When Jim woke up, groggy and getting his bearings, I gave him a few minutes. I opened the shutters to the gorgeous, sunny day. He told me that he was feeling pretty good.
I said, "Well ..."
Jim replied, "Good News?"
"Yes! Yes! Yes!"
Big Hug! Big Kiss!
I read the pertinent results to him, and his smile melted my heart. "Looks like I'm not fully cooked yet."
He hasn't taken Lasix for 3 days, but his urine output would embarrass a Triple Crown Winner. It's absolutely clear. No pain during urination, but it is voluminous. Could 3 doses of Augmenten still be working? Because he has missed 3 doses to allow his gut to settle.
My instinct tells me not to give Jim Lasix, in case he becomes dehydrated. Augmenten is something that I'm weighing carefully. Jim cannot afford to lose any more weight. He was only able to eat a small amount of oatmeal, applesauce and blueberries today. His belly is full, but it also fluctuates, depending upon his output. We can't even contemplate going to the hospital for drainage now.
Flying by the seat of my pants now ...
I am continuously thinking about everything ... "what am I going to do about this?" "what's the best solution for this?" "how am I going to get this blasted plumbing done?"
Oh, and yes ... there's a pandemic. A deadly pandemic. Rapidly spreading around the world. More people are dying. The numbers drastically increase every day. People are self-isolating, social distancing, and going bonkers after only 2 weeks of doing so. Italian mayors are screaming on videos to their citizens to stay home. They are cursing and threatening to send in the police with flame throwers to disburse crowds.
And while many people are distressed that they can't get toilet paper, health care workers, doctors, nurses, aides, therapists, phlebotomists, pharmacists, home health nurses, EMTs, administrative staff, are on the front lines battling COVID-19 without proper masks, gowns, gloves. They are forced to reuse masks between patients. Some are cutting up large trash bags to put over their scrubs, because they have no gowns.
Not enough ICU beds, ventilators, other necessary supplies and treatments. They are putting their lives on the line, and the lives of their families, when they go home after their shift. Those are the heroes in this crisis. Let's all honor them and pray for them. They are the soldiers on the battlefield fighting the COVID-19 war, without sufficient armament to do so.
We send you our love and prayers, and we thank you so much for your love, prayers and support. We're here for you, as you are here for us.
We are all in this together. The huge and the not so big and everything in between.
Be Safe. Be Well. Send Love and Prayers Around the World.
Love & Light,
Rose
*Virtual Hugs Are Germ-Free!
Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.
Rose, So glad to hear some good news! So glad you don't have to go to any medical facility for now.
NY coronavirus numbers as of last night were 44,000. Mostly in NYC but growing around the state. When I start to panic I really try to think of positive things and calm myself. Yesterday was a beautiful sunny day so getting outside was helpful but the next few days are going to be raining. Praying for everyone to get through this safely and as quickly as possible. Sending you back a virtual germ free hug!
Mary Grace
How frightening for you all with that many cases in New York. Your Governor seems to be on the front lines, and I just pray that you get all of the things you need to bring this under control.
I'm sorry that rain is in your forecast, because I know how helpful it is to get outside. We've had quite a bit of rain in the past week or so, which is great for the state, but it does put the kibosh on outdoor activities. I don't walk in the rain or on wet sidewalks, as I fear slipping and falling. And I miss it. So, I really understand what you mean. Blue skies ahead for you, I pray.
Thank you for your virtual hug! We may have reached a point in our Earthly genetic journey, where hugs, handshakes, and close embraces will no longer be safe for us. That is heartbreaking, because a hug is the most wonderful way to express love filled with comfort. Where I have always handed out hugs freely, I now shun them. It's so difficult to see Nancy and not hug her. And we haven't seen John, and that would be difficult not to hug him.
As my mind often takes a path I'd prefer not to travel, I have contemplated Jonathan's First Angelversary with the recognition that we have not been able to have a service to celebrate his life. Then my mind wanders down the path of losing Jim, and a celebration of life for him. When, if ever, will I be able to gather our loved ones together to honor Jonathan and Jim? Any attempt would have to be via internet. This makes me sad, of course. I will miss the hugs of everyone, who loves us.
We hold your family close in prayer, Mary Grace. Stay strong and be well.
CHANGES
After 24 years of vegetarianism, Jim has now decided that he wants to eat roast chicken to help him fatten up. Because Jim has serious digestive issues, I fear him introducing poultry after such a long hiatus. But he is adamant that he wants an organic roasted chicken.
I am not really on board with this, but Jim insists. So, I asked John if he could find a roasted organic chicken, as he is still working as a rep for a large distributor, which means that he's in different grocery stores every day assessing their needs for stock. John is considered an essential worker and is receiving hazard pay. John will get whatever Jim wants, of course, but Jim will have to wait until Monday at least, and he needs to be prepared to find out that none of the stores have chicken.
Jim also wants fish. "I'll start with kippers for breakfast." I had to remind him that we're not living in the U.K. currently. Also, no fish for 24 years, and a bad digestive system says to me "let's not push the envelope." And ... mercury. Fish isn't safe for anyone any longer. Things have changed so much, but Jim is reveling in the past.
Unfortunately, I am a hard and fast vegetarian, so the thought of handling, cooking and slicing any animal is repulsive to me. I explained this to Jim, and he understood. So, John is looking for a cooked roasted chicken. I will still have to chop it and slice it. I am dreading that and Jim's response to chicken after 24 years.
Nancy told me to feed him whatever he wants. Even if it makes him more ill and unable to eat for days afterward? What is the point in that? He has pleasure for a moment and pain for days.
Tonight, I'm getting as close to chicken as I can. He's having egg salad on lettuce and other safe veggies.
COMPUTER SCARE!
While we were in the processing of changing britches and lifting up in the bed last night, we had a sudden electrical outage. It lasted a minute or so, before electricity was restored. The mattress was deflating under Jim rapidly. Light were off. I freaked. Jim told me to calm down.
I don't know how to hook up our generator, nor does John. Jim can't lay in a deflated mattress, just as Jon couldn't. You might be shocked by how many images can run through your brain during a potential crisis onset.
Thankfully, power returned, the bed reinflated, and I changed the clocks on the stove and microwave.
Then, I walked upstairs to the computer with trepidation. I haven't shut down the computer since September 2019, because at that time, I was afraid that it wouldn't ever return. I put the computer to "sleep," but I never shut down.
The power outage shut down the computer, which I turned on with hope. I got the apple, the spinning gear, then a white page, then a black page. I sat in front of the computer, stressed and tearful. I thought about the iPad and how I need to learn it more efficiently. I also checked the iPad to discover that it had 6% power left. Plugged it in and recharged it, anticipating the worst.
