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Thread: CN Central: September Updates

  1. #21
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    Sounds like a wonderful day! Friends and flirting with pretty girls! I hope you can get the rash cleared up... Praying that Jon remains happy and healthy. For certain he is LOVED.

    Kathleen's surgery is Sept 22. Next Tuesday so less than a week away. I'm very nervous but by this time next week it will be done. We will be leaving on Monday night. Hopefully be home Wednesday. Thank you for any and all prayers...
    Mary Grace

  2. #22
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Mary Grace)))))) ~

    Thank you for reminding me of the surgery date, September 22, Tuesday. Ingrained in my brain now!

    A return home on Wednesday? That's a fast turn around. I will pray that Kathleen is ready and able to go home on Wednesday. I know the hospital is a No Fun Zone and it's "let's get out of Dodge as fast as we can." But if she needs to stay in for an extra day, I hope that will work out for all of you. As much as I don't like Jon being in the hospital, I dislike even more having to return, if we're released too soon. I know you know what I mean.

    Be sure you take home all of the freebies you can get from the hospital to assist in her care. Will you be changing dressings? Grab up everything they have!

    You can count on my prayers every day from now through forever.

    Healing thoughts and strengthening prayers ~

    Love & Light,

    Rose
    Mom to Jon, 48, (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 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  3. #23
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    Rose thank you so much for your kind words and powerful prayers. You're right about being prepared for another day just in case. I know I need to be absolutely sure that I can handle her aftercare (dressing, toileting,bathing, and transferring from the chair,etc.) She will have a short leg cast so no bandage to change. I think the most important thing will be to keep her leg elevated in order to keep the swelling to a minimum. I also need to be sure her pain is managed before we leave. I'm not sure how long that will take or what pain meds they will allow her to go home with. We have a neighbor who will be helping us build a small ramp for her chair. We have some fun plans for the weekend to keep us busy...
    Mary Grace

  4. #24
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    Rose, Tell Jon I think he has a very clever flirting strategy! :) He is indeed LOVED. I hope he continues to improve. Forgot he poops the other way LOL my bad dear! Spa treatments and tummy rubs always make me feel good psychologically. The person who gave me the run around apologized yesterday so yay! I liked her more after that. It was actually a paperwork mix up so certain information was not passed to me or her by her higher ups. So she didn't know she had to contact me to cancel. Jeez. Oh well. As to my friend situation, my best friend who saw the outburst seems to have completely forgiven and forgotten it. That's why I love them. They never cease to amaze me. As for the jerk who screamed I have found a temporary solution to keep the jerk away from my friends, and me for that matter. It requires more walking but it makes all parties happy so the walking is a tiny price to pay and I am working on a more permeant solution that I hope will come through in time for a very special event(related to their creative work) at the end of Oct that I don't want screwed up in any way and I certainly don't want to skip the event due to transport issues either. Pray that works out! I don't want to let the event organizers down by not going!

    Mary, best of luck with Kathleen's surgery! I'm praying too.
    Last edited by funnylegs4; 09-17-2015 at 09:30 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  5. #25
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((HUGS TO ALL)))))) ~

    Yesterday, Jon, aka Captain Mysterio, was peeing over 100 cc/hr. Today, his output has slowed down considerably to 25 cc/hr. It had been 80 cc/hr this morning, and then he just slowed way down. No rhyme or reason. Maybe some gunk is blocking his output, although he's not been producing any significant gunk in the past week.

    The periodic doses of MOM only seem to stimulate one day's worth of BM, and while it is substantial, it's not regular. So, he is constipated. Today, we gave him the full dose of 4 T of MOM, with the prayer that it will jump start his bowels, and that will last for a few days.

    His belly is distended, as per usual in this scenario. Gas, fluid, bowel ... and of course, his meds, which aren't being excreted.

    As the day wore on, Jon's temp rose from normal to 102 degrees. At that point, I gave him 325 mg of Tylenol. Then he began sweating. Out come the toxins causing him the temperature.

    Mind you, it was 103 degrees outside today. But the humidity was low, which was helpful. We've been running the a/c since noon.

    His temp has come down to about 99.6. SATS are struggling to get above 89. We've been removing his trache plug to cough, and he's produced some thick, green mucous. We also suctioned once. So, naturally, we are fearing a UTI/pneumonia repeat.

    But, we are praying that it is a repeat of the last time this occurred, and all he needed was a good BM to return to normal.

