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Thread: Jim Has A Fever. ER Bound

  1. #91
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    Thumbs up Improvements

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

    Today, I scheduled an appointment for Jim with Dr. K on 5/31 at noon. If he needs ambulance transportation, Dr. K's nurse said that would be fine.

    I asked about his blood work results. WBC: 2.0 (almost the same as last week) Platelets: 33 (up from 23) Dr. K had no instructions for Jim, so his blood work is stable. I asked about his sodium level, as that is a concern with Ascites. His level is 139, and the range is 135-146. So, it's fine. This makes me wonder whether Ascites is not the correct diagnosis. Ascites is Nancy's speculation on his condition.

    Today, on room air, Jim's SATS were 90 for several minutes, and his heart rate was 65. Very good. So, I knocked his O2 down from 3 liters to 2 liters, and his SATS are 94. This is progress, and I'm hopeful we can keep weaning.

    He has gone 6 hours without needing a breathing treatment, so that's also a good sign.

    I changed the dressing on his wound, and the site looks unchanged. The overlay mattress is doing its job, and I'm so grateful.

    Last night, Jim slept through dinner, so this evening, I will make "Bubble and Squeak," which is British for sauteing leftover veggies (I use ghee). This is usually a breakfast meal, so Jim will have a fluffy mushroom omelet, and a helping of Amy's vegetarian baked beans.

    I baked Simple Mills chocolate chip cookies today, which is one of our favorites. For a snack, I brought us each a cookie, after which Jim said, "You know the thing about these cookies? You need to have two of them to really appreciate them." Although, we aren't gluten-free folks, we love all of Simple Mills products, because the almond flour is good nutrition. Almonds are supposed to be healthy for the heart.

    Once again today, Jim was compelled to tell me, "If it weren't for you, I wouldn't be here now. You are taking such good care of me, and I know it's wearing you out. I'm so sorry. I just want you to know that I'm so thankful for you. I'm trying to do more for myself now, so I can take some of the load off of you. We'll get there, honey."

    One thing is certain, we won't stop trying.

    As always, we thank you so much for your love, prayers, and continuing support. We love you and pray for 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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  3. #92
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    Oh Rose. I am so glad to read this today. A bit of hope. A bit of stability and good test results. I am in Milwaukee with Jim visiting Natalie and today we went to UW Madison where Natalie will begin her PhD in September. Nat presented a panel on the history of disability design last night at the Milwaukee Art Museum. You would have absolutely loved it. I am so relieved that Jim feels a little better, you are both eating and that your wonderful care is the reason for all of this. 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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  5. #93
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    So happy to read that Jim is holding his own. That’s good news. Hoping you can get some much needed rest. Continuing to pray for both of you. Sweet dreams Rose.
    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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    I pray that there continues to be good news. It was good to see even a little positive steps in the right direction. Positive thoughts and many prayers always headed your way.
    Mary Grace

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    ((((((HUgs to All)))))) ~

    Thank you Donna, Tamie, and Mary Grace for your positive energy and prayers and for continuing to lift us up.

    In the past few days, Jim has been taking off his O2 cannula, walking to the bathroom on his own, taking care of business, and walking back to his bed. He tells me "Going to the bathroom," and I stop whatever I'm doing and go to him. But he's usually finished by then, and on his way back to bed.

    He's using the bedside urinal I ordered for him to reduce the number of brief changes needed.

    Jim slept well last night, only waking up once to cough, and then going right back to sleep.

    Today, I decided that we need to weigh him every day, and I need to measure his gut with a tape. We should have been keeping track of this all along, but other things seemed to take precedence. I can just look at him and see that there hasn't been much change, but we should be charting this too.

    Yesterday, I made a huge batch of spaghetti sauce, so I didn't have to cook today. Instead, I cleaned.

    A little here, a little there. It's all I can do. At least, it's something.

    We love you and thank you all for your steadfast friendship, prayers, and love. We pray for you and your loved ones and give thanks for the blessing you are in our lives.

    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. #96
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    This is good news, Rose.
    Blessings to you,
    ANN
    There comes a time when silence is betrayal.- MLK

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  13. #97
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    ((((((Hugs to All)))))) ~

    ANN ~

    Thank you so much for your continuing support and for your blessings.