While Jim slept, I anticipated not having access to my big monitor, all of my bookmarks and favorites, etc. I knew that this would make life more challenging for me. Shaking my head, wondering why everything is happening all at once now. There is no break from stress of any kind now. Why?
After a couple of hours of a black screen, I finally retreated to bed. I was prepared to rely on the iPad, because I have no other choice. Jim said, "Just buy another computer!" He has forgotten how complicated it was to install every computer we've had (and there have been many).
Our iMac is too heavy for me to lift, and I couldn't lift and carry a new one upstairs. I have to get on the floor under the desk to unhook the old and hook up the new. I'm not in the right physical shape to do that. And John would do this, but we have to "social distance" from him, as he's on the front lines.
This morning, decaf in hand, I turned on the computer, and there was my sign-in page! It's back! It's back! IT'S BACK!!!!!
I don't know why we had an outage, why I had to stress over the computer, the iPad, chicken, fish, et al. But the fact that my beloved old computer is still working for me after being shut down is a blessing. Otherwise, you would have read two sentences as a reply, because the iPad is time consuming.
Now, I'm off to make egg salad. I will not think about the chicken until it arrives. Don't count your chicken before the eggs hatch, as my mom used to say.
And never forget: A bird in the hand is worth two in the bush.
My mom was the Queen of Cliches.
We thank you all for your love and prayers and continuing support. We pray for you and your loved ones to be safe, well, filled with peace, calm, and love.
We have each other. We are not alone.
Love & Light,
Rose
*Virtual Hugs Are Germ-Free!
Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.
I just posted a new thread on the MS Forum, because it is the most active forum on BrainTalk. But, I want to ensure that everyone here on CN sees the thread too, so here is the link:
I posted links to two YouTube video Interviews with two experts on COVID-19, Dr. Fauci and Dr. Kass. Extremely valuable information about the virus, symptoms, treatment, and more. Please click on the link above, then, click on the links to the videos. It is well worth the time.
The only way to be safe is to be informed.
JIM'S UPDATE
Jim and I are conflicted about restarting Augmenten, because it nauseates him and takes away his appetite. He wants and needs to eat. John is on a search tomorrow for a roasted chicken ( UGH!). If we get a chicken, and Jim isn't interested in eating it, well, that will be quite unfortunate.
His urine output has been voluminous, but Nancy says that is from the infection. And today, he had traces of blood in his output on the briefs pad. So, here we go again with anemia, because of a UTI.
His gut is also expanding, so I want him to go back on Lasix.
Conflicted on all counts. So, I'll be writing to Dr. K and asking for his guidance. If he says Macrobid, I may scream, and no matter where you live, you'll probably hear me.
PLUMBING
I haven't done anything about the plumbing problems. There just isn't any way we can get it done, with Jim sleeping throughout the mornings and afternoon. If our plumbers would work from midnight to 5 a.m., that would be different.
The work involves the ceiling of Jon's closet, where Jim is. What do we do if Jim needs a BM, while they are in the closet working? Or if we have to change his britches, and clothes, and so forth. This is all intimate care. While we love our plumber family, Dad, sons, and other relatives, some things are PRIVATE! And they aren't going to want to be in there during these times.
Moreover, I have to remove everything from the closet for them to access the ceiling and to protect everything in the closet from whatever disaster may happen. Unless I work from midnight to 5 a.m., that isn't going to happen any time soon. And those, by the way, are the hours I'm on the futon, with the phone beside me waiting for Jim's page, my heating pad on my back, praying, and trying to rest and sleep. So, yeah, that isn't a really good time for me to be evacuating everything from Jon's closet. I mean it is stuffed to the brim. Literally. Floor to ceiling.
CHICKEN!
On top of all of this, Jim wants to eat chicken!
I didn't tell Jim this, but John texted that he and family were getting El Pollo Loco for dinner and wanted to know whether Jim would like a couple of pieces of chicken. I texted him explaining that Jim can't tolerate spices or tomato or acidic stuff. I thanked him for his generous offer, and I reminded him how much we love and appreciate him.
In the early 90s, before Michael and Jonathan began declining, and before we became vegetarians, El Pollo Loco bowls were one of our favorite take out foods. Much healthier than Taco Bell or KFC. Tomatoes, lettuce, avocado, olives, cheese, salsa, and broiled chicken with a pleasant dressing.
I just didn't want to tempt Jim with that notion. He will not be able to tolerate that. I guarantee it. Nope. Not gonna happen, and it is best that he has no idea John and I discussed it.
ENTERTAINMENT
Jim and I have watched some very good movies. However, either he or I fall asleep in the middle of them. For me, being on Jon's chairbed has always been and remains uncomfortable. Yet, I cave into exhaustion and sleep.
Jim told me last night that he feels safe, when I am near him. And just watching me sleep and rest made him feel better. He knows that I get "all stove up" after an hour or more on the chairbed, and he feels sorry for me. I work out the knots eventually. I'm used to this. The chairbed was my perch for Jonathan, and now it is my perch for Jim.
Yesterday afternoon, I watched a TCM movie for an hour and a half, on the chairbed, while I waited for Jim to wake up. During that time, I found myself nodding off, and waking up, so I could be present for Jim.
Today, I treated him to a video of a Scottish sports broadcaster trying to fill in the gap of "lack of any sports anywhere." He has two dogs, and he announces their mealtime call. It's adorable:
OUR LOVE AND GRATITUDE TO ALL. BE WELL AND BE SAFE. OUR PRAYERS ARE WITH YOU AND YOUR LOVED ONES.
Love & Light,
Rose
*Virtual Hugs Are Germ-Free!
Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.
Originally posted by Earth Mother 2 AngelsView Post
((((((Hugs to All))))))* ~
I just posted a new thread on the MS Forum, because it is the most active forum on BrainTalk. But, I want to ensure that everyone here on CN sees the thread too, so here is the link:
I posted links to two YouTube video Interviews with two experts on COVID-19, Dr. Fauci and Dr. Kass. Extremely valuable information about the virus, symptoms, treatment, and more. Please click on the link above, then, click on the links to the videos. It is well worth the time.
The only way to be safe is to be informed.
JIM'S UPDATE
Jim and I are conflicted about restarting Augmenten, because it nauseates him and takes away his appetite. He wants and needs to eat. John is on a search tomorrow for a roasted chicken ( UGH!). If we get a chicken, and Jim isn't interested in eating it, well, that will be quite unfortunate.
His urine output has been voluminous, but Nancy says that is from the infection. And today, he had traces of blood in his output on the briefs pad. So, here we go again with anemia, because of a UTI.
His gut is also expanding, so I want him to go back on Lasix.