    Last week, I was so overconfident that Jon was just fine that I scheduled dental appointments for me and Jim. I get a cleaning, and he gets his two teeth drilled and filled. I'm Weds. and he's Thrs. I also scheduled our dear friend/former neighbor to visit us to cut our hair (she's a stylist, who works in a local salon, but she comes to us to make it easier for us). Oh yeah! So brave of me, eh?

    Of course, I'm worrying that Jon's getting ill again, and "what was I thinking making those appointments?!"

    The plumber's receptionist called last week and left a message about visiting us to assess our plumbing and remodeling needs. I looked at Jim, and we both shook our heads, knowing full well that we can't plan on anything of that magnitude. And that's proven to be true, when we're now wondering whether we'll make it to our dental appts and be able to have our hair cut.

    We are holding on tightly to the positive approach that all will be well and will work out as it should. And praying. A lot.

    Praying for all of you and your loved ones too ~

    Love & Light,

    Rose
    Last edited by Earth Mother 2 Angels; 09-20-2015 at 07:48 PM.
    Mom to Jon, 48, (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 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  6. #26
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    Rose, Praying that a great BM will resolve all this. Wow 103!!! That's hard for me to imagine. We get mid to high 90's and that's awful. I hope that you can get all your appointments in also. I'll be keeping those prayers coming and positive thoughts headed your way.
    Mary Grace

  7. #27
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    ((((((HUGS TO ALL)))))) ~

    Thank you for your prayers!

    ((((((funnylegs4)))))) ~

    I'm glad that you've worked out the issues with your friend, and you're right to separate yourself from the "jerk." We don't need toxic relationships. I will pray that your transportation issues will be resolved easily so that you don't have to worry about attending the special event. And, I apologize to the gal who didn't inform you of the change in your appointment, as I went on a tirade about ineptitude. However, someone was inept in not telling her, so that she knew to inform you. So my point stands.

    The more channels of communication that information has to travel through, the greater the chances are that someone will screw up. Murphy's Law.

    Be well, happy, and strong!

    ((((((Mary Grace)))))) ~

    One summer, years ago, when my dear friend Liz (Pansy), visited, it was 112 degrees here. I took her on a very short walk to see the golf course, and I was gasping. She was used to it, as she came from a hotter climate than ours. And she had cancer, but she was fine, compared to me. Ever since then, our summers have been blistering, and I am a sweat factory. I used to be able to tolerate heat better in my younger years, but it seems like that summer with Liz was the turning point in my tolerance level.

    We had a cloud cover today, and the sea breezes were very present. On my walk, I stopped on the sidewalk of our main street, and I took off my cap, spread out my arms, and I just let the breezes waft over me. It was glorious. Anyone driving or walking by probably wondered what I was doing. Well, I was praying, giving thanks for the coolness. I had been in the sun, walking, sweating for 2 miles, and that shade and that breeze was perfect.

    You, Kathleen, Rich, and your family are in my prayers tonight. And I'll be there with you tomorrow. All will be well, dear friend. Angels are watching over Kathleen. I'm sure of this.

    OUR UPDATE ~

    Jon had a good night, slept well, with low urine output. We irrigated his catheter at midnight, and he did produce more, but certainly not as much as we had hoped. We have to factor in the sweating, which occurred after I gave him Tylenol, and the Tylenol, which does affect the kidneys, and the MOM which directs fluids to bowels to get them moving.

    And did it ever work! Two bags full today. Like a week's worth of BM in a single day. Astonishing, actually. But, now he's stopped producing. So we see what tomorrow brings and go day to day.

    Jon had SATS of 97 today to our happy surprise. Heart rate normal, temp normal. Belly less distended. Urine still slow.

    We irrigated his cath in the morning and again early evening. Output is still slow, but color is good, and output is continuous. What more can we do? Not much really. Clinically, he seems to be fine. Vitals are good.

    I had to call our dentist's office today to send in my script for Amoxicillin before my cleaning. I had rheumatic fever, and I have RA, so I have to take it as a precaution for my heart. I told her that Jon had been ill yesterday, but that Jim and I are still determined to make our appointments, but to be prepared if we need to cancel. It won't be by our choice, but by necessity. We are blessed that our dentist really understands our situation, and that she and her staff love us. Well, they love everyone, actually, because they are just truly lovely people.

    In fact, I know that I'll be hugged a lot on Wednesday, when I go in, and asked lots of questions about Jon and Jim and how I'm holding up. I'll have to be concise, because I'll need to get home for my hair cut! It's silly, I know, but this is important to us, because fussing with our hair is just one more thing we don't need to do. If Jon is ill and needs to be hospitalized, I need to have easily manageable hair. I don't have time to style and fluff before I run off to the hospital for 12 hours. These are the kinds of things I think about when Jon is ill.

