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Thread: Jim Has A Fever. ER Bound

  1. #151
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    Rose, No, I have never had purpura, but plenty of my patients, and Mom did. Treatment involves solving the reason it occurred in the first place. In Jim's case it will be difficult as the steroids have thinned the skin and weakened his capillaries, as you have noticed. Just be careful to avoid cuts and bumps.

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  3. #152
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Donna)))))) ~

    The basement looks wonderful! A victrola? How cool! Do you ever use it? What a very special place your cottage is, with all of its incredible history and memories. Iím so glad you were all able to spend some time there getting it in shape for the summer. Now, to make more fantastic memories!

    THE SHOWER

    Jimís SATS are very good, and he doesnít need O2. In fact, too much O2 can cause respiratory problems. Any kind of exertion causes Jim to lose his breath, sometimes even straightening and pulling himself up in bed. This is particularly true, if heís due for a breathing treatment. So, stairs are out of the question.

    He finally decided that he was ready to take a shower yesterday afternoon, when he was overdue for a breathing treatment. I tried to encourage him to have the treatment first, but he insisted he wanted a shower, or heíd lose his desire to do it.

    When he stepped out of the shower, he was huffing and puffing. I told him to sit on the toilet, while I fetched his inhaler for quick relief. Drying off is also a challenge for Jim, so I did that, while he rested.

    He shaved, but he canít see into the little mirror we have propped up behind the sink faucet. He sits down in a chair in front of the sink. He missed quite a bit. I tried to clean up the rest, but he gets fussy with me when I shave him. Itís not like I donít have experience ~ I shaved Michael and Jon for all of their adult lives.

    He felt good after his shower and shave. I reminded him that he always does feel better. I told him that he needs to do this every couple of days, then it will become less of a chore.

    While Jim shaved, I pulled up his bottom sheet and repositioned his alternating pressure mattress, which is doing a great job, and the pump is so quiet. He had a freshly made bed, after his shower. That feels good too.

    If he would just get out of bed long enough every day, I would do this every day!

    COOKING

    Referring to me as a ďchefĒ is such a lovely, but undeserved, compliment. I am a cook. Thatís it. Nothing complicated or exotic. In our younger years, I tried to learn to cook Indian food, as this is Jimís favorite. It looks so easy on TV cooking shows. UmÖnot so easy for me.

    SLEEP

    I will update about my sleep and recent dreams in Jonathanís thread. But to answer your question, Iím probably sleeping more now than I have in 50 years.

    Yes, Iím exhausted in every possible way to apply that term. Thankfully, Iím being allowed to sleep, because I truly need it to keep functioning. Iím gathering all of it that I can, while Jim is feeling better, because a time may come, when he isnít.

    You are so very dear to me too, Donna, and I thank you so much for everything.

    Our love and prayers to you, Jim, Nick, Natalie, and your family.

    Love & Light,



    Rose
    Hi Rose,

    Iím glad Jim finally showered and is still off of O2. As for Indian food, I donít know how to cook Indian food for the life of me but I adore Indian food myself. I have seen ďAmyísĒ brand sells Indian food meals that you could probably order and if that doesnít work I do have my friend(from India) coming back in the Fall and I could ask him for tips as his family owns an Indian restaurant. Prayers to you always!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  5. #153
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    ((((((Hugs To All)))))) ~

    callyflower ~

    Thank you for your reply. I guess there could be a variety of reasons why Jim has purpura, such as steroids, low platelets, low WBC.

    Jim tries to be careful, but it's so easy to bump into things, when the living room is cluttered as it is. I did advise Jim to change his route to the bathroom to avoid banging into the edge of the chair arm. I noticed he had a bruise on his thigh at just that height, and he remembered banging into it. If he just lightly grazes something, he has a mark, or the skin tears, and he bleeds.

    It's probably pretty common among elderly cancer patients, particularly those in Jim's situation.

    Question for you: Are peeled cucumbers safe for Jim to eat with his low WBC? He loves and misses English cucumbers.

    Hope all is well with you and your family ~ always in my prayers ~

    funnylegs4 ~

    We do occasionally eat Amy's frozen Indian meals, and Sukhi's samosas, but they are all loaded with sodium, which we both need to watch. There are also many kinds of Indian sauces, but again, sodium is a consideration.

