My son Joey and his COVID-19 journey

GeorgiaXplant said:
@Aneeda72 I can't even imagine what you (and Joey!) are enduring. I admire your strength, your resolve and your sense of humor. I'd have been so frustrated at the very beginning that I'd have torn everybody involved a "new one"!

Here's hoping that Joey continues to improve and can cope with being confined to his room for such a long time.
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Thanks. @GeorgiaXplant

Yes, that is the worry. It would be hard for anyone to stay in one room for so long, but for a mentally retarded person who really doesn’t understand what is happening it must be horrific.
Luckily he has the master bedroom in the house so his own bathroom. We got him a computer and it loves it, and he has his tv with Netflix, and music player. But he can not read. He does not yet have a phone to call us. We will fix the phone issue, of course.

He does not have a hospital bed. At the hospital, the bed was set completely up so he was sitting up to sleep, as it is easier to breathe sitting up as shown in the photo. At home he will be laying down to sleep. ☹️ He also has very severe sleep apnea. There is no room in his room for a recliner or I would buy one for him.

I am really worried about his oxygen levels, the abilities of the group home personnel to care for him, and the effect of Covid on him in general. The only good thing in this nightmare, is, like so many others were, he is not locked up by himself in a hospital without family to monitor what’s happening.
 

Shero said:
Really nice to see Joey looking so good Aneeda. Bet you’re one happy but very tired Mama and I must say I admire your humor during this episode 👏👏
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Humor is all that keeps us going. I am mentally exhausted this morning. And I still have a sick daughter to worry about who just got a out of network bill for 16,000. 🤦🏻‍♀️ And she is totally freaking out. Long distance parenting of sick adult children is not to be recommended, but at least she understands her issues. @Shero
 
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Sliverfox said:
To address the lack of a hospital bed ,, can you find one of those wedge pillows?

Will the home he is in ,let you come in more often to check on him?

I suppose they aren't set up to have a family memeber stay with him?
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No we can not stay at the home and while I thought of bringing him to the apartment, I can not be awake 24/7 and the group home does have an aid awake at night. I also requested home health to send someone in to check on him. Have not heard back on that yet.

Because we are not just family, but his legal guardians, we will be able to enter the home and check on him.
 
@Aneeda72, just read through this thread. Very sorry to hear about your son and all you two have been through. You're a good mom, I know you're very stressed and weary of all this. I hope Joey continues to get better each day and can be out of serious danger. My thoughts are with you both, stay strong...hugs.
 
You must be burned out - physically & mentally. Even when Joey is being a little stubborn, you manage to get through to him. I believe you said before that he has a positive personality. It helps. Being back in his home, they know him.
 
Della said:
I think the home should provide a hospital bed. Joey would probably always benefit from one with his weight and sleep apnea problems. Now's the time to ask for one since they know they're in trouble.
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It’s not the home that provides or buys medical equipment. It’s Medicare and Medicaid insurance that would provide it. Before it could get approved, he will be over Covid. We couldn’t even get one of these beds for our total care son. When he got hurt, and sued his former group home, we used the proceeds from the lawsuit to buy him one of these beds.

Even if we footed the bill for one now, and we can’t cause we have given both our daughter and oldest son cash from the sell of the house for their issues, we couldn’t get it delivered cause he has Covid. We only had so much money ☹️.

Recently, about a month ago, the group home couldn’t get funding for a new tube and mask for his cpap machine. Instead of contacting me, they risked him dying for a 10 dollar piece of equipment. Stupid people.

Finally they sent out an email asking if Joey had enough money to pay for it himself. I immediately responded I would pay for it. It was ordered from Amazon but I was not billed as he had the money to pay for it himself. It drives me crazy!! His doctor said he had the worst case of sleep apnea she has ever seen. He risks death every time he sleeps without the machine.

The challenge was they could not get a prescription for the tube because, unknown to them, his sleep doctor retired. His regular doctor would not order the tube because he is not a sleep doctor. OMG, it’s all a shit show. (I’ve have this problem with my heart doctors. My rhythm doctor will not help with my heart failure. I have to see the pump doctor for that-meanwhile who cares if I die waiting for appointments. Not any doctors, that’s for sure.)

A lot of parents will not pay for their adult child’s medical treatment. (There are people on SF who have written, they will not financially help their adult children. I fail to understand that attitude, but not my business.). The group home could not possible absorb all these costs for all their clients.