    For now, all systems seem to be go ... we'll see what tomorrow brings ~

    Love & Light,

    Rose
    Mom to Jon, 48, (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 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  8. #28
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    How is Jon today Rose? Hopefully back on track. I know the nasty heat and humidity has to be miserable for him. I know it bothers Tyler. We are flushing him with lots of water to keep him hydrated and hopefully to dilute his urine. He has another UTI brewing (or maybe the last untreated one that just never went away). Took another sample in last Thursday and have heard nothing from his urologist. Put a call in this afternoon trying to get some answers, but no call back. Have to head to the mountains on Thursday to get the boat down for the winter. Sure hope Tyler doen't get any worse while we are there. Our boys are so complicated.
    grandmother of Tyler (22): 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."

  9. #29
    Distinguished Community Member andromeda31's Avatar
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    Happy fall!

    I had started a big long post for an update, but it disappeared suddenly so I have to start all over! Anyway, things have been really busy here since school started up. Brandon is in cross-country so he has practice & meets. Boys have piano lessons, religion class, and this isn't even counting in all the extra one-time meetings and such. Basically I have not had any free time! Oh, if that weren't enough, our basement flooded a few weeks ago. I am still cleaning that mess up. It was only an inch of water, but it was over the entire basement. The sump pump failed. We now have a new one, plus 3 new dehumidifiers! I had carpet cleaners come today and clean our living room carpet (which was nasty) and the stairs to the basement and the landing area down there. Thankfully, the only carpet down there is the landing area. The walls are up for future rooms, but they are not finished off yet. 9 September 046.jpg9 September 047.jpg I was glad the church we go to, lent us their carpet drying fans to use, that really helped too. I am glad things are dried out now and I am going to return those tomorrow. I'm not looking forward to seeing our power bill after running those plus 5 dehumidifiers 24/7 for a few weeks! There is one little chunk of drywall that we are going to need to cut out but it isn't in a major area (future 3rd bathroom). Wood pellets that exploded from absorbing water were leaning against that one spot and it looks like moldy. But it is unfinished drywall so no big deal to cut that piece out and put up a new one. (we are handy enough to do that ourselves) It did help me to get rid of a lot of clutter that I had just taking up space. In the sections that I am done cleaning up, it feels like a new house again!

    Caitlin is recovering slowly but surely. She is completely off the heavy duty pain meds now. Yay! Seems much more herself now. She has been going to school for half days (mornings). Tomorrow is her first full day so wish us luck! I don't think she will make it a whole day. I am thinking I might say that I will pick her up at 1pm. They normally go til 3:10 and I had been getting her at 11:30am. That way she won't have the long bus ride yet. They had off today, just a random day off but it was nice for me to get a lot done at home without having to drive to school multiple times. My kids are bussed but with her half days and Brandon's practice it takes a lot of my time all that driving. Good thing I like to read, I keep a book in the van always!

    She still has a lot of leg pain, but we started baclofen a few days ago. I had never wanted to go on that before since it can increase seizures, but now that she is well controlled, if she has an increase, I will know it is from that. They had offered baclofen to us in the past but I didn't want to add another variable in the seizure issue. Anyway! So far, so good with this new med! I felt that her right leg seemed a lot looser when I was doing her cares lately. We have to go up slowly on this med, tomorrow will also be her first day to get it 2x/day. For the first week, it was just at bedtime. I am also taking her down on the valium while going up on the baclofen. This is another reason I think 1pm will be good enough for a school day for the next week, then I can give her valium myself at home. I don't want to have to keep giving new dosages and have them trying to get it correct. I am a bit of a control freak about the meds! :) I am sure y'all can relate to that!

    One bad thing is she still has a little trouble spot on the base of her incision. There will be like a tiny spot of pus right after getting out of the shower. It doesn't quite want to stay scabbed over. Right now I just have been keeping it clean and putting a bandaid on it and changing the band aid frequently to keep it dry. Ugh. She has an appointment on Oct 1 with pulmonary for post-op lung function testing (kind of a joke since she can't blow good enough to do what they want)...but I think I might call and see if ortho can peek at the incision if it doesn't close up by then. She does have some good times though, here she is when we are waiting at the drive thru to buy her some fried cheese curds for working hard in PT. Oh, more good news-she got auth for 2x/wk PT! Yay! 0917151128.jpg

    Thinking of everyone here and hope that things are going well!