    I have at least 6 Indian cookbooks. I've watched numerous Indian cooking shows. Years ago, an Indian neighbor offered to teach me how to prepare her favorite dishes.

    The problem is that these dishes take time to prepare, and while I have more time now that Jim has improved, I still cannot manage being on my feet for a long time in the kitchen (or anywhere, actually).

    Even if our favorite Indian restaurant hadn't burned down a few years ago, we still couldn't order from it, because of Jim's low WBC. We also don't know how much sodium is in restaurant food.

    Thank you for your prayers, and know that you are always in our prayers too.

    Nancy cancelled her visit for Jim's port draw today. She has some kind of "cough or cold" for which she is taking antibiotics. She offered to come tomorrow, but I asked her to wait until Friday. I think I'll change that too, and we can wait until next Tuesday for Jim's blood draw. We can't afford for Jim to pick up any kind of bug, and if he caught a respiratory bug, I think that would be the end for him.

    After a coughing spell this morning, Jim's SATS were 92, but his heart rate accelerated to 100. It did come down to 82, once he settled, but his normal heart rate is 65-72.

    He isn't sleeping well at night, so he's napping in the mornings and afternoons. He just slept through the gardeners. I don't know how. His daytime snoozing is encroaching on my housekeeping and laundry. I have to start early, take a break while he sleeps, and finish late in the evening.

    We just take each hour of every day as it comes. We're still here and functioning. That, on its own, is an accomplishment.

    Thank you all so much for your continuing love, prayers, supports and friendship. You are a blessing in our lives, and we pray for all of you and your loved ones.

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  7. #154
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    Rose, I think you should contact Dr K and ask him what, if any, precautions you need to be taking. Of course any peeled fruit or veg is safe. Cooked restaurant food would be fine as well. I ate cooked food from restaurants with a 0 WBC. My WBC hovered around 2 for almost 2 years as well, and I had long since abandoned precautions. I know Jim is more frail than I was at 48, and that is why I think asking the doc himself would be good practice.

    I would encourage you to get someone to do that blood draw ASAP. Jim really needs close monitoring right now, especially with the purpura making its appearance.

    Yes, bumps and scrapes happen. I bruised horribly while on almost 20 years of prednisone. My mom was always a mess because of Coumadin. Oh, the bad old days! All we can do is try our best.

    Take care!

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  9. #155
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    ((((((callyflower)))))) ~

    Thank you for sharing your experiences with us. We truly appreciate your insight.

    My Instacart order today included an English cucumber, and Jim was over the moon about it. I'm sorry that I've deprived him so long, as he loves cucumber sandwiches. I have just been avoiding all fresh fruits and veggies, unless I'm cooking them. Jim has been craving fresh tomatoes. Are they safe? If I peel them?

    For many years, we have avoided restaurant food during flu season, which gets longer every year. Now, with Jim's low WBC, I worry even more. Our nurse having a cold in June, and she is never sick in all of the years we've known her, is concerning.

    But, Jim eats hospital food, and so did I, when I was there with our boys. I also went to the cafeteria and brought up food to eat lunch with Jim when he was in the Cancer Unit in April.

    I've been protecting my sons and Jim for so long now that I am a complete germaphobe. That's why I also don't want to ever get in a taxi, Uber, bus, train, or plane again. Studies on these forms of transportation reveal a truckload of germs. I'm not keen on ambulances, either, but at least I know that the EMTs scrub them down after each patient. Or they should. I inspect them closely, when I'm in one, you can bet on that!

    Regarding the purpura ~

    I'm noticing every day that it is fading. He had a long spot on his arm and on his shin, which are gone. Some of the spots are residuals from his April hospitalization, and the IV placing in the dreadful sub acute care home. The spot on his neck came and went in two days, never reaching full redness.

    The gash on his arm during the shower is healing well. I cleaned it with Skintegrity, put a dab of Neosporin on it, covered it with Optifoam, and it's fine.

    Clinically, Jim is doing very well. He stood in the kitchen with me this afternoon, as we watched the rufus sparrow dad teach his offspring to fly from the roof of Jim's workshop to our neighbor's tree. Now that the waterfall is flowing, birds are flocking for baths.

