OT October Chit Chat

[stillstANNding]

I hope Rose and her crew are OK. It’s unusual for her to not post something somewhere.

ANN

[agate]

She posted in this thread at 10:46 AM today though.

[Earth Mother 2 Angels]

((((((Hugs to All)))))) ~

ANN ~

Thanks for your concern. It has been a hectic week.

Jon is filled with fluid, running a temp of 100-101, heart rate in the 100s, poor urine output, etc. His right knee is swollen and hot to the touch, painful. We tried using his compression tubes on his calves, but they just pushed the fluid up to his gut.

For several days he was staying awake all night, falling asleep at 5:30-6:00 a.m. He's back to his regular schedule of falling asleep at 12:30 a.m. That's a relief for all of us.

His nurse is due to visit next week to change his catheter, and we'll discuss this situation with her.

Jim has been contending with discomfort from his two tooth extractions. I've been pureeing his food, making him smoothies, and he's been drinking Orgain shakes to keep his weight up. He sees the dentist on Monday. Then he has an infusion on Weds and sees his oncologist.

I'm very tired and worried about both of them.

Otherwise, everything is fine.

Keeping you and everyone here in my prayers.

Love & Light,



Rose

[Lazarus]

“Otherwise, everything is fine. “...that is a defining statement! Your manner of setting a view of the world that holds onto hope and joy is a great mantra for us all. Thanks.

[Sunshine]

“Otherwise, everything is fine. “...that is a defining statement! Your manner of setting a view of the world that holds onto hope and joy is a great mantra for us all. Thanks.

I couldn’t have said it better.
I wonder, can you get Jon in to see a doctor today? It might be an emergency. I am worried that the infection can quickly become systemic sepsis.

P.S. ANN, good spotting of rose.

[agate]

Thanks for checking in, Rose.

I hope John will be around soon to lend a hand--or is he away?

[Virginia]

Rose, what a nightmare that would be for all the rest of us. You just keep on keeping on which is totally amazing. You do so much. I do hope Jon will be better soon. I wish you had more help, but I know that no one knows how to take care of them like you do - especially Jon.

[agate]

That's true--that Rose is the one who knows best how to take care of them. I keep hoping she can be more in a "consultant" role though--with capable people cheerfully following her instructions as needed. These need to be people who learn to do things pretty well on their own, too--so Rose can just sit back and have a few moments to herself.

[Cherie]

Rose,
I hope you know you have a community that cares for you and supports you in thoughts and prayers if we cannot do so physically.

Contractor emailed this afternoon to say a project that was supposed to begin tomorrow has been put off for at least a week and he will be here to rebuild the dining room walls and ceiling in the morning. He is taking care of everything including steam cleaning of the carpets upstairs and down from the water and plaster dust AND he will reattach the upstairs carpet where it was pulled up to dry it AND clean and resettle the work areas. ALL of this while I am in DC this week! GOD IS GOOD!!!! There is little that stresses me more than trying to be productive with work going on around me. I gave him the numbers for the paint colors and he is even getting all of the paint to match what is there.

Bills are paid, desk is cleared, two articles written over the weekend and submitted, I am packed and in the morning just have to do laundry and head for the airport after lunch. If, for some reason, I am not responsive in the next week, it will be because the conference is so busy. Days there start about two hours before I am normally up and going and the nights are late as well so I will be picking and choosing what I really need to address if rest and sleep feel like a priority. I did go back on a half mg. of Ativan to help me sleep and will resume trying to get off it after I return home. Just can't travel and feel as poorly and sleep as crappily as I have been this past week. So...I am prioritizing....even if it does not sound like it.

[agate]

Cherie, that is truly great news that you can be elsewhere during the chaos.

[stillstANNding]

Rose, I hope Jon is better and that you do not have to go to the hospital. You have so much on your plate. I worry with and for you.

Love,
ANN

[Sunshine]

Me too, Rose, I echo ANN and Cherie.

