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Thread: What Is Next For Jonathan?

  1. #331
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    I hope everyone sleeps tonight, Rose.

    The egret is beautiful. Thank you.

    ANN
    There comes a time when silence is betrayal.- MLK

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  3. #332
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    ((((((Hugs to All)))))) ~

    ANN ~

    Thank you. Not a lot of sleep happening here.

    Jon fell asleep at midnight, woke up coughing at 3 a.m. and has been awake since then, trying to nap, but disturbed by coughing. Jim is quite fatigued (Opdivo), and he's not getting enough quality sleep, because he's relieving me at 3 a.m. so I can get a few hours of sleep (about 3 last night/this morning).

    CONVERSING WITH THE DOCTOR

    I've been emailing with our family doctor all day about Jon. Our doctor is a sweetheart, but he is overworked, and sometimes he misses the clues.

    He keeps telling me that he knows that I supplement Jon's food with iron-rich food. No, I don't. He's on Vivonex enteral predigested formula 18 hours/day. He can't eat orally. He has no teeth. He has a swallowing disorder. He has slow motility.

    Then, he said that as long as Jon isn't seizing, his levels must be fine. He said we should go with the clinical presentation rather than the lab results.

    We go by clinical presentation every single day. He has not had levels taken for over a year. We need a baseline, so that if he has a problem, we have it for comparison. It helps us to determine why he has breakthrough seizures. It's vitally necessary information. I've been dealing with Jon's seizures for 47 years, and Michael seized every day for 22 years. I know about seizures and these meds. Why is he questioning me?!

    It's not entirely the doctor's fault. He hasn't laid eyes on Jon since 2008. We can't take him in to see him at his office, obviously. And from 2009 to 2012, each year, Jon was in ICU for 8 to 47 days at a time. Of course, we had a plethora of doctors then.

    He's been our doctor since 2000, when he first started his practice. So very young and enthusiastic. He had a palm pilot on which he listed all of the things he was going to get for our boys. I just smiled, patted him on the shoulder, and said, "That's wonderful that you want to do this. But reality is that you won't get any of those things for them." Still, he continues to provide for Jon and advocates for him. We love him.

    HELP AT HOME WITH TURNING AND WOUNDS

    I texted Jon's nurse today to ask if she will have time to help us turn Jon and to check his wounds. Her response was that she didn't know. It's been 11 days, since Jon has been turned. Jim has not been up to it. Last Thursday, when she drew Jon's blood, we thought we'd turn him then. But she was in a rush, and it didn't happen.

    If she can't do this tomorrow, I will ask our doctor to order a wound care nurse. I can't keep treating his wounds without professional help and guidance.

    You know, I just don't understand this. Jim and I are elderly, and Jon is 49 years old, totally dependent, and we need help. Even when I ask for it outright, we aren't getting it. Why isn't Jon just as important as the other patients? Too many patients, not enough nurses. So, he suffers. We suffer.

    Again, I will have to raise Cain to get attention. I'm composing a letter to the new Executive Director about how all of the changes implemented under her reign have impacted Jon adversely, which also affects us.

    Now, it's time for dinner, bathing Jon, and hoping we all sleep tonight.

    Thank you for your love, prayers, support and constant friendship.

    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 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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  5. #333
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    Get the wound care nurse regardless. I think it will be a constant battle to get your regular nurse to do her job adequately as far as the wounds go.

    With pseudomonas in his urine and open wounds in the vicinity of the leaking, he is a ticking time bomb for skin infection, sepsis, etc. His wounds need to be cultured and treated accordingly.

    Hugs,

    C
    Last edited by callyflower; 01-07-2019 at 07:58 PM.

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  7. #334
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    ((((((callyflower)))))) ~

    Thank you. I just texted Jon's nurse and told her that I want a wound care nurse and asked her to schedule one. I said that his wounds are serious, draining terribly, and I can't deal with it on my own. Butt Paste only goes so far.