    His vitals are all very good. His urine and bowel output is outstanding. His appetite is excellent. His color is good, no jaundice or paleness or gauntness. He's doing fine off of O2.

    Finding another qualified port nurse on our team might be a bit of a problem. Nurses are quitting on a regular these days, after new management took over. They are working their nurses into the ground, with absurd requirements and demands. Patients aren't receiving their supplies. It's a mess.

    With Jim's delicate skin, we can't risk a peripheral draw, unless Nancy performed it, because she's extremely skilled. Even then, I know Jim would bruise in a big way. It's happened many times before over the last 6 months.

    But realizing that the 4th is approaching next week, Jim and I want his draw done Friday. Jim and I will also don masks, and we'll try to make her visit as brief as possible.

    Unless Jim's platelets drop below 15, he will likely not receive a platelets transfusion. I don't know what Dr. K's plan would be if Jim's WBC dropped below 1.0. I just remember him telling us that Neupogen is an expensive drug.

    Really? Then why were all of the Cancer Unit physicians urging Jim to take it? At that time, Jim believed Dr. K, who had told Jim that it was a mistake to give him Neupogen. Jim's health deteriorated rapidly after that first dose. However, on one-third of the dose, he did well, and his WBC increased to 4. It didn't last.

    My guess is that if I ask Dr. K what foods are safe for Jim to eat with a low WBC, he will tell me to consult a nutritionist or the Nurse Navigator. Dr. K basically stays in "his" lane.

    Parameters surround everything, and nothing is easy to accomplish in a maze of specialists, who want to SEE YOU, regardless of how difficult that is for you.

    We all know how that is, the never-ending doctor's visits, in a search for answers and help. Jim isn't up to that any longer.

    Jim is content to watch the birds in Michael's pond, with his arm around me, as I peel potatoes at the sink. He's happy to watch old movies on TMC and the Dodgers' games, while we eat our meals or have snacks. We actually laughed to the point of tears during today's Dodger game. I don't remember now what caused the laughter, but we really needed it.

    So, we'll see what the Friday blood draw reveals, and we'll go from there. If Jim's purpura worsens, I will contact Dr. K and Nancy.

    You are so right that all we can do is to try our best. For Jim, that means making life as stress-free as possible.

    Thank you again for your encouragement and caring. We'd love to know how you are, and we send your our healing prayers for you and your family.

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  11. #156
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    Rose, Yes, go for the veggies and fruit. I would think ANYTHING would be OK if soaked in either a vinegar solution or a veggie wash solution and then rinsed well. I do my strawberries in a bowl of water with a splash of vinegar and it keeps them from getting mushy for a long time, as any surface fungus is destroyed.

    Cucumbers are so yummy. One of my husband's patients has been sending him home with a bag of garden fresh cukes every visit. So good, especially with a homemade yogurt dip.

    Maybe you can consider doing some restaurant deliveries from some well-rated restaurants near you. Not eating meat goes a long way toward not getting a food-borne illness. Choosing a place that makes each dish to order would provide extra safety.

    We are doing well. I have been gardening, walking, and biking a lot this summer with my neighbor and my daughter. I am attempting to grow succulents, which thrive where you are, but are not doing so well here because this year it just won't stop raining. I regret investing the time and money into this project, but it seems every once in a while I have to try something completely out of the box. Now I get to watch the succulents rot away, despite my very best efforts. Ugh!

    I hope the blood draw nets good results!

    C

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  13. #157
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    ((((((callyflower)))))) ~

    I'm so happy that you are getting so much excellent exercise!

    My gardening days are long gone, but it's a great feeling to work the soil and watch the fruit of your labor blossom. But, I'm sorry that your succulents aren't thriving. Succulents are very popular in our neighborhood. People have ripped out their side yards just to plant them and cacti. And they are all producing gorgeous blooms!

    If you have a covered porch or patio, perhaps you could put your succulents in pots and stash them there until the rain stops. It would be a shame to lose them all.

    What kind of vinegar do you use to wash your strawberries? Does it also work for blueberries? Jim so misses his fresh fruit on his cereal, although he's become accustomed to organic diced pears and peaches in their juice over the last few months.

