The hospital can’t find them. Ugh, just ugh.

How frustrating it must be for you, prayers sent your way.🙏🙏🙏 Stay strong and keep on talking about it, we are all here for you.
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All those clients who live in groups homes go to sheltered workshop during the day. Now the workshop is closed and the clients are home for two weeks. When the clients are at workshop, no one staffs the groups homes. Now staffing has to be found to care for all the clients in the group homes who are now, well, home.

All those disabled adults have the right of refusal. Which means they can refuse to be tested for Covid, so unless they get really sick, like Joey, no one knows how many clients are sick and how many clients are still spreading the disease in the group homes, and elsewhere.

Plus, if any of the employees quit, because of Covid worries, then there is no staff to care for all those clients. Any clients with Covid, have to be contained and not all clients are as cooperative as Joey. Shit show.

Not to mention the contract tracing for all these people who have been out into the community, with their families, working at jobs in the community etc. and everything reported to the county. It’s an endless nightmare.

I learn all this endless crap because the director is trying to explain how short staffed they are, how they didn’t know about the Covid at the workplace, and how sorry they are that Joey was not taken care of for those four hours.

Ok, got it. And as 🤬🤬🤬 as I am, and I am mad, I get it. I am not going to report them to licensing or this other place cause it seems they now have enough of an issue without my making it worst. And it seems that everything that could go wrong, and shouldn’t have gone wrong, went wrong.

But, as we all know, shit happens.

I do not blame them, or anyone, for Joey catching Covid and I tell them so. It’s a virus. I do blame them for the continuing incompetence displayed by the associate director of Joey’s group home. But I keep my mouth shut on this. Everyone knows every place is short staffed and all work places must take who they can get. (Heck, even I might be able to get a job 😂)

But Joey doesn’t understand what staying in his room will mean. Especially no phone access, to do daily phone calls to mom. 😳😱. After a long conversation with our oldest son, tomorrow we go to Walmart and purchase a burner phone for Joey, so, if he chooses, he can start a life of crime. 😂😂

Our oldest son assured us we can do this. He assures us Joey can be taught how to use a phone with buttons as he uses a phone with buttons at his house. I am not so sure that we can get the right phone. We will see. I am sure Joey can learn to use a simple cell phone, if not, the staff can help.

Meanwhile, hopefully, Joey will keep his oxygen on, stay on his room, rest, continue to heal, and survive Covid. We will go to the group home every day to check on him, phone or no phone.
 
He was really tired today when I was there. His fever had broke, his oxygen intake was better, but he still is very pale, his stomach still hurts, and he feels terrible. He wants to shave when he gets home and he needs to wash his hair. I hope they help him. I doubt he is steady enough to shave on his own.
 

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