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Thread: Jim's Update

  1. #971

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    Platelets were pretty easy for Meggie. It was a long day. It took time for everything to get ready, and then it was usually a 4-6 hour infusion. But she was a little peanut and had to take it slow. Meggie had zero side effects and within a few days as feeling soooooo much better. Love you

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  3. #972
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Default Life: Wins and Losses

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

    What a night!

    JONATHAN

    At 2:30 a.m., I was tending to Jon, full of fluid, gagging. I suctioned. That made it worse, as it can do sometimes. I got the basin, and Jon vomited. I had so many things in my hands and needed to reach around to get other stuff.

    Jon was struggling, so I called loudly for Jim. I didn’t want to wake him up, but I needed help. He heard me about the third time and came in. I pointed to the box of masks for him, as he put on gloves. He held the basin, while I got rid of the suction catheter, gauze, and gathered a clean under pad to put under his chin, then a washcloth and towel, and a clean gown.

    It was a small amount, but some did end up behind his shoulder. He stabilized fairly quickly.

    We held his food as usual.

    Next, we discovered that Jon’s indwelling catheter was leaking profusely. I went to the garage to get a catheter tray kit, because I have no space to store anything else in Jon’s closet or room. I reinserted Jon’s catheter, with Jim’s assistance. We then changed the pad under his testicles, which was sopping wet. He had a good return after reinsertion, and the leaking has subsided.

    Jon had not slept all day or evening, which is unusual for him. He finally fell asleep this morning at 9:30. He held good SATS until 11:00 a.m., while sleeping, when they dipped into the 80s. We decided to put him on 1.5 liters of O2. He’s been asleep for about 9 hours now, has coughed a couple of times, but we can’t get his SATS above 89 on 2.5 liters of O2. I also suctioned once.

    I could have done all of this by myself, and I have many times, when Jim was in the hospital or not up to helping. But I knew that if I told Jim about Jon’s episode later, Jim would be upset that I didn’t call him to help. Jim didn’t do anything strenuous, and he was okay after we were done. Mostly he helped when I asked, “Honey, could you please hold this?”

    At 9:00 p.m. last night, I gave Jon 4 T of MOM, because he hasn’t had a bowel movement for 11 days. I’ve been giving him 2 T every other day, increased to 3T, and still nothing. It usually works by now. This is why Jon is filled with fluid and vomiting.

    Please, everyone, pray for poop. Thank you so much.

    JIM

    Jim has been sleeping quite a bit to make up for lost time in the hospital. He’s comfy and cozy in his fresh nest. He even slept through the gardeners yesterday, as they mowed the front yard right outside his window! Then he asked me if he’d slept, when he got up. I asked, “Did you hear the gardeners?” He shook his head “no.” “Yes, you slept.”

    His SATS drop periodically to 88-89. He does deep breathing exercises, then has a dose from his inhaler. We’re now in a situation, where Jim could benefit from O2, but Jon has the machine. He manages to get his SATS up to the low 90s. But, he shouldn’t have to be without O2, when he needs it. I have to do something about this, and I will. Even if we buy Jim a concentrator.

    We do have 3 portable tanks in the garage, intended for emergency use, as in loss of electrical power for the concentrator. I will just roll one in for Jim at his bedside, when he feels he needs a boost. But he still needs his own O2 concentrator.

    Jim’s peeing and pooping have stabilized. His stools are still a little soft and getting lighter in color. We haven’t heard any results regarding the testing of his bowels in the hospital. The longer he flushes out the antibiotics he was given, the sooner his bowels will turn to normal. We hope. Side effects can last for 2 months with these drugs.

    Jim’s meals yesterday: 2 slices of toast with marmalade, coffee (hospital), (home): cheese sandwich, tea, Pacific organic potato leek soup, 2 slices of toast. That’s 6 slices of bread in a short period of time. This morning he ate his breakfast cereal with almonds, raisins, banana, diced peaches/pears, coconut milk. A strawberry jam sandwich. Tea, coffee, lots of water, orange juice. He’s tolerating it all well.

    I still haven’t heard from the home health agency or Jon’s nurse about visiting on Friday to do a blood draw. I’ve explained this to Jim several times, and this afternoon, he said to me, “I’ve been thinking about what time I want to go in for my blood draw on Friday. 11:30.”

    “Honey, you aren’t going anywhere on Friday. Remember? Home health, Jon’s nurse, blood draw right here in your room?”

    “Oh yes. Good. I don’t want to go anywhere for awhile.”

    And that is the whole point of home health care.

    Palliative care equals comfort.

    We’re all happy to be together again, even if it’s rough going right now. If Jim was still in the hospital, and I revealed to him that Jon’s going through his “I need to poop” issues, I would bet Jim would check himself out of the hospital AMA to be here for us. I’d have to lie to him and tell him Jon is fine to prevent that.

    THE TAXES

    I have spent too many hours trying to figure out the new tax forms and where to put what figure. The IRS site is helpful to a certain extent, but I have specific questions about combining our personal and business taxes, which are not covered.