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  10. #30
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((HUGS TO ALL)))))) ~

    ((((((Tamie)))))) ~

    I hope that you heard from the urologist today on the results of Tyler's UA. It seems like he has one ongoing, continuous UTI. Any more thoughts/consideration of his kidney stones as the culprit? I hope you're able to go to the mountains tomorrow to retrieve your boat, and that Tyler is able to tolerate the travel. Are you staying there or is it an up and back in one day trip? Is it cooler there than at home? I wish that glorious cooler weather would return, and that we could get more than ONE DAY of rain!!

    Healing prayers always on their way ~ Please keep us posted ~

    ((((((Lisa)))))) ~

    A flooded basement is exactly what you did not need! Yikes! What a lot of work for you. But, you turned the negative into a positive, by recognizing that 1) it could have been worse, and 2) you got in some serious decrapifying.

    Good news that Caitlin is improving and off the pain meds. What does the surgeon say about the area, which is weeping and not healing on her site? Is this area, by any chance, rubbing against something in her chair? Or her clothing (like a waistband)? Just thinking of possible irritants as a cause. Was she able to manage the longer day at school today?

    Prayers that the Baclofen works and for NO SEIZURES! It's always scary to start a new med. Med Control Freak? You? Me? All of us? Yeah, I think so! I'm still kicking myself for giving Bactrim, when I knew it had caused seizures in the past for Jon. Do you know the reason why Baclofen can cause seizures? Does it interact with seizure meds (that's what Bactrim does)? Maybe blood levels would be warranted, if so, to make sure that Caitlin's levels remain therapeutic.

    Caitlin looks wonderful in the photo, and look how straight she is! Fantastic! Fried cheese curds ... I had to think about that for a second, then remembered you live in Wisconsin.

    YAY! PT 2x/wk! YAY!

    When I used to beg for PT for my kids, and they'd be denied, because the powers that be decided they didn't need PT, I used to say, "Everyone could benefit from PT! I could! You could! And we don't have disabilities!" I just don't get why it is so hard to obtain PT for our kids. All these years later, and you still have to fight to get it. Shaking my head ...

    Healing prayers always on their way ~

    OUR UPDATE ~

    Jon's low urine output was remedied when we put his compression stockings on. Yes, it was that simple. We hadn't been putting them on him, because it has been so hot and humid, and we don't want to increase his temp. When his urine slowed down, even after the irrigations, we agreed the stockings were our best bet. And we were right, because he's urine output is excellent now.

    All vitals are really good, and he's happy.

    However, the BMs stopped after his enormous output on Monday, so tonight, he will get some MOM, and we hope that it will bring him back to regular movements. I'm wondering whether I should just give him 1-2 T of MOM every day. I just don't want to go there, unless it's absolutely necessary. I don't want to create a dependence on MOM.

    I made it to the dentist today for the cleaning. Unfortunately, I have 4 cavities, two of which are under crowns. That will be two, or probably three, 2 hour appointments for me. This is what happens when I go 11 months without a cleaning, and I don't use the MI paste every night before bed at 2 or 3 a.m., when it's all I can do to brush my teeth and collapse. How many times did I want to reach for the phone to make an appointment, but deferred, because Jim was ill, or Jon was ill, or we were expecting a power outage, or we had nurse visits, or ...

    Our dentist didn't scold me, because she knows and understands our situation. And I laid it out for her rather succinctly today. So, she suggested that when Jon is having a good day, I call in to see if she has a 2 hour time slot available for me. I love this woman. She is truly wonderful.

    And I got lots of hugs today. As predicted. And that helped me deal with the reality that I'll be back "in the chair" for a few visits. I've been through worse. And I know how to relax and go with the flow, when I'm in the chair. I just have to get it done. No delays allowed here, as the decay is pretty significant.

    And once that is sorted out, I will likely feel better and have more energy. I may be dreaming there, since I feel like a wrung out wash cloth at the moment.

    Jim gets to be in the chair tomorrow. And that will help him too. I just hope that he can manage keeping his mouth open without jaw pain. His main complaints are neck, shoulder and upper arm pain, and spending time in the chair affects those parts of the body the most in my experience.

    Our friend did cut our hair today, and it was wonderful to see her. We may not feel better, but we look better!

    Another heat wave is on the way, and I just want to be here



    Please join me ~ Your smoothie is waiting for you ~



    Love & Light,

    Rose
    Mom to Jon, 48, (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 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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