Conflicted on all counts. So, I'll be writing to Dr. K and asking for his guidance. If he says Macrobid, I may scream, and no matter where you live, you'll probably hear me.
PLUMBING
I haven't done anything about the plumbing problems. There just isn't any way we can get it done, with Jim sleeping throughout the mornings and afternoon. If our plumbers would work from midnight to 5 a.m., that would be different.
The work involves the ceiling of Jon's closet, where Jim is. What do we do if Jim needs a BM, while they are in the closet working? Or if we have to change his britches, and clothes, and so forth. This is all intimate care. While we love our plumber family, Dad, sons, and other relatives, some things are PRIVATE! And they aren't going to want to be in there during these times.
Moreover, I have to remove everything from the closet for them to access the ceiling and to protect everything in the closet from whatever disaster may happen. Unless I work from midnight to 5 a.m., that isn't going to happen any time soon. And those, by the way, are the hours I'm on the futon, with the phone beside me waiting for Jim's page, my heating pad on my back, praying, and trying to rest and sleep. So, yeah, that isn't a really good time for me to be evacuating everything from Jon's closet. I mean it is stuffed to the brim. Literally. Floor to ceiling.
CHICKEN!
On top of all of this, Jim wants to eat chicken!
I didn't tell Jim this, but John texted that he and family were getting El Pollo Loco for dinner and wanted to know whether Jim would like a couple of pieces of chicken. I texted him explaining that Jim can't tolerate spices or tomato or acidic stuff. I thanked him for his generous offer, and I reminded him how much we love and appreciate him.
In the early 90s, before Michael and Jonathan began declining, and before we became vegetarians, El Pollo Loco bowls were one of our favorite take out foods. Much healthier than Taco Bell or KFC. Tomatoes, lettuce, avocado, olives, cheese, salsa, and broiled chicken with a pleasant dressing.
I just didn't want to tempt Jim with that notion. He will not be able to tolerate that. I guarantee it. Nope. Not gonna happen, and it is best that he has no idea John and I discussed it.
ENTERTAINMENT
Jim and I have watched some very good movies. However, either he or I fall asleep in the middle of them. For me, being on Jon's chairbed has always been and remains uncomfortable. Yet, I cave into exhaustion and sleep.
Jim told me last night that he feels safe, when I am near him. And just watching me sleep and rest made him feel better. He knows that I get "all stove up" after an hour or more on the chairbed, and he feels sorry for me. I work out the knots eventually. I'm used to this. The chairbed was my perch for Jonathan, and now it is my perch for Jim.
Yesterday afternoon, I watched a TCM movie for an hour and a half, on the chairbed, while I waited for Jim to wake up. During that time, I found myself nodding off, and waking up, so I could be present for Jim.
Today, I treated him to a video of a Scottish sports broadcaster trying to fill in the gap of "lack of any sports anywhere." He has two dogs, and he announces their mealtime call. It's adorable:
OUR LOVE AND GRATITUDE TO ALL. BE WELL AND BE SAFE. OUR PRAYERS ARE WITH YOU AND YOUR LOVED ONES.
Love & Light,
Rose
*Virtual Hugs Are Germ-Free!
Hi Rose,
Thanks for the COVID19 info. Re: Chicken. Chicken when it is by itself is one of the blandest, easiest meats to have digested which is why vets put dogs on chicken and rice diets when they have GI upsets. Turkey is also pretty easy on the stomach. Try small pieces of Chicken without seasoning, or chicken soup cans without any salt. If he reacts badly you just stop, but the higher protein might be just what the Dr ordered. No fish though IMHO. Fish is harder on the system.
Re: Computer. Glad your old computer turned on again! You still have the Time Machine backup yes? If worse comes to worse, here’s what I did: I ordered a laptop from home shopping, called Apple to install via phone, and plugged my old ethernet cable into one of the plugs on the side of the laptop, to avoid wifi use. Laptops are easier, Apple just helps you with Time Machine and passwords. That’s it if I remember correctly via phone. Definitely get to know the iPad well in case the other one fails.
Re: Mr Rogers. Yes. I didn’t realize the scene with the cop was so significant as a kid.
As for me I seem to have been forgiven for my bad digital communication. Perfectly healthy and getting into a routine with online work.
Today, John delivered rotisserie chicken to our front porch. It is not organic, so we don’t know how it was raised, fed, or whether it was given antibiotics. We don’t even know the name of the product, as it’s in a plastic carry bag, which is also microwavable.
He also brought us carrots, which are not organic, and we don’t know what pesticides might have been used on them or where they were grown.
I wasn’t happy, as I wiped down the bag of chicken with a Lysol wipe (wearing gloves) in the garage.
As Jim slept all day, I worried about him eating this chicken. When he woke up and was sorted out, I brought the bag of chicken in to tell him about it. He was crestfallen.
John doesn’t service the groceries, where we buy most of our organic products, so he got what he could find. Unfortunately, Jim will not be eating it. And, I will have to explain to John why organic food is so important to us, and it works, as evidenced by the fact that we’re both still here.
I attempted to assure Jim that I would endeavor to find him organic chicken on Instacart with our favorite small franchise store, specializing in healthy foods.
I found several organic chicken options, including deli sliced, so I don’t have to handle the chicken. Yeah, I know it sounds strange to people, who aren’t vegetarians, but seeing that poor small chicken in that bag broke my heart. I know the kind of conditions these chickens experience, and it’s horrible. And I am loathe to chop it apart. I just can’t do that.
But I am doing this for Jim, so whatever I must do, I will do.
I collected up more items with hope that some would still be in stock by the time I could get a delivery.
Well, no times are available for delivery at all. Instacart shoppers went on strike today. Grocery stores have changed their hours. Probably most of the items I have on my list are not now or will not be in stock by the time delivery dates are reinstated.
I checked for “pick up” times, and every pick up location is 20-35 miles from our home.
Next option: I drive 25 minutes from our home, go into the store, shop, load/unload groceries, sterilize them, put them away, and start cooking. That leaves Jim unattended for nearly 2 hours.
Obviously, I cannot do that.
As I explained in today’s email to Dr. K, who encouraged me to get more nutrition into Jim, I’m doing the best I can during a pandemic! Maybe he isn’t experiencing hardship, but we are.
UTI OPTION
Dr. K ordered Ceftin, a cephlasporin, eg, Keflex), for the UTI. It has the same side effects of Augmenten, nausea, vomiting, diarrhea. Hey, thanks for the options, doc! He lost weight on Augmenten because he had nausea, vomiting and diarrhea. So let’s just keep up on that track, eh?