    Jim seems to be at a plateau now. I noted this evening that his urine is rusty, and I insisted that he increase his water intake. He is sleeping more now during the night and in the morning, which means his water/fluid intake is less. I pointed out that the bottle of water that was on his tray yesterday is still on this tray today. He tells me that he's taking in more fluids, but the evidence is contrary to his claim.

    I have to get on his case regularly, and it feels like nagging, which I don't like to do. I told him today that I don't want to take him back to ER for dehydration, so he'd better start drinking up, while he's awake.

    When I returned from my walk this morning, Jim said, "It won't be too long before we'll be taking walks together."

    How do I respond to that? His SATS are 91 on 2.5 liters today. He's out of breath walking from the bed to the bathroom and back. It takes a lot of effort for him to sit up on the side of his bed to eat, or to stand up so we can change his briefs and clean up.

    I just smiled, "Well, honey, you'll have to be off of O2, because I can't drag this concentrator around the neighborhood." He does have a tank, but he wouldn't get to the end of the front walkway even with that.

    Numerous times every day and night, I have to remind Jim to check his nasal cannula, because most of the time it isn't in his nostrils. He doesn't seem to be able to grasp that the nasal prongs should be facing toward his nostrils, instead of away from them, when he puts on his cannula. It's such a simple thing, which I've explained to him repeatedly, but he still seems confused. Perhaps this is lack of oxygen to his brain, because his cannula has been off for too long. He always tells me that it's only been a few minutes, but he has no concept of time.

    So, I worry about Jim. I see progress, but I also see decline.

    I'm also thinking quite a bit about his appointment with Dr. K. How we're going to get there. How he'll be able to manage getting dressed, ready, and being away from his bed for a couple of hours. It's important that we keep this appointment, because Dr. K wants to assess Jim in person, and that is reasonable. I just know that it will be a major ordeal.

    Taking it as it comes is the only option. But it doesn't stop me from worrying about what awaits.

    Thank you all for your love, prayers, support, and friendship. We love you and pray for 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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  15. #98
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    Rose, knowing in advance that the appointment is coming, could John arrange to take you and push him in in a wheelchair?
    Virginia

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  17. #99
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    Dear Rose, when is the appointment with Dr K? I want to put it in my calendar and say special prayers that day.
    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. #100
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    ((((((Hugs to All)))))) ~

    Donna ~

    Jim's appointment with Dr. K is on Friday, 5/31 at noon Pacific. Thank you so much for your prayers.

    When John was here on Friday, we talked about Jim's appointment with Dr. K, and John said that he was available to transport. We can use the O2 tanks in the car and at the doctor's office/medical center. I'll have to get a supply of 2 more tanks from the vendor next week, as one tank lasts about 4 hours.

    I'm thinking about getting Jim a portable O2. I'll see whether we can get that through his DME supplier, when I call about the tanks. If not, I'll buy one.

    I ordered face masks for Jim, which he tried today. Both kinds are too small for his face, although they are labeled "adult" size. I'll ask the DME supplier for those too in XL. Jim's nasal cannulas just don't fit him properly, because of the shape of his nostrils.

    So, now I have 8 face masks to add to our growing list of supplies we don't need/can't use. I should research "Free Clinics" to see whether they accept donations of unused medical equipment. Yesterday, I found an unopened box of supplies containing three boxes of colostomy pouches, 10 per box.

    Jim is feeling a little stronger, and he's intentionally walking from bed to bathroom to pee as often as he can every day. He goes without O2 for a short period of time, but by the time he gets back to bed, he's huffing and puffing. He informed me that this is his "exercise." He's also saving me bending over to take off/put on his briefs.

    NUTRITION

    Jim's appetite is excellent. I'm keeping him well fed on organic food.

    Two things we've discussed: reducing his sugar intake and increasing his consumption of Orgain shakes. To both, he responds to me, "I know. I know."

    Today, I flat out told him that I don't want to hear "I know" any longer. "Since 'you know' then 'you know' that Orgain is the best thing you've got going for you along with CBD/THC. So, why aren't you drinking it every day? And drinking only half when you do drink it?"