    She said she'll be here at 11, but she's always late. Her next patient is at 12:15, and she has to drop off Jon's lab work first. So that means she can't help us tomorrow. She replied to me saying that she will look at his wounds tomorrow and report to the wound care nurse. I've warned her that this is time consuming, and I want her to take photos. And I will still want the wound care nurse to visit.

    Jon scratched the crease between his left leg and groin, and it is excoriated. So we now have a new wound to treat. He's also scratched his colostomy area, and it's excoriated. So, now we have to keep his wrists restrained, so he doesn't keep hurting himself.

    Thank you for the hugs! Much needed!

    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 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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  9. #335
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    Thumbs up

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

    Jonís nurse changed the time for her patient after Jon, so that she could help us turn Jon and check his wounds. We did the blood draw first, and Jon gave us an excellent vein, which produced immediately.

    She helped Jim turn Jon and hold him, while I cleaned his mattress cover. Drainage, after 11 days, plus leaking, results in a mess.

    Then she came to my side to examine his wounds.

    1. I was using MicroKlenz as the cleaner. Wrong! I should be using SkIntegrity. Well, MicroKlenz is what Iíd been told to use previously. She ran out to her car to bring in a bottle of SkIntegrity. We ďhosed downĒ his backside, wiped off excess Butt Paste, and patted him dry.

    Remarkably, his wounds didnít look nearly as bad as weíd anticipated. She took photos.

    2. Butt Paste out. Calmoseptine in. I donít have Calmoseptine. She ran out to her car again. She didnít have any either.

    So I ordered 6 tubes from Amazon today. Theyíll be delivered on Thursday.

    3. No more Optifoam. She wanted to leave the wounds open with Butt Paste (all we had today) for a couple of days to see what happens.

    I had ordered 8 boxes of 10 6x6 pads. We also just received 5 boxes of 4x4 pads. Thatís our current inventory. I could start my own wound care business now.

    4. No more pillow cases under his manly bits. She wants to use just a folded underpad to catch the drainage. This will absorb and wick away the moisture, where the pillow cases just soak it up. I used pillow cases to reduce abrasion from the underpads. It never occurred to me that it would be a problem.

    Recently, I ordered 2 dozen pillow cases from Amazon. Just shaking my head ...

    5. Jim and I noted that the coccyx wound appears to be closing up. We attribute this to Jonís weight loss over the past couple of months with his reduced formula. That turns out now, apparently, to be a good thing.

    It was difficult for us to discern whether Jonís weight gain was entirely fluid or fluid and fat. Now, we notice that the fluid is less, and his urine output is increasing to 50 cc/hr (his normal). And his fat is less. He looks so much better, his body is now more defined. Heís not malnourished. He was overweight.

    FOLLOW UP

    Jonís nurse will share the photos with the agencyís wound care nurse, who was once Jonís primary nurse. Jonís nurse will visit on Friday to help us turn Jon again and examine his wounds. She hopes that the wound care nurse will join us.

    The agency has hired a new wound care nurse, who is a WOCN (Wound, Ostomy, and Continence Nurse). PERFECT! Jon has all three of those issues! Maybe she can help us find a way to stop the leaking catheter. Maybe she can give us ideas on how to make Jonís colostomy wafer more comfortable, so he doesnít scratch it. Maybe she can give us the best ideas on how to treat his current wounds and protect the site of the 5Ē tunnel from years ago.

    We are ready for this assistance! Yes, we are!

    Of course, sheís a busy nurse, so weíll have to wait our turn. But Jonís nurse can share the photos, and maybe she can advise Jonís nurse on the next steps to take until she can visit.

    PSEUDOMONAS

    Jonís nurse said that this is the most common bacteria associated with indwelling catheters, and it usually isnít treated. I knew that this was the case with several UTI bacteria, but I couldnít remember which ones they were.

    Jonís temp is normal, SATS are very good, heart rate still a little elevated, but generally, heís not demonstrating symptoms requiring treatment.

    DEPAKOTE LEVEL

    With a therapeutic range of 32-35 (considered below normal on the range), Jonís current level is 19. Not good.