Then, Dr. K tells me to give him Ensure or Boost, when I’ve told him repeatedly that Jim drinks Orgain. Like it’s my fault that Jim isn’t getting his protein.
If we could resolve this blasted UTI, without depleting Jim of his appetite or ability to benefit from the food he takes in, then Jim could start gaining weight.
I don’t think this is cancer, but who knows? To me this is a UTI, which responded well to Amoxicillin, but returned, and responded well to Augmenten, but caused Jim to lose his appetite, hence, weight.
How do we win this battle?
We pray for all of you to be well and safe during this pandemic and beyond. Wash your hands, don’t touch your face, stay in your home, save lives, including your own. We love you!
Love & Light,
Rose
*Virtual Hugs Are Germ-Free!
Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.
I was so wrapped up in the chicken saga, I missed your posts!
agate ~
Thank you for your suggestion.
COMMODE/PLUMBING
A bedside commode is not possible for Jim, as he can no longer bear weight or walk. I fear falling, and I'm not strong enough to lift or help him. He wanted to try one, but when I pointed out the dangers due to his lack of mobility, the idea was kiboshed.
The problem is that the plumbers have to access Jonathan's closet. Now that Jim is using Jon's room, that will be intrusive for Jim's intimate care needs, like changing his britches frequently after he urinates. Additionally, Jim will be exposed to whatever repairs must be made in the ceiling. I envision a lot of dust from removing and replacing the ceiling dry wall.
It's impractical in every respect, including the fact that Jim sleeps most of the day.
funnylegs4 ~
CHICKEN
Thank you for your thoughts on the digestibility of chicken. While that's likely true for folks, who regularly eat chicken, Jim hasn't had chicken or any kind of meat, fish or poultry for 24 years. He also has pre-existing digestive issues, including heartburn, indigestion, and reflux, which he gets after he eats just about anything now.
I told him this afternoon that if he has any kind of digestive problems with chicken that he will have to give it up immediately. Depending upon his level of discomfort, he'll probably agree with me. All of the meals he loves, I can't make any longer, because he can't tolerate the food. Indian, Mexican, Italian, Greek ~ he can't handle any of them.
I ordered Branston pickle and Picallily (British condiments) for his sandwiches last year. He was thrilled. Branston and cheese. Picallily and veggie ham. No more.
This morning, he ate 1 1/2 slices of honey wheat organic bread with orange marmalade. He enjoyed it, but later he had indigestion and took one Tums.
So, I'm just imagining how his body is going to react to chicken.
I brought in Orgain today, and he thanked me, but he hasn't opened it yet. I continue to encourage him that this is what he needs to fill in the nutritional gaps and help him get stronger. He agrees and asks me for a cup of tea.
The Ascites is a huge factor in how much he can manage at a time. With COVID-19, we simply cannot go to the hospital now for drainage.
I want to get him back on Lasix, but I wanted to start him on Ceftin/Keflex first today. The pharmacist today suggested that he take it with food, and I agreed. But I didn't have it yet, when he ate the toast, and he's been sleeping and wanting a BM all day and not eating.
Per his request, I microwaved a huge russet potato to slice and saute in ghee. With that he wants an egg over easy. I've been waiting since 10 a.m. to fulfill that request.
If Dr. K knew what I go through every day trying to feed Jim, he would have more appreciation for how difficult it is. Maybe then he'd stop nagging me about feeding him better and getting more nutrition in him. Unless he gets a G Tube (he won't) or has TPN (he won't), I'm doing all that can be done.
COMPUTER
Thank you for reassuring me that all will not be lost, if our computer says "Adios!" Which laptop did you purchase? So I can use an Apple laptop with my ethernet modem, and get Apple on line to help me install my back up from this computer? Really?! Oh, that's great!
The window on the left upper corner of the computer reminds me that as of today, it has been 201 days since my last back up. Hmm... I wonder what I've been doing for the last 201 days?
I've got my notes somewhere, but I can't really remember what to do now. Every day is crisis management for me, and I'm getting really old really quickly.
I am trying to use the iPad more. When Jim's awake I share YouTube videos, which I know he'll enjoy, and he does. I checked Instacart and our health portal recently on the iPad. I know how to access my email and BrainTalk. So, I have the most important things pretty well figured out!
Mr. Rogers
In the scene, when Fred's assistant tells the journalist that Fred loves everyone, "but he loves you more," my tears flowed. Fred embraced the disenfranchised, the victims of discrimination and injustice, the emotionally injured, anyone, who was hurting inside or out, usually both.
I have met thousands of people on my life's path, but no one compares to Fred Rogers, who had the most loving, compassionate, and honest heart.
I keep looking around. But there is no one like him now. No one to replace his beauty and humanity.
Taking Care of Ourselves
So glad that you are taking care of yourself and working from home. This is a scary time for all of us. We have to do what we have to do.
I think staying at home is an inconvenience to most people, because it limits their freedom of activities. For diversion and humor, I watch late night talk show hosts home videos on YouTube. Many entertainers are sending out videos from their homes to keep us from going bonkers. The talk show hosts joke about their kids driving them crazy, and their wives going crazy having them at home instead of working.
And that is after 2 weeks! Oh my goodness! These people are running out of ideas of things to do to entertain their kids after 2 weeks!
Jim and I have spent every day with the exception of those, when he was hospitalized (and then we were on the phone a hundred times a day), and when he went to his mum's funeral for 5 days in 1999. We've been self isolating for about 10 years.
Perhaps this is a blessing from the COVID-19 curse: families bonding, learning to love each other, use their imagination, make do with what they have. Pioneers did it. The earliest tribes did it. These are all wealthy people, of course, but they're doing their best to bring it down to our level. As I suspect most people are having the same experience of being cloistered with this families this long.
My advice to all is:
Take breaks. Separate for a little "you" time. Whatever that means: taking a shower, a walk, going to another room for a nap or to read, sitting outside on a porch or patio. Exercise any way you can.
Fill your home with music. Find humor anywhere on the internet or TV, because laughter is healing and releases stress hormones.
Be creative. Come up with a theme night for your family. Everyone dresses up like ... and you all have XYZ for dinner. Use your imagination or follow the path of many folks, who post videos of their creative ideas.
Incorporate a ritual to honor those, who are on the front lines fighting to save lives from this virus without proper equipment and protection and for the people, who are struggling with it, in ICU, needing ventilators.
In Italy, people sing from their balconies. In France, they bang pots and pans at 7 p.m. In Chicago, people sang "Livin' On a Prayer" from their windows and balconies.
We may not be that dramatic, but we can set aside a special time every day to think about and pray for these people, and everyone around the globe facing this pandemic.