Anyway, it is what it is. @Della
 
Jules said:
You must be burned out - physically & mentally. Even when Joey is being a little stubborn, you manage to get through to him. I believe you said before that he has a positive personality. It helps. Being back in his home, they know him.
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I am not burned out, but between him and my daughter I have a great deal of chest pain. My heart always reacts negatively to stress and it’s a lot of stress. But the angina is not fun.
 
Maybe an electric shaver would help, also some vitamins would improve how he feels, B12 for energy. Soup and fruit juice does feel good when tired

Sending Joey and Aneeda much love and healing

Treatment for post-injection inflammation
  1. Cold packs. These help reduce swelling, itching, and pain.
  2. Over-the-counter pain medicines. These help reduce pain and inflammation.
  3. Prescription medicine. These treat infections.
 
Chris21E said:
Maybe an electric shaver would help, also some vitamins would improve how he feels, B12 for energy. Soup and fruit juice does feel good when tired

Sending Joey and Aneeda much love and healing

Treatment for post-injection inflammation
  1. Cold packs. These help reduce swelling, itching, and pain.
  2. Over-the-counter pain medicines. These help reduce pain and inflammation.
  3. Prescription medicine. These treat infections.
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I am sure he does use an electric razor
 
Joey looked better yesterday at home. Got him a cell phone at Walmart will give it to him today. It should make him very happy. Got him a bed back pillow which is very soft and raises him up in the bed. He liked it really well. He does not want a bed wedge.

He will be on oxygen until November 9, when he will see his doctor and be test for Covid. That will be 21 days of isolation in his room, not 14. 14 days is for non delta, delta patients can be contagious for 21 days, despite those two vaccinations.

The staff at his group home are dressed like they work in a Covid ward all the time 😂😂.

At the hospital the staff put the gear on when they entered his room, took it off when they left. There is no negative air pressure situation like shown on tv. His last nurse was extremely heavy set. I found that strange since the doctor said the highest danger to Covid patients was weight. The PPE gown only fit around the front of her, the back of her was uncovered. She wore a mask and a plastic clear face cover, which as we all know, still gives Covid access to her eyes so it’s useless.

I wear a face mask, that’s all. I am 75, no one says perhaps I should “gear up”. That’s all the hospital required me to wear when I visited him there. If it were that dangerous I would have been required to wear the full PPE. Because when I leave, I walk through the entire hospital, get on the elevator, and ride it down, and walk out. Supposedly shedding the virus that clung to my clothes and hair with every step.

I am beginning to think the rest is “all smoke and mirrors”. How can there be one set of contagion rules for the medical staff and a different set of rules for visitors?
 
Sliverfox said:
Glad to read that things are looking better with Joey .
That the staff is finally realizing more precautions are needed.

Do you think that COVID treatment ,, care methods are still in the learning phase?
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I don’t know, but the medicine they gave him really helped and put him on the road to recovery plus the vaccines. I saw Joey this morning and he looks really good. He was up out of bed, sitting on the floor in front of his computer, and listening to music.

Such a relief, plus he had shaved and looked like he had a bath. I do think he is on the road to recovery. When my older son had Covid (not delta) it took him much longer to feel better. Of course, their were no vaccines at that time and no medicine.

There are large public service signs all over Utah which say-get vaccinated and avoid the ICU. So true for many, and true for Joey.

I bought a case of Gatorade with protein for Joey yesterday and asked the staff to make sure he drinks one, once a day. I was happy to see him sitting on the floor and drinking one. It might not help, but it can’t hurt. He said his stomach felt better as well. Also bought him a case of diet Dr Pepper. His favorite soda. He asked if o was bringing him lunch tomorrow as usual. Yup.

I read that staying hydrated is important for healing from Covid.

Told Joey he was getting a cell phone as soon as his brother came over and set it up. It’s a flip phone and I reached my limit of ability turning it on and charging it. 😂. Joey asked how long he had to stay in room and I told him 21 days, till November 9th. He asked how long he had to wear the oxygen, until November 9. I resent staff does not answer his questions.

All the guys are home. There are four including Joey and they are staying in their rooms for most of the time, although they can leave their room and go into the kitchen. The staff on duty is sitting on the sofa, dressed in all the PPE, talking on the phone to a friend. 🤦🏻‍♀️

Most of the staff now are refugees who speak little english. I dislike the not speaking English part. Oh, well, the important thing is he is MUCH better and I can relax a little bit.
 
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