    He told me to get the Orgain shake out for High Tea. As long as I also brought the TEA! He drank half of it. He'll drink the other half tonight, because I will bug him about it at bed time. I'm forcing him to do everything else. I'm going to force him to drink Orgain!

    WOUND CARE/DR. K VISIT

    I changed his wound dressing today, and the site looks wonderful! I am so grateful for this healing. The $90 alternating pressure mattress overlay is doing a great job. And the motor is practically silent. Jim says that he is very comfortable on the mattress. He's sleeping more and better now than he was, before he had it.

    Tuesday, Nancy will be here for Jim's port blood draw, wound evaluation, and to catch up. She didn't visit last week, as there wasn't a blood draw, and Jim was stable. And, he still is.

    It will be interesting to meet Dr. K, who might be surprised, when I show up with Jim. (I should warn him ... ).

    I want to say to him, "Well, a few days after Jim was released from the hospital, you called leaving a message that I should return Jim to the hospital. You were concerned about his recurring fever. He hasn't had a fever since (I'll have to check the chart for the date, but it's been awhile). He is well hydrated, with good vitals, good urine and bowel output. He has an excellent appetite. We treated and cured his wound. And we saved Medicare a ton of money."

    "Also, I provide 24/7 care, on call at all hours. No pooping his pants waiting for an aide. Oh, and since I am with him 24/7, I noticed when he was severely dehydrated and took him to ER. If he'd been in that facility, we wouldn't be here now, because he wouldn't be here now. By the time one of the staff checked on him, he would have been in a coma, or dead."

    Jim had a jug of water with a straw on his tray in the facility. Like that would keep him hydrated for any length of time. They would have interpreted his babbling as dementia. Would they have taken his temperature to know that it was 103 degrees?

    But, I won't say any of that, of course, because we want Dr. K on our side. And when he sees us, he will know that Jim has been cared for properly.

    I will come prepared with a list of questions. I will ask to see the images of Jim's tumor. Yes, I do want to see it. I want to know what he has inside of him so I can focus healing energy on eliminating it. Of course, I have been doing that all along, but I don't have the image in my mind.

    Of course, we will ask about Jim's WBC and platelets. When should we be concerned? Does Jim need another shot of Neupogen?

    NOT ALONE ANYMORE

    When Jim went through his RA flare and breast cancer scare in 2015, I couldn't go with him for any of his appointments. In 2016, when he saw our PCP and the x ray revealed a mass, I couldn't be with him. I couldn't be with him for his biopsy or appointment with Dr. H, our wonderful now retired pulmonologist. Or when he had his port placed.

    On Jim's birthday in 2017, I did accompany him to his first appointment with Dr. P, while John stayed with Jonathan.

    But that was the last time I was able to be with Jim for his appointments, his tests, his hospitalizations, until April 17, five days after Jonathan passed, when I road in the ambulance with him to ER.

    Jim went through all of that alone. Now, I am able to be with Jim, and he tells me constantly how much that means to him. To have me beside him. To have me to speak for him, to explain things, to sign things.

    Jonathan and Michael adore Jim. They knew that the other person, who was supposed to be their dad, abandoned them. Their hurt was quite apparent to me, as I tried to fill in the gaps he left behind. Then, Jim appeared literally on our doorstep, and we all fell in love. Jonathan and Michael finally had a true DAD in every sense and beyond. Anything they needed, he provided. From changing diapers to changing colostomy bags in the dark with a flashlight. From G tube feeding to deep suctioning. From lifting and carrying them to holding them, comforting them, crying for them, praying for them, and standing watch at night at home or in the hospital.

    Now, they're wonderful Dad is suffering, and they understand his suffering so well. Perhaps, they wanted the care they received for their dad. I was always there for Jonathan and Michael for every test, hospitalization, everything. Now, Dad needs Mom.

    We all need someone, who loves us, in our corner, fighting for us, figuring out what confuses us and what we don't understand. Being our voice, when we can't speak. Being our brain, when we cannot think. Being our advocate, when it's all too much for us.

    When Jim thanks me for taking care of him, I now say, "Well, obviously, this is why God put me here. Caring for our boys and you. We belong together. And that will never change."

    Thank you, Donna, and all of our dear friends here, for your love, prayers and continuing support. We Love You All and pray for 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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