    I was trying not to cry, when I told Jim that I had to call the IRS for guidance. “You may not see me for a few days, as I’ll be on ‘HOLD’, but I’ll try to fill in as I can.”

    After going through a few menu options, “If you’re calling about X, press 1”, I spoke to a live person. Very nice, but she was just a go between to direct me to the right person. Next woman was also very nice, calm, but admitted that she only answered basic questions, such as, “When are my taxes due?” She connected me to a woman, who worked with me to figure it out.

    All three women agreed with me that this year’s tax forms are a nightmare. The second woman confessed that most of the people, who are working at answering our questions, don’t know how to do their own taxes this year. The third, and last woman, said, “You are not alone. These new forms were supposed to make it easier, instead, it’s a nightmare. I hear it all day long.”

    I laughed, “When you get home from work, do you take a valium?”

    She laughed, “No, but I go straight to bed and turn off all of the phones.”

    “Well, at least we got a laugh out of it today. We needed that.” We continued to laugh and chat for a couple more minutes.

    Actually, I made jokes with the other two women, who tried to help me. I know it’s a stress reliever, and it also creates a relationship between two strangers talking.

    The third woman put me on hold and returned with the answer, and together, yes, together, we figured it out.

    All of that took 30 minutes. I couldn’t believe how quickly they all responded. Or how calm and nice they all were. Maybe they’re all vaping.

    I didn’t claim Jon as a dependent for the first time in 49 years, because I couldn’t figure out how to do that.

    There is something new about qualified businesses,which I couldn’t understand. I may have missed out on a deduction there. But time is of the essence, and my nerves and brain cells are toast. I didn’t sleep at all last night, so I’m too tired to keep pounding my head against the government’s new brick wall.

    But hey! We’re getting a whopping $103 in refund! Time to start yacht shopping!

    THE RING

    This evening, Jim revealed to me that he often rolls his wedding ring on his finger, when he’s thinking. He realized that his ring is missing. I went through everything in his satchel yesterday, and it wasn’t there.

    With all of the commotion in the hospital, ER, CAT scan, hand washing, etc. etc. etc., it disappeared. It was just a simple gold band with three tiny diamond chips. The only time he ever took it off was when I cleaned it for him.

    I will find him another ring, of course, but it will never take the place of the one I gave him, when we took our vows.

    Maybe someday it will appear mysteriously. But I won’t hold out hope for that.

    Our rings are a symbol of our union and commitment to each other. Nothing changes between us with the absence of that symbol. Everyday our love grows stronger.

    Thank you callyflower and Tracy for sharing your experience with platelet infusion. It sounds very similar to blood transfusions, which Jon and Michael have had many times.

    Thank you all for your continuing 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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  5. #973
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    Dear Rose,
    Ahhhh, again I am happy for small mercies in your message (thank you SO MUCH for keeping us up to date on all your family!!!) - I am grateful that Jim is eating well and that he got some sleep. But I can't imagine poor Jon and what he is going through without being able to move his bowels. I hope that has changed since your message and that he's feeling better by now. Prayers. I am so sorry about Jim's ring. This is so sad and such a painful demonstration in a way, of how everything must feel like chaos right now. And those objects that anchor you and losing something so meaningful... well, it's just not fair. That said, you have the MOST meaningful PERSONS home with you and that's Jim and Jon. How you do it, I do not know, but your life is love in action. You inspire me and so many others every single day. But I can 'hear' the desperation and the exhaustion in your words, Rose. Even though you keep going and even get your blinking taxes done (and make friends with the women on the phone helping you) in the midst of everything!!!! I am glad they were kind and took the time to help you - that is a small mercy!
    Sending love and I hope that all is a little calmer in your house today. Donna xoxo
    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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  7. #974
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    Exclamation Waiting for the *ish* to Hit the Fan

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

    Here we go. Buckle up. Bumpy ride ahead.

    JONATHAN

    Last night at 11:30, Jon had a fever of 103.7. His heart rate was 142. His SATS were adequate in the upper 80s, lower 90s. We stripped him, bathed him with tepid water, and gave him 2 Tylenol.

    I started gathering stuff for his hospital bag, eg., meds, syringes, cups, colostomy supplies, because these can take a long time to get in the hospital.

    Gradually, his temp and heart rate began dropping, and while not normal, at least he wasn’t burning up. We decided to wait until dawn to make the decision to go to ER.

    I was absolutely wiped out, after the stress of Jim’s hospitalization and his and Jon’s needs once he came home. I have had very little sleep over the past few days. Going to the hospital with Jon means that I’d be on my own with Jon, as Jim is not up to going along with us. And, I’d be at the hospital 24 hours every day, since Jim can’t take the night shift any longer. So, Jim would be without my care.

    I checked Jon’s vitals every 1/2 hour, with the exception of 2 times, when I nodded off on his chairbed for 45 minutes each time. I gave him water via his G tube, bathed him, even shaved him.