We are isolated, but we are not alone. And we need to support our troops right now. Everyone from doctors, nurses, EMTs, paramedics to people who deliver our groceries and packages and keep our stores running. They are putting their lives on the line for us, and they deserve our gratitude and respect.
Oh, and now the CDC is saying that it is a good idea for all of us to wear a mask! Of course! Because we don't know if we have the virus without symptoms or someone else does. Every one of us should be wearing a mask right now!! But where are those masks for all us? Hospital and medical personnel cannot get enough masks. We can't get toilet paper, let alone masks!
It is very difficult to stay balanced and unafraid during this crisis, when there is an abundance of chaos.
That's probably contributing to the cabin fever of families worldwide. How long will it last? When can we be free again? Anxiety producing.
ANN~
Thank you for your reassurance that Kefelx might be easier for Jim to tolerate than Augmenten.
I am sure that you know, as well as many others here, that at this stage in Jim's journey, everything is precarious.
Dr. K said that palliative care/hospice might be next. Well, he's already getting that essentially from me and Nancy.
Jim refuses morphine or valium or any other drug Nancy has offered him on her last 6 visits. He still wants to schedule a "man cave" date with Nancy's husband, so they can talk about jazz, sports, movies.
Jonathan's First Angelversary is rapidly approaching now.
As hard as it is to believe, I do not have words to describe how I am feeling. But, I must repress those feelings to continue to be strong for Jim and see him through this ordeal.
There really is no other way than to live from day to day.
We thank you all for your prayers, love and support and we send this back to you ten-fold.
Be safe, well, and stay home.
We love you ~
Love & Light,
Rose
*Virtual Hugs Are Germ-Free!
Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.
Originally posted by Earth Mother 2 AngelsView Post
((((((Hugs to All)))))) ~
I was so wrapped up in the chicken saga, I missed your posts!
agate ~
Thank you for your suggestion.
COMMODE/PLUMBING
A bedside commode is not possible for Jim, as he can no longer bear weight or walk. I fear falling, and I'm not strong enough to lift or help him. He wanted to try one, but when I pointed out the dangers due to his lack of mobility, the idea was kiboshed.
The problem is that the plumbers have to access Jonathan's closet. Now that Jim is using Jon's room, that will be intrusive for Jim's intimate care needs, like changing his britches frequently after he urinates. Additionally, Jim will be exposed to whatever repairs must be made in the ceiling. I envision a lot of dust from removing and replacing the ceiling dry wall.
It's impractical in every respect, including the fact that Jim sleeps most of the day.
funnylegs4 ~
CHICKEN
Thank you for your thoughts on the digestibility of chicken. While that's likely true for folks, who regularly eat chicken, Jim hasn't had chicken or any kind of meat, fish or poultry for 24 years. He also has pre-existing digestive issues, including heartburn, indigestion, and reflux, which he gets after he eats just about anything now.
I told him this afternoon that if he has any kind of digestive problems with chicken that he will have to give it up immediately. Depending upon his level of discomfort, he'll probably agree with me. All of the meals he loves, I can't make any longer, because he can't tolerate the food. Indian, Mexican, Italian, Greek ~ he can't handle any of them.
I ordered Branston pickle and Picallily (British condiments) for his sandwiches last year. He was thrilled. Branston and cheese. Picallily and veggie ham. No more.
This morning, he ate 1 1/2 slices of honey wheat organic bread with orange marmalade. He enjoyed it, but later he had indigestion and took one Tums.
So, I'm just imagining how his body is going to react to chicken.
I brought in Orgain today, and he thanked me, but he hasn't opened it yet. I continue to encourage him that this is what he needs to fill in the nutritional gaps and help him get stronger. He agrees and asks me for a cup of tea.
The Ascites is a huge factor in how much he can manage at a time. With COVID-19, we simply cannot go to the hospital now for drainage.
I want to get him back on Lasix, but I wanted to start him on Ceftin/Keflex first today. The pharmacist today suggested that he take it with food, and I agreed. But I didn't have it yet, when he ate the toast, and he's been sleeping and wanting a BM all day and not eating.
Per his request, I microwaved a huge russet potato to slice and saute in ghee. With that he wants an egg over easy. I've been waiting since 10 a.m. to fulfill that request.
If Dr. K knew what I go through every day trying to feed Jim, he would have more appreciation for how difficult it is. Maybe then he'd stop nagging me about feeding him better and getting more nutrition in him. Unless he gets a G Tube (he won't) or has TPN (he won't), I'm doing all that can be done.
COMPUTER
Thank you for reassuring me that all will not be lost, if our computer says "Adios!" Which laptop did you purchase? So I can use an Apple laptop with my ethernet modem, and get Apple on line to help me install my back up from this computer? Really?! Oh, that's great!
The window on the left upper corner of the computer reminds me that as of today, it has been 201 days since my last back up. Hmm... I wonder what I've been doing for the last 201 days?
I've got my notes somewhere, but I can't really remember what to do now. Every day is crisis management for me, and I'm getting really old really quickly.
I am trying to use the iPad more. When Jim's awake I share YouTube videos, which I know he'll enjoy, and he does. I checked Instacart and our health portal recently on the iPad. I know how to access my email and BrainTalk. So, I have the most important things pretty well figured out!
Mr. Rogers
In the scene, when Fred's assistant tells the journalist that Fred loves everyone, "but he loves you more," my tears flowed. Fred embraced the disenfranchised, the victims of discrimination and injustice, the emotionally injured, anyone, who was hurting inside or out, usually both.
I have met thousands of people on my life's path, but no one compares to Fred Rogers, who had the most loving, compassionate, and honest heart.
I keep looking around. But there is no one like him now. No one to replace his beauty and humanity.
Taking Care of Ourselves
So glad that you are taking care of yourself and working from home. This is a scary time for all of us. We have to do what we have to do.
I think staying at home is an inconvenience to most people, because it limits their freedom of activities. For diversion and humor, I watch late night talk show hosts home videos on YouTube. Many entertainers are sending out videos from their homes to keep us from going bonkers. The talk show hosts joke about their kids driving them crazy, and their wives going crazy having them at home instead of working.
And that is after 2 weeks! Oh my goodness! These people are running out of ideas of things to do to entertain their kids after 2 weeks!
Jim and I have spent every day with the exception of those, when he was hospitalized (and then we were on the phone a hundred times a day), and when he went to his mum's funeral for 5 days in 1999. We've been self isolating for about 10 years.
Perhaps this is a blessing from the COVID-19 curse: families bonding, learning to love each other, use their imagination, make do with what they have. Pioneers did it. The earliest tribes did it. These are all wealthy people, of course, but they're doing their best to bring it down to our level. As I suspect most people are having the same experience of being cloistered with this families this long.