    Garden fresh cukes! Wonderful! I used to make a yummy tzatziki dip with grated cucumber, garlic, dill, parsley, and a spot of oil in yogurt. We had to nix yogurt, when we realized it was congesting Jim's sinuses.

    For the past 2 days, Jim's lunch has been a cuke and boiled egg sandwich on Dave's Killer organic white bread.

    There is only one restaurant left in town, from which we would consider ordering, and they aren't on any delivery services. I'm not worried about food-borne illness as much as I am people, who don't wash their hands after handling money, touching our take away boxes. I'm concerned about wait people and chefs, who might not be well and are breathing on the food. Not every food handler wears gloves, although they should. And a mask!

    I know. I am an over the top germaphobe. I confess. But I became this way for very justifiable reasons. We can do without restaurant food. We have for many years.

    Every meal I serve to Jim, including his morning cereal, he tells me, "It's lovely." He volunteers that praise, or he says it, if I ask him how his meal tastes. Sometimes, he pauses between bites to say, "This is delicious!"

    It's all very basic, and I use a jarred organic spaghetti sauce and Simply Organic simmer mixes for Mexican dishes. But all of our produce is organic, and the majority of our food is organic. I think it's the flavor of our vegetables, which influences the taste of our meals the most.

    TODAY'S ADVENTURE

    With Nancy visiting, Jim was motivated to shower and shave this morning. He had difficulty getting our faulty shower head and faucet to work. After he tried to fix it a few times, I asked him to let me try. I punched down the faucet stopper and pulled it up. The shower head came on full power, the best it has been in years.

    When Jim asked me how I did it, I grinned, "Magic?"

    The same way that "I" got Michael's waterfall running again. I'm not in charge of these things. They are just happening.

    Jim needed a shower, and we didn't have time to call a plumber. It just had to work. Jim said that it's the best shower he's had since his last one upstairs. I winked, "Stick with me; I've got you covered."

    While Jim shaved, I readjusted his mattress overlay and remade his bed. New pillow cases and under pad. I numbed his port at 11, then took my shower, while he napped.

    Nancy put her mask on at the door, and she was expedient in wanting to spend less than her usual time with us. All of the port draw supplies were on the dining room table, so she could select what she needed. While she gathered them, I took Jim's vitals. Temp 98.6 SATS 93 HR 74. We didn't get to BP, but I'm sure it was his usual stellar better than recommended normal.

    Purpura

    I reminded Nancy of the spots Jim has had on her previous visits, which I suspected is purpura (thanks to you, callyflower). She agreed. She said, "Doctors usually aren't concerned about it, because there's nothing to do for it really. If it's from steroids or chemo or all of those things, it's inevitable. The skin is thin, so he gets tears, which you treated. It got better."

    I mentioned low platelets, and she nodded again. But unless he gets below 15, no transfusion will be considered.

    She looked at the remaining spots on Jim's arms, and some of them are scars from his April hospitalization and assorted sticks, eg, IV placement in ER and at the sub acute facility, he had. She said that it's a good sign that these spots are dissipating.

    Lab Draw

    Not long after she left to take Jim's blood to the hospital lab, so that we can see results on the health portal, she returned. She was concerned that she didn't draw enough blood. She offered to go through his port again or take it peripherally with a "baby needle." Jim chose the needle, and his veins are so throbbingly available. It was a breeze, and she made sure to keep pressure on it for awhile to reduce bruising.

    I masked her, but she didn't put on a gown, and she did wear gloves, of course. She was in and out.

    As she apologized, she said she didn't want the lab to refuse the samples, and for Jim to have to go through it all over again, and wait until next week.

    I asked her how many port and infusion nurses are on our team, in addition to her. She named one nurse. Our county is HUGE! It's like when Jonathan needed a WOCN, we only had one to serve the entire county in our agency.

    I will add here that the WOCN, who did visit Jonathan, was the nurse, who cared for Jonathan's 5" tunnel wound for a year about 10 years ago. He and Jonathan were buds, both loved Springsteen and sports. It wasn't too long after his visit that Jonathan passed. I'm so grateful that Jonathan had a chance to say goodbye to his dear friend, although I didn't realize that at the time.

    The last visit from the Toenail Team resulted in the complete removal of the toenail, which had been a problem for over 6 years. It was a successful, albeit long process, so that Jon could avoid a hospital and surgery. He loved all of the ladies of the Toenail Team through the years. And they love him.

