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Thread: Jim's Update

  1. #941
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    Oh Rose, Jim's cough is such a worry. Is there a way that you can borrow a phone and film it for the doctor? Anyone younger with a smart phone would be able to film and share (I'm not good at this but the kids know). If only the doctor could see what is happening at home. I think the steroid inhaler is a good idea. It's time for the big guns now - anything to help Jim cope with his treatment. And of course it's worth trying the nurse's cough medicine too. I hope and pray that Jim's cough will abate and he will be able to have radiation next week. I'm so glad that a driver has appeared for you!!! Sending much love and prayers. 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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  3. #942
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    Rose, Donna must be a smart lady. She is right, it is time for the big guns. Please get Jim to use the inhaler with steroids even if he is against it. He can't keep waiting.
    I am sure that Doctor K knows that.
    Virginia

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  5. #943
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    Worried Rose, you skipped a post for 4/3. God knows you are too busy. Busier than “too busy.”

    Prayers to you and Jim and Jon and the nurses and John.

    Love,
    ANN
    Last edited by stillstANNding; 04-04-2019 at 06:41 PM. Reason: Jon autocorrected to John
    There comes a time when silence is betrayal.- MLK

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  7. #944
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    Default The Future

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

    ANN ~

    I thought that I would give everyoneís eyes a rest.

    Donna ~

    Jim took some Delsym this morning. He fell asleep, and when he woke up an hour later, he couldnít breathe. He said it was worse than it has been. So, Delsym is going in the trash.

    Dr. K hasnít seen Jim cough as he does at home, and I donít know whether that would make a difference. Jim needs to see a pulmonologist. Weíll ask Dr. K for a referral to one of our favorites, who have treated Jon and Michael. I need to email Dr. K for a script for the new inhaler.

    I visited your blog today and read your post about our truisms! I posted a comment too. Thank you for all you do, Donna, for all of us.

    Virginia ~

    Donna is a very, very smart lady! And a close, dear friend for over 17? 18? years. In fact, if you havenít visited her blog yet, I highly recommend it:

    https://www.donnathomson.com/

    As well as her book, ďThe Four Walls of My Freedom.Ē

    Jim agrees to try the steroid inhaler. We know time is of the essence.

    TODAYíS UPDATE

    Jim

    Last night, Jim and I had a nice dinner for a change, before he went to bed for a few hours. He had a few coughing spells, but the worst was after taking Delsym, when he woke up out of breath.

    It worsened as the morning went on. I brought out Jonís O2 concentrator and found a nasal cannula, hooked him up to 2 liters. His SATS increased from 89 to 95-96. He was on for four hours, including when John visited to turn Jon.

    He said it helped the tightness in his chest. Off of O2, heís maintaining SATS of 91-93, like Jon is. Thankfully, Jon is not needing O2 right now.

    So, weíre going to keep giving him some oxygen therapy on and off as needed. I will ask Dr. K for an O2 concentrator for Jim, in case they are both in need at the same time. We may be approaching Jim needing home health care, aka Jonís nurse, and that will facilitate getting these supplies and equipment. Iím just grateful that we have it now, and they both donít need it at the same time.

    Jonathan

    John visited to turn Jon, and we went over the new protocol.

    I couldnít get the Calmoseptine off of his backside, but I did the best that I could. Then I mixed Calmoseptine, fungal powder and cortisone in my hand to apply to his wounds. John helped me by pouring the powder into my gloved hand full of Calmo.

    I used less cortisone than the WOCN recommended, because I donít want Jon to have an adverse reaction to the steroids. Iím pretty sure this will be the last time I agree to using hydrocortisone. Itís just too risky for Jon.

    I forgot to put the Aquacel on his bleeding wounds, so we had to turn him again to do that. Poor Jon, he was wiped out.

    When John saw how poorly the WOCN had placed Jonís underpads, he just shook his head. ďDoes he pee from his shoulders?Ē I laughed.

    THE FUTURE CONVERSATION

    When John arrived, I grabbed Jonís chart, so John could give me all of the days, when he will be out of town until the end of July. A couple of tournaments. Two 5 day vacations. One annual weekend away. Once in a lifetime opportunity to golf in Pebble Beach weekend.

    We discussed getting extra help, even if just to turn Jon. Part of the problem is that those, who might be able to help us in his family, are usually at these events with him. The vacations are with the entire family.