My advice to all is:
Take breaks. Separate for a little "you" time. Whatever that means: taking a shower, a walk, going to another room for a nap or to read, sitting outside on a porch or patio. Exercise any way you can.
Fill your home with music. Find humor anywhere on the internet or TV, because laughter is healing and releases stress hormones.
Be creative. Come up with a theme night for your family. Everyone dresses up like ... and you all have XYZ for dinner. Use your imagination or follow the path of many folks, who post videos of their creative ideas.
Incorporate a ritual to honor those, who are on the front lines fighting to save lives from this virus without proper equipment and protection and for the people, who are struggling with it, in ICU, needing ventilators.
In Italy, people sing from their balconies. In France, they bang pots and pans at 7 p.m. In Chicago, people sang "Livin' On a Prayer" from their windows and balconies.
We may not be that dramatic, but we can set aside a special time every day to think about and pray for these people, and everyone around the globe facing this pandemic.
We are isolated, but we are not alone. And we need to support our troops right now. Everyone from doctors, nurses, EMTs, paramedics to people who deliver our groceries and packages and keep our stores running. They are putting their lives on the line for us, and they deserve our gratitude and respect.
Oh, and now the CDC is saying that it is a good idea for all of us to wear a mask! Of course! Because we don't know if we have the virus without symptoms or someone else does. Every one of us should be wearing a mask right now!! But where are those masks for all us? Hospital and medical personnel cannot get enough masks. We can't get toilet paper, let alone masks!
It is very difficult to stay balanced and unafraid during this crisis, when there is an abundance of chaos.
That's probably contributing to the cabin fever of families worldwide. How long will it last? When can we be free again? Anxiety producing.
ANN~
Thank you for your reassurance that Kefelx might be easier for Jim to tolerate than Augmenten.
I am sure that you know, as well as many others here, that at this stage in Jim's journey, everything is precarious.
Dr. K said that palliative care/hospice might be next. Well, he's already getting that essentially from me and Nancy.
Jim refuses morphine or valium or any other drug Nancy has offered him on her last 6 visits. He still wants to schedule a "man cave" date with Nancy's husband, so they can talk about jazz, sports, movies.
Jonathan's First Angelversary is rapidly approaching now.
As hard as it is to believe, I do not have words to describe how I am feeling. But, I must repress those feelings to continue to be strong for Jim and see him through this ordeal.
There really is no other way than to live from day to day.
We thank you all for your prayers, love and support and we send this back to you ten-fold.
Be safe, well, and stay home.
We love you ~
Love & Light,
Rose
*Virtual Hugs Are Germ-Free!
Hi Rose,
No worries! To answer your questions, yes Apple should totally be able to help you. You may have to order a small white attachment to connect the ethernet to the laptop but it can be easily ordered. The white attachment just has a bit that goes into the ethernet cable and makes it have the same size peg that the laptop has a hole for. Had a Macbook Pro first…LOVED that because the GB storage was bigger…then switched to MacBook Air because my store ran out of the Pro model when my MacBook pro went “Adios!" after 7 years. When I got the MacBook Air I called Apple they told me what to click and tada…perfect Time Machine transfer. :)
Re: Chicken. I’m surprised John could not find organic. All my non health food stores here and when I travel have organic meat, especially chicken. I wonder if Jim’s main issues are the seasonings and the fact that he stops eating at times. Maybe his GI tract has become hypersensitive because he kinda goes without when unwell. Surprised Italian food causes a problem. Can you try pasta etc without acid based ingredients. If he’s like me, it’s the acid in lemon and tomato etc that causes problems.
Yes, Mr Rogers had the special talent of making everyone feel uniquely loved and truly wanted. He won't be forgotten.
Fist I hope and pray that everyone here is safe and healthy. Our latest numbers here in NY as of yesterday April 1 were over 83,000. I never ever dreamed it would be that high. A couple of weeks ago my daughter and i were talking and we put out the numbers we thought it would hit for it's highest. I can't believe I said 20,000, she said 60,000 I thought she was crazy ! Now here we are 4 times what I thought and still rising. We are being as careful as possible. My husband works for a branch of the nys legislature so they're still trying to wrap up the budget. He goes in a couple of days a week then comes home and strips down and washes up. My oldest daughter is living with us right now because there's just no reason to be alone. We have not seen my son and his fiancee (she works for a pharmacy) since the first week in March. Kathleen facetimed him and enjoyed that. But she misses him. I go from being calm and ok to being overwhelmed and scared. I just have to live one day at a time which I have always tried to do but sometimes it's hard not to think about how this will all play out and for how long! Just heard that they will be bringing patients from NYC up to our area hospitals! Not sure how I feel about that! I feel bad for other states getting inundated with NY'er fleeing the state.
Rose, I'm so sorry for the struggles that have been exacberated by all of this. YOu and JIm are always in my prayers. Great ideas for families and I do hope if nothing else it brings them together and helps everyone to appreciate the life and loves that we all have. I hope that we don't go back to our old self and that we learn and grow from these times. Not much has changed for us since I"ve always had to bee the "teacher" "therapist" and at times "Dr." The best advice it to relax and just do what you can. Don't stress over being and doing everything. Take the lead that your kids give and run with it. Be creative.
Praying for all at this time...
Mary Grace
Thank you for the computer information. So, I need to get MacBook Air and an ethernet adapter, then call Apple? Is that correct? That sounds too easy!
FOOD
Ascites is the biggest factor in Jim's inability to eat large amounts of food. Imagine 17 pounds of fluid, the amount drained from Jim the last time, in your belly pressing on all of your organs.
Some of his meds likely give him heartburn or indigestion. But foods trigger it too, and acidic food is particularly onerous.
Regarding organic chicken, not all stores focus on organic food as much as others. The store, where John bought the chicken, is noted for lesser quality products than the 4 stores at which I shop on Instacart (and before, when I was physically shopping). It's also cheaper than other stores, which have better quality products. You get what you pay for. Beyond that, it's the pandemic, so shelves are bare. And organic stuff may go first and be replaced last, so the store can sell off what they have in stock.
The whole chicken John purchased was $7.99, and just over a pound. The half organic chicken, which I've ordered from our favorite healthy foods store, is nearly 2 pounds at $8.99. And we are assured that the chicken was humanely raised and fed. No antibiotics. No GMO. It's plastered all over the bag, in which it's delivered, unlike the chicken John purchased.
If Jim is going to take this leap into eating chicken, we have to feel that the chicken is safe for him to eat. Then, we will pray that his digestive system doesn't rebel after 24 years without an animal inside of it.