    And, it's Friday again. I woke up at 4:30 a.m., as I do every Friday now. I heard Jim start a breathing treatment, but I didn't get up. It was time for a treatment, and he knows what to do now. When it finished, I got up to check on him, and he was asleep.

    Until 7 a.m., I laid awake in bed with a million thoughts and images running through my head.

    And then, the day began.

    Thank you, callyflower, and all of our dear friends here, for your love, prayers, support, advice, guidance, encouragement, and friendship. We pray for you and your loved ones and are sending you all healing energy.

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  15. #158
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    Rose,

    Just use white vinegar for soaking berries. 1 tablespoon or so per quart of water. Let them soak about 5-10 minutes and then drain and let them dry. This works for any berry.

    I have been actively working to keep the succulents going. I've replanted them in some amended "gritty soil" and we've been moving the planter (a 22 inch bowl) under the porch and back out again. Early on, though, they got too wet and then it was cloudy and humid for a couple of weeks and I lost one and others aren't looking happy. It's drying now, so hopefully they will perk up again.

    I grow veggies with no difficulty at all. Tomatoes, squash, green beans, black-eyed peas and peppers, along with several types of herbs. My garden is just 12' x 6", but produces a lot.

    Hope the labs come back looking good.

    CIMG_20190611_1316254.jpg
    Last edited by callyflower; 06-28-2019 at 05:47 PM.

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  17. #159
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    My dear Rose,
    I am sorry that I've been remiss lately at keeping my letter writing! I have been reading your messages though and I'm very happy to hear that Jim is doing so well. All because of your care, of course. I'm really relieved that the shower works on the main floor! What a difference to health and wellbeing a good shower makes. And it's too taxing for Jim to climb the stairs. You are magical wonderwoman for fixing the showerhead! I know you will let us know what the blood draw shows - you and Jim and those results are in my prayers.

    We are all doing fine. I have been working very hard lately on promoting my new book - writing to journal editors, newspapers, radio stations, friends, family LOL anyone who might help with promotion. Zachary and I are excited to have a conversation about the ideas and more than anything, we want to be helpful. Yesterday Jim and I went into town to buy a new car - we got a Subaru outback. It's a great car for Canadian winters - 4 wheel drive for the icy hills, heated steering wheel (yay!) and heated seats (yay again!). I think we are too old for this car, though. It is all computerized. You click the car open as normal with the fob but then you just push a button to turn on the engine, can you believe it? And the radio and lots of other things are voice controlled but I get nervous and the computer says, "I didn't get that". It's just crazy. I can imagine you and me sitting in the front seats laughing our heads off at this Jetsons car!

    Nick is doing super well these days. He has been so interested in eating since his gall bladder surgery (makes us wonder how long that was brewing). Yesterday he went to the grocery and bought haddock and caesar salad - can this my kid who only likes junk food??? We talked about maybe making something like a tuna melt out of the fish - he didn't want it plain. He liked that idea. I was proud of him for choosing to experiment with healthy food a bit!

    Anyway, I'll sign off because we have a tornado warning right now and so far it's just raining hard, but we have the bath tub filled just in case we lose power (that means our well stops working - country living!).

    Lots of love and continued prayers for Jim's steady improvement and some rest for you, xoxo Donna
    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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  19. #160
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    Seems like I have been MIA for a very long time. Life is just getting away from me. Spent a week in South Carolina to watch my only granddaughter (Tyler's sister) graduate from High School. She has grown up way to fast. Got home only to have Tyler suddenly get very ill with sepsis from prostatitis, which just makes the seizures and autonomic dysreflexia flare. Spent three days in the hospital and will spend a month giving him Cipro daily and closely watching his vitals. He is in a lot of daily pain and that is wearing on all of us. I do read all of the posts and try to keep up with the BrainTalk family, but haven't posted. Please know that I keep you and Jim in my daily prayers. I think about you guys all the time. I'm glad Jim is holding stable and that you are able to get some much needed rest. I know you are holding yourself together one day at a time and I am always amazed at your resilience. You have been, and will always be, an inspiration to me.
    grandmother of Tyler (24): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

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