    I prayed over him, begging for relief, because going to the hospital is so traumatic for him. The gurney is too narrow, hard, difficult for him to be straight without his legs falling off of it. ER is noisy and full of commotion. Hospital beds are so uncomfortable, and he already has these awful wounds on his rear end.

    By dawn, Jon’s temp was 100.7, and his heart rate was 125. SATS still the same. We decided to see how he fared during the day. He remained essentially the same. Temp and heart rate didn’t go up and continued dropping.

    As I mentioned, the issue is no bowel movement for 12 days. Not wanting to give MOM again during his crisis, I put a glycerin suppository into his colostomy stoma. He produced a very small nugget. But it’s a beginning. He will be getting 4 T of MOM tonight. I’m praying that will get things moving.

    I remembered that New Year’s Eve and New Year’s Day, Jon went through a similar crisis. His heart rate and temp didn’t get as high, but his symptoms were very much the same. I checked his chart for those days, and there it was. Also brought on by constipation.

    His urine output has been very good, so he has that going for him. I kept him well hydrated through the night and today. I put him back on his formula this morning at 30 ml/hour (his usual rate is 70 ml/hr). I wanted him to have some nutrition and more fluids. He tolerated it.

    We’ve been battling this same problem with Jon since 2011 before and following his hospitalization for over 40 days that winter. His last stay in ICU/Step Down was in 2012. Since then, we’ve managed to deal with these episodes and get him through them at home. Seven years is a pretty decent track record.

    My motto is “Trust Your Gut.” My gut has been all over the place in the last 18 hours.

    JIM

    Jim used all 4 hours of the O2 tank yesterday/last night. We have 2 more tanks. I haven’t had a chance to do anything about advocating for Jim to have a concentrator. But he needs one, and Medicare’s refusal to provide one, unless you’re O2 dependent, is inhumane.

    DMEs charge a fortune for rental, but if you look for O2 concentrators on line, they aren’t that expensive for a major medical device. Profit off of the lungs of people, who are gasping for air.

    I also haven’t had a chance to go to our pharmacy to drop off his nebulizer and inhaler scripts. Why couldn’t the hospital just call our pharmacy, so all I’d have to do is pick them up?! Grrr …

    Jon’s nurse is on board and texted me last night that she’ll be here tomorrow to admit Jim to the home health agency and draw his blood.

    While she’s here, I’m sure she’ll check on Jon, in fact, since I want her to get paid, I’ve asked her to schedule a visit to Jim and Jon.

    Jim has pain from his shoulder blade to his waist on his right side. He took his first Tylenol with Codeine this morning. When it wore off, I applied Aspercreme, which helped. He thinks he may have pulled it when reaching around to turn off the lamp next to his bed.

    He is sleeping as much as he can.

    He is also constipated now! His gut is gigantic. He looks like he’s 8 months pregnant! Very worrisome to me. I guess we need to cut back on the bananas now.

    TAXES

    I mailed the federal taxes today, then I prepared the state taxes. Much easier. State will go in the mail tomorrow, and then I’m done, and that stress is off of my plate. I'm a little proud of myself for getting this done. Ha!

    Donna ~ As always, thank you for your love, kind words and support. You are right about Jim’s wedding ring reflecting the chaos we’re in. Our rings are sacred to us, so we’re both saddened by this loss.

    My wedding ring is just a simple white gold band, which I found at our local British grocer and mentioned to Jim. It was a set, previously owned, and obviously worn for many years. Jim wasn’t making much as a school bus driver, and this was affordable. I also loved that it represented a lasting marriage.

    I’ll never forget when he gave it to me. I was in the kitchen preparing dinner. He walked in with a jewelry case in his hand. “I went to the grocer today, and I got you this.”

    He placed the engagement ring on my hand, and smiled. “Will you marry me, honey?”

    We shopped for his ring, and he insisted that it couldn’t be more expensive than mine. He settled on a nice yellow gold understated ring, with three diamond chips, one for me, Jon, and Michael, the family he was marrying.

    Okay, that’s the long story!

    Thank you all for your prayers, love, support, positive healing energy and walking with us every step of the way.

    We love you and always 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. #975
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    Oh dear, I can't stand that your beloved Jim and Jon are both suffering with constipation right now. This is serious, I know. We use Golytely gastro flush with Nick - is this an option for either one of them? It works like a charm in smaller doses (they give tons of it for pre-abdominal surgery patients, but we use about 150 mls per day if things are moving and more each day if Nick is bunged up). Nick is on domperidone to 'push' and golytely to 'pull'. His motility is very poor so without these meds, his stool would just sit in his colon for eons. I am not sure what is possible for your guys - it's so hard. I hope they have some relief very very soon. And you too, my dear Rose. And you too. I wish you could clone yourself so one version of yourself could lie down and rest for a good long while. I send you love and prayers and thank you again for taking the time to keep us posted. Good on you for getting the taxes done - WHAT A SUPERWOMAN you are!!!!! 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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