It's incredible to even have chicken in our kitchen after all of this time. Jim was a hard and fast vegetarian, and happy with our meals, until recently, as he looks in the past and remembers the food he ate when he was young and healthy. The chicken is actually a nostalgia thing for Jim more than it is for nutrition. He feels deprived of the things he most wants, because of all of his health issues. He just wants what used to be for him now.
While I do understand his point of view naturally, I also worry about the practical application of meeting his desires and wants now. I don't want him to suffer severe digestive problems, because he needed to remember eating chicken.
ALTERNATING MATTRESS PUMP
The mattress pump has been iffy for a few days. The mattress is definitely out of alignment, but unless Jim can get out of the bed and allow me to try to pull it over, I can't do anything about it. Jim is experiencing pain and skin breakdown, so this is very important.
Jim decided that the pump was on the fritz. So, yesterday, I contacted via phone the wonderful company, who rescued us with a new mattress and pump in November 2018, for Jonathan. I received the same caring, excellent service, and a new pump will arrive tomorrow or Friday. It's in a warehouse in California.
The day, when we changed over Jonathan's mattress, right before Thanksgiving, 2018, is the day John captured the beautiful photos of our precious boy.
Once I had ordered the pump, I returned to Jim to see how the current pump was working. Fine. Just fine. It still is working. The new pump arrived today. Thankfully. But now we'll have a back up pump, should this one need replacing.
CEFTIN/KEFLEX SIDE EFFECTS
As with Augmenten, after 3 doses of Ceftin, Jim became quite ill this morning. He began coughing, having reflux, and then vomited. I don’t know what we’re going to do now. We’re stopping the Ceftin. I doubt that Jim can tolerate any of the antibiotics for this UTI.
He ate well yesterday, after enjoying an egg salad and sauteed potatoes, his Orgain shake, one of Nancy’s tarts (she dropped some off on our doorstep, bless her), applesauce and a cookie.
He gets relentless hiccups, when these episodes happen. I stopped them today by feeding him applesauce.
We can’t make any progress with his nutrition, if he’s going to continue having these vomiting episodes.
He is skin and bones with a giant tummy. He really wants to eat, and he enjoys eating. This is breaking my heart.
After vomiting, Jim was too weak to pull himself up in the bed. So, I pulled the bed out from the wall and pulled him up with the bottom sheet. He was able to assist a little, which really helped me. The problem is that once we get him set up, he slides down, because the mattress cover is slippery. Same thing with Jonathan. It’s the nature of this kind of mattress.
John texted today to remind us that he’s available to get us anything we need (if he can find it). I texted back, “If you can find any young, healthy bodies, we’ll take one each. Thank you.”
MY WALKS & COVID-19
When I encounter my friendly neighbors on my walk, we take turns stepping aside to allow the other to pass. Yesterday, a neighbor with a lovely dog, who loves to let me pet her, approached. I smiled at her “dad,” and said, “Oh we have to socially distance, and I can’t pet her! I wish I could!”
He walked past me and turned around, so we were 6 ft apart. He said, “I know, and I’m sorry. She loves you. Look at her tail!”
Wagging away, her head tilted as she stared at me, as if she was wondering, “What? Don’t you like me anymore?”
Aww…
All of our common areas and amenities have been cordoned off with Caution tape.
The golf course is empty. The ducks and geese have left.
The amount of air traffic over us has been reduced significantly, which is the only good thing I can think of right now about this horrid virus.
Thankfully, we have a very popular and efficient Governor, who has been on top of the situation well before our federal government began responding. Gov. Newsom (former Lt. Gov.) knows about preparedness for wildfires, earthquakes, floods, mudslides.
I have faith that the Governor and our state legislators are doing all that they can to mitigate the impact of COVID-19 in California. Other states should be following our example.
From various modeling scenarios, it appears that the virus is congregating on the East Coast and spreading to the West Coast. By getting ahead of the virus, California may be spared the onslaught of cases experienced in other states.
I am old enough to have lived through some terrifying times in our world and our country. COVID-19 is the most terrifying among all of them.
As I endeavor to cope with Jonathan’s upcoming First Angelversary on Easter, grieving for him and for Michael, and facing the loss of my beloved husband, I just have to ask God, “Why now?”
I say that quite often it seems. “Why do we have mold now? Why is the toilet leaking now? Why this why that why why why?”
So many of our dear friends are battling serious health issues; many are Seniors. The stress of COVID-19 is exacerbating their conditions, and no one wants to get near a hospital now, even if they really need to be there for a non-virus issue.
For them, I also ask, “Why now?”
Everybody’s plate is full to overflowing with problems. Now, we fear the deathly infliction of a virus from bats.
We can’t physically touch each other with a hand on the shoulder or a hug for support and comfort. During all of the tragedies in my lifetime, both personal and global, this has never been the case. Never.
We need each other so much now, but we have to be content with external support and comfort. The physical touch means so very much in care giving. People are dying alone from this virus, because their family and loved ones aren’t allowed near them in ICU.
WE’RE ALL HERE TOGETHER NOW
I’ll leave you with this, and I apologize for the length, but it comprises 2 days of composing.
When I mentioned to Jim that I needed to take out the trash bins for tomorrow’s pick up, he moaned, “You have to do that every week. You have to do everything. I wish that I could help you. And then you have to do everything for me. I’m so sorry.”
Holding back tears, I replied, “You’re here. I’m not alone. Before you arrived in our lives, I did all of these things on my own as well as taking care of Jonathan and Michael. Then, you were here, and you did these and many more things. You were everything to our boys and to me, and nothing stopped you from working for our benefit. You’re here. I’m not alone.”
“I don’t want you to be alone,” Jim whispered.
“I know, but I’m preparing for it, and I’ll be fine. It will be painful. But I know what I have to do, and it will be done. But I will be alone, without you, without our boys. So, as long as you are still here with me, I am not alone. We still have so much between us. So much to talk about. Whenever you are ready, I’ll be ready.”
Then he shared again with me how much he feels Jonathan’s presence, which of course makes tremendous sense, since Jim is sleeping on the bed, where Jonathan passed, and Jim performed CPR on Jonathan. The other night, Jim woke up and asked me, “Is he still over there?” pointing to the window. “Who?” I asked. Jim replied, “Never mind, I’m just waking up.”
Of course, he was seeing Jonathan.
I told Jim that I am so disappointed that Jonathan doesn’t visit me in my dreams. I feel him all around me, but I just want to hold him in my dreams. Michael has been appearing periodically in my dreams. But not in Jim’s dreams.
So, I surmise that Michael is watching over me, and Jonathan is watching over Jim. Michael and I have nearly 17 years of connecting spiritually. After Michael passed, Jim focused on Jonathan, so it’s natural that they would reach out to us this way.