    As I explained to him my constraints with trying to find someone to help us, he started mulling over possibilities. First, he offered his daughter, ďSheís 16, and she wants money for gas, for clothes, for whatever. So, for $10, sheíll take Jim anywhere he wants to go. I donít know why I didnít think of this before. And there are times my wife could also drive Jim.Ē

    And while itís difficult to employ someone to care for Jon, which is my job, and what Iím paid to do, we might be able to employ someone to be Jimís personal assistant. Thatís vague enough.

    Jimís personal assistant could get the van smog checked. Turning Jon is one of Jimís responsibilities, so we could skirt around that. Putting together the furniture sitting in our garage to serve both Jim and Jon was Jimís ďjob.Ē Transporting Jim to/from everything.

    Itís something to consider, and so we are.

    THE HARDEST PART

    When we were turning Jon, John whispered softly, ďHe doesnít look good.Ē He was referring to Jim.

    I walked John out to his car, and we continued our conversation about including his family in meeting our needs and trading responsibilities. His niece, and weíve known her since she was a toddler, is now a surgical nurse. He wants to engage her help if possible.

    John said, ďWe need to get Jim in for the radiation, and Iím sorry that Iím going to be out of town. But I will be here for you both as much as I can.Ē He sighed, ďAnd we have to start talking about getting help for you. You canít keep doing this. In five years, you wonít be able to do this anymore. We need to figure something out.Ē

    Five years?

    All I can think about right now is today, and then next Monday, when Jim gets his first radiation treatment, and what will happen after that. I canít think about 5 Years!

    Life turns on a dime. Nothing is promised.

    Yet, I know that, for a million reasons, I must think about 5 years from now.

    Thank you all so much for your love, prayers, support, and constant 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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  9. #945
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    Hi Rose, thank you for your beautiful comment on my blog. I am so glad that younger caregivers will have the benefit of your wisdom. You are our wise elder.
    I know you are hanging on by a thread with all there is to do every day. But if you want a visit to help with putting a future plan in order, just say the word and I will be there.
    John's ideas for his family to help out may just be what you need. I will hope and pray this is the case. I'm so sorry that Jim is so sick - would it help to film him coughing in order to get an appointment with the pulmonologist right away?
    I am putting something small in the post for you today - just something to cheer you up hopefully. You are not alone, Rose. So many of us love 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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  11. #946
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    Rose, I am so sorry that Jim is so sick. I give thanks constantly that John is there, and now he is trying to help you work out a plan for the future. That is comforting to know that someone who cares for the whole family is there in this time of need.
    Virginia

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  13. #947
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    Unhappy Jim Is In ER

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

    This morning Jim said that he needed to go to ER. He was on 2.5 liters of O2, with SATS of 93. Moving, walking, talking, etc., and he loses his breath. Off of O2, his SATS were in the mid-80s.

    I gathered his clothes and started packing his bag with underwear, his denture stuff, tea bags, his inhaler, Ricola, CBD capsules Ö it always has his CD player and CDs in it. I sent the cell phone charger too. I numbed his port for IV and blood draws. Heís prepared for admission.

    I called Dr. Kís office, spoke to an infusion nurse (protocol), and she agreed that he needed to go to ER. Dr. K is on vacation. Of course! She told me who the on call docs are for today and the weekend. Thankfully, not Dr. P!

    Jim asked for tea and scrambled eggs so heíd have food in his system. He couldnít eat the eggs and only drank half of his tea.

    I called 5 different ambulance services, until I found one willing to transport Jim. Two of them said to call paramedics. We donít need half of the fire department here. We just need to get Jim to ER.

    Two very sweet young women EMTs arrived within 30 minutes of my call.

    First, Jim had to pee! He said he was peeing neon triangles again! I canít imagine that is still happening from his PET scan. Then, Jim went into Jon and explained that he had to go to the hospital for some tests.

    Once he was loaded into the ambulance, they had to wait for clearance from dispatch and ER. The EMT took Jimís vitals, while I stood outside the doors, with my hand on Jimís ankle, the only place I could touch him. He kept saying, ďDonít worry, honey.Ē

    As they drove away, I stood in the street, tears streaming, waving to him. How I wish that I could be with him.

    Jim called to tell me that heíd had a blood draw in each arm, not his port, because they want ďfreshĒ blood. He had a chest x-ray. He was scheduled for a breathing treatment. Heís not able to talk for long, because he gets out of breath.