[Virginia]

Cherie, hope you have a good trip this week. Knowing that things pertaining to the house will be taken care of while you are gone should help. We will expect to hear from you when you feel you can do it.

Rose, please think about getting some help in and as Agate said you can instruct them in what to do. I am very worried about you. Everything there depends on you maintaining your health.

[Earth Mother 2 Angels]

((((((Hugs to All)))))) ~

Thank you all so much for your love and concern.

This is not a new situation with Jon. He has these bouts of fluid build up on a regular basis. His symptoms all relate to the fluid, including his temp and heart rate. He doesn’t have an infection.

Today, his temp is normal, and he is in good spirits, alert, and chatty. His heart rate is still elevated, but his SATS are excellent. I think we pushed the fluid up too much yesterday with the compression tubes. Since we’ve removed them, the fluid in his torso is lessening.

Jon’s nurse will be here Tuesday to change Jon’s catheter. We’ll do a full assessment then.

This is a constant, never-ending battle for Jon. At this point it’s not lymphedema, according to Jon’s Physical Therapist. It’s water.

For Jon to see a doctor or go to the ER, he has to be transported by ambulance. With his fluid weight (probably 50 lbs plus), contractures in his legs, rod and pins in his right hip and no hip bone in his left hip, it’s extremely painful for Jon to be on a gurney. They are incredibly narrow, and we have to put pillows all around him to prevent his legs from falling off (even with the straps over him).

Aside from giving Jon Lasix, which the doctors avoid giving to him for a variety of reasons, including triggering seizures, there’s probably nothing that could be done for Jon beyond what we’re doing.

As for bringing in help, that’s easier said than done.

I tried to get an aide from our nursing agency to help us turn Jon on the days when John isn’t here to do that. All of the aides are female and slight in build. John and Jim have both said that they don’t think a woman (no offense to women, of course) could turn Jon without injuring herself or him. He’s not only large at 6’1” and probably over 200 lbs (with the water weight), he is also fragile. He resists turning, because it’s painful for him.

If we hired help, I would become an employer, since we are considered to be self-employed as Jon’s paid caregivers. I am vendored through a state agency, and I would be required to provide an employee (helper) with benefits, like Worker’s Comp, insurance, etc. That would be a lot of extra work for me, in addition to a reduction in our income, as I would pay the helper out of my paycheck.

Even if we could have someone here on night shift, I would still stay up, until Jon goes to sleep. I can’t sleep unless I know that he is sleeping, because the potential for a life-threatening seizure is always there.

I micromanage, because I’ve been caring for him all of his life, and even those who help us, like his nurse or John, need my instruction. They ask for it, in fact.

However, I am in the process (or will be soon) of establishing a Special Needs Trust for Jon, which will include how his care would be provided should Jim and I predecease Jon or become incapable of caring for him. Once I have a bead on that, I may be able to determine how to work in a helper to train in anticipation of the time when the need arises.

While we have our fair share of stress, we also have an abundance of joy and love to keep us strong every day. And we’re used to this. I’ve never known a stress-free life. Michael and Jon were each hospitalized 9 times before they were 2 years old. It’s just our normal.

Thank you for worrying about me. I worry about me too. I walk 2 miles every morning and pet every dog I see and chat with their owners. I climb the stairs a thousand times a day. I eat well. I take vitamins and CBD oil. I rest frequently.

We’ll be okay. It’s just one of those times, when the lulled routine gets shaken up. Again, nothing new to us.

Thank you all so much. Please know that I worry about each of you as much as you worry about us. And you’re all in our prayers.

Love & Light,



Rose

[Virginia]

Rose, thank you for taking the time to keep us informed. We do worry, but we also understand that we do not know everything you know about what is going on as far as you getting help in. As you say, at some point in time, maybe you will be able to do that and hopefully when that time comes you will find someone who is not only competent but who also will fall in love with Jon. Then you will know you have done all that you can do. It might have to be a male (rather than female) who just loves helping others.

We are always thinking of all three of you.