It isn’t that we don’t both feel their presence all of the time, of course. But we seem to have selective dreams and dream-like contact with our boys.
There must be a reason for that.
OUR LOVE AND PRAYERS TO ALL!
Be safe. Be well. Be good to yourself. Send prayers around the World.
Love & Light,
Rose
*Virtual Hugs Are Germ-Free!
Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.
NY’s number of COVID-19 cases is astounding and frightening. I know you must feel overwhelmed frequently, as I do. I’m just praying that California is ahead of the curve, as we started lock down about 3 weeks ago. For the most part, I see people adhering to the stay at home guidelines. When I drive to pick up Jim’s meds, the absence of traffic is noticeable.
I wish your husband could telecommute. Apparently, the new thing is Zoom on the internet, which allows people to connect with multiple people at one time. Is your husband wearing a mask at work? I highly recommend it, as does the CDC now.
Like you, I have anxiety about how long the pandemic will last. California’s schools are closed, at least until September, and students are being taught on line by their teachers.
I was watching the local news today, and the bottom chryon was running a list of all of the places throughout Southern California, which are “closed until further notice.” I’m thinking of all of those people, who work at these places, like museums, art galleries, amusement parks, beaches, restaurants, hotels, who are out of work now. Also, no tourist dollars coming in.
This is the worst crisis most of us living on the planet have ever experienced. My 97 year old friend says that this is worse than WWII.
No wonder everyone is on edge, afraid, fearful, and feeling cooped up in their homes. As you said, we just have to take each day as it comes. I start my bedtime prayers with: “Thank you for today, yesterday, and tomorrow.”
We send you and your family our love and virtual hugs to remain strong for the duration. Just keep loving each other through it.
JIM’S UPDATE
Nancy came today to recertify Jim for her services, which was handy for many reasons.
When I opened the front door, she was wearing a mask and bright green goggles! We laughed. She said the agency procured these for their nurses and aides. At long last! Nothing like closing the barn door after the horses have left.
She looked at Jim’s vitals, which I always take prior to her visits and jot on notepaper for her to input into the computer later. SATS: 93 HR: 89 Temp: 98.2 BP: 81/60 Yep. She asked me what was going on, and I filled her in.
When she walked in, Jim laughed at her gear. Nancy had her arms out, walking toward him like a monster. It’s Halloween in April.
First, she assessed him, and she commented that he looks better than he did the last time. His color is good.
She surmised that he could have low sodium levels and recommended that Jim drink BodyArmor. That brought a smile to his face. He loves that sugary stuff. Add salt to his food, which I did today. Tea is good too.
Coccyx Wound
Jim has been complaining of pain on his coccyx, where we’ve been treating a wound for years. It’s difficult for Jim to turn over fully, so that I can clean it and change the dressing. And the wound is supposed to stay covered for as long as possible, because changing it too often disturbs the cell regeneration.
Nancy helped me so much moving Jim in bed, so that he could lie on his side and give us full access. The wound is Stage 2. She brought in a powder for the center, then applied Calmoseptine in a circle around it. We placed a 6 x 6 Optifoam pad on it. I will check it on Monday or Tuesday for a dressing change.
She helped me put a clean pad under Jim, which we used to lift him up in bed. She is amazingly strong! Jim helped too by lifting his rear.
We applied Aspercreme to his lower back and under his right knee.
BP Recheck
After tossing him about, Nancy took his BP the old fashioned way, not on our machine. She got 91/61. She tried on the machine, and it was a bit lower. I asked her to use her number, or Dr. K might freak and want Jim to go to the hospital.
After having some BodyArmor, an egg and fried potatoes, as well as a yogurt this morning, Jim is feeling pretty good.
I will recheck his BP a few times this evening.
Ceftin/Keflex
Nancy thought we should try it again, with Jim eating every time he takes it. She said, “Start off with just one a day, and see how that goes.”
She agreed with me/us that Jim should be getting 3 breathing treatments a day, even if he doesn’t think he needs one. She suggested that both the Augmenten and the Ceftin treat respiratory illnesses too, so that may be why he spews up more mucous when taking them.
We have to keep him as upright as possible in the bed, which is no easy task for him or me. Jon stayed up in the bed better than Jim does, because Jim moves around in bed. Jon didn’t.
So, we’ll give Ceftin another try, as she suggested.
The problem occurs when any progress we make with his nutrition is obliterated by vomiting and loss of appetite. He can’t afford to lose any more weight.
TEARS
Jim found a tribute to Garth Brooks for the Gershwin Award on TV. In between taking care of Jim and preparing for Nancy’s visit, I watched some of it with Jim.
Jim walked down the aisle to “If Tomorrow Never Comes.”
The music accompanying the slide show of Michael at his celebration was “The River.”
When I reminded Nancy that Jon’s first Angelversary is on Easter, I began to cry. She was washing her hands wearing her “monster suit.”
“You’ve got too much, Rose,” she said tearing up too. “I don’t know how you do it, but I’m here to help you.”
Meanwhile, she and her husband are distancing from their two daughters and missing their baby granddaughter. They all live close by, but they can’t interact. "At least we can FaceTime,” she sighed.
Then, she told me about her daughter, who ran out of toilet paper, came to the end of her driveway to ask her for some, and she threw 3 rolls at her daughter.
We countered the tears with a good laugh.
I shall leave you all with this incredible song by the brilliant Jackson Browne. So relevant to today. “A Little Soon To Say.”
We love you all and pray for you and your loved ones. We thank you for your prayers, love and support of us. We’re not alone. You’re not alone.
Be Safe. Be Well.
God Bless You. God Bless Us All.
Send Prayers Around the World!
Love & Light,
Rose
*Virtual Hugs Are Germ-Free!
Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.
My dear Rose,
Thank you so much for the updates! I have been reading but a little bit out of my mind lately so have been unable to respond in my usual way. My brother in law finally (yesterday) heard from the surgeon and we have a plan. The hospital will reopen after a 2 week covid cleanse and the brain surgery will take place the week after next. The surgeon said they can get the tumor via the nasal cavity rather than a craniotomy which came as a great relief. They won't be able to get all of it but whatever they leave is not malignant and slow growing. Neighbours are stepping up to help my sister and we all feel very relieved that we have a plan that does not involve dying at home, abandoned by the health care system which is frankly what we were all feeling. Covid is playing total havoc with our normally very good health care system. Anyway, I am so so glad that you have your dear Nancy to help you (I wish I could be Nancy for my sister!!!). For Nancy, for you and all the other helpers, I posted this today on my blog. Only registered and activated users can see links., Click Here To Register.... Love and prayers always, Donna xo
Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
Check out my blog: http://www.donnathomson.com
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