    Heís where he needs to be and receiving the attention and care he requires. Iím praying that the doctors are able to identify the cause, as in whether he has pneumonia or this is tumor-related.

    Thank you all for your prayers, love and support. I will update this evening, when I have more news.

    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. #948
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    I hope that Jim will be in good hands and that they'll find ways to help him. You're in my thoughts, Rose.

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  17. #949

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    Sending prayers up Jim. Sending prayers up for you and Jon.

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  19. #950
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    Default Admitted

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

    Jim has called several times today.

    He had a CAT scan, with contrast. (He just had one a couple of weeks ago.) He was told they were running a D Dimer test on him, but he misunderstood, I think. He thought they were going to give him blood thinner. The D Dimer test is to determine whether a blood clot is present. Shortness of breath and chest pain are symptoms of an embolism. I haven't had a chance to tell him this yet.

    His WBC is 1.1, so it's gone down from 1.6 since last week. His platelets were dropping last week too, so I wonder what they are now.

    In his last call about 3 hours ago, he said that he was being admitted at least overnight. He said the cell battery was fading, and when he gets to his room in the Cancer Unit, he will call me on the hospital phone. "I'm all right," he assured me. Then, the phone conked out.

    I did a load of laundry, loaded and set off the dishwasher, cleaned the kitchen, cleaned the bathroom, brought in the empty trash bins after Jim drove off in the ambulance, ate something, tended to Jon, who is now asleep, which means I'll be up with him all night.

    I was going to strip Jim's bed and put on clean sheets. I decided that I'm too tired to do that, knowing that he would likely be admitted at least for observation. I will rest on Jim's bed, if Jon is asleep at 6 a.m., just to use Jim's heating pad on my back.

    I felt the adrenaline coursing through me today. I suspect my BP was elevated, but I didn't want to know about it. What can I do? Keep busy, take care of Jon, be here for Jim, when he calls and help him remember things to ask or tell. I have to calm down to be here for both of them. So, I've been working on that. Housekeeping is a diversion.

    Equipment for Jim needs to be addressed before he comes home. If he needs an O2 concentrator, then he has to have his own. If Jon and Jim need O2, we're in trouble. Jon has a nebulizer, but Jim should have his own. As I said, I think that home health care is on the horizon now, which means Jon's nurse for Jim.

    I just pray that this hospital stay is better than Jim's last one around his birthday. He has to remind the night shift to close the door and be quiet, so he can get some sleep. His taste buds are off, so he won't like any of the food. He's willing now to try the steroid inhaler, so they won't have to keep hounding him about it. I hope that he gets one of our favorite pulmos, but we don't know which ones serve the Cancer Unit. We met all of them in ICU with Michael and Jon.

    This evening, as I looked out on our backyard, I listened to the sound of the fountain in Michael's pond and watched the water shoot up through the pipe. I haven't cleaned the waterfall pump, because it's awkward and I'm afraid of falling. I'm sure John could do it for me. The sound of the water working again in Michael's garden comforted me. And I thought, "I did that. It was hard work. But I needed it fixed. I fixed it."

    From Diamond Rio's song, "I Believe": "There are more than angels watching over me."

    No matter what it is, whether it is Jim or Jon in crisis, or cleaning out Michael's pond, God is giving me the strength to do His work. Michael is always near us. We are truly blessed in so many ways. We have all defied the odds repeatedly, which has allowed us more time together. While I want more time, as much time as there is forever, I must keep in mind how fortunate we are to have all of these years, which were not predicted for us.

    I remain hopeful that Jim is receiving the best care, and I've assured him that they are doing all of this to him to properly diagnose and treat him. His blood changed in a week, so other things could have changed too in that time, or since his last CAT scan. Cancer is a progressive disease. They are trying to get on top of it.

    But, I completely understand his frustration and exhaustion. He has been through the proverbial mill.

    I await his call. I miss Jim terribly, and he's only been away for several hours. He said this morning, "It will be easier for you, if I'm in the hospital, and you don't have to take care of me."

    "No. It is never easier for me to be separated from you. To not be with you, to help you, care for you, intervene for you. It's much more difficult for me. But you have to get help, because what we're doing isn't helping you."

    And so I wait.

    Thank you all so much for your love, prayers and support. Thank you, Joan (agate) and Marcie. We deeply appreciate your good thoughts, positive energy and prayers.

    Love & Light,



    Rose
    Last edited by Earth Mother 2 Angels; 04-06-2019 at 09:06 AM.
    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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