    Still, our family doc emailed me that, because Jon is not seizing, we should keep the doses as they are. Jim and I laughed. We adjust his dosages continuously, based upon his clinical presentation. The purpose of taking levels is to make sure that we protect him from a seizure, if his level is low. Thatís what weíll be doing with his Depakote.

    He also ďdoc-splainedĒ to me what a ďtrough levelĒ is. Again, I just laughed. I think our doc is younger than Jon, which means that Iíve been getting trough levels done on him longer than our docís been on Earth.

    When we first met him in 2000, fresh out his residency, and with his very young face, I told Jim that I didnít know whether to shake his hand or dry him behind his ears.

    He concluded his email by complimenting me as Jonís mom and advocate. He is a very kind, caring, and dear man.

    Thatís all of the news fit to print. Weíll see how Jim feels tomorrow after turning Jon on his own. Iím worried, of course.

    Thank you all for your prayers, love, support, and friendship. You and your loved ones are always in our prayers.

    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 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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  11. #336
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    Very happy to read this, Rose. And glad for the triple-specialty nurse that might see Jon and for the visit on Friday.

    ANN
    There comes a time when silence is betrayal.- MLK

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  13. #337
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    Finally, some new things to try. Maybe some will help Rose. I hope so.
    Virginia

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  15. #338
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    Hi dear Rose,
    I'm so glad that Jon is doing better! What a mystery that man is. And I'm so glad that the wound care nurse is going to get involved. It sounds like your nursing supports are terrific even if they are very busy. Nick had pseudomonas before but around his G-tube stoma. He was put on clindamycin for it with no bad effects (even though it's a strong antibiotic). Nick is not frail, but he is complex - he tends to tolerate lots of meds without sensitivities unlike Jon. That's the luck of the draw, eh Rose? We are all so different. I'm glad too that your nurse has some ideas about protecting Jon's skin. It's interesting about the SkinIntegrity - we use SkinPrep - maybe it's a different name in Canada. And we use duoderm to protect areas that are really prone to breakdown. Anyway, our Daisy is in the OR today getting spayed, poor thing! Thinking about her, of course. Lots of love! 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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    Glad to hear you've gotten some good input and more nursing support for the wounds. I'm not surprised that the wounds aren't as bad as they could have been, you do such an amazing job keeping everything in check as best to your ability! So glad you got him turned that must have been weighing very heavy on you (not to mention all the other heavy things on your shoulder). Many prayers that things continue in the right direct (and adding to my prayers without so much stress).
    Mary Grace

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  18. #340
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    ((((((Hugs to All)))))) ~

    Thank you, ANN, Virginia, Donna & Mary Grace ~

    Donna ~ SkinPrep is used for areas with tape or adhesive. We use it around Jon's colostomy stoma, before we put the wafer/flange on. SkIntegrity is a spray wash for cleaning.

    SkIntergrity:

    https://www.walgreens.com/store/c/me...HKvD_BwE&o=acs

    We used Duoderm years ago, but it required taping. Optifoam has a zinc coated tape on it. Very easy to apply/remove and has better absorption than Duoderm.

    Optifoam:

    https://www.vitalitymedical.com/opti...SABEgIhqPD_BwE

    Hope Daisy is recovering well from her surgery. Awww...poor sweetie!


    Jon’s nurse visited today to check Jon’s wounds and help us turn Jon.

    1. Lots of drainage, especially without Optifoam to soak it up. Had to clean mattress pad, and I now have another massive laundry load to do.

    2. Wounds do look slightly better. This is with Butt Paste only on the wounds. Nurse rinsed with SkIntegrity but didn’t clean off all of the Butt Paste, because that disturbs the wound.

    3. She applied Calmoseptine. I ordered 6 tubes of it. Probably more than we’ll ever use, so I’ll donate them to her for use on other patients.

    4. When she consulted with the wound care nurse (not the WOCN; Jon’s original primary nurse), she said:

    a. Hydraguard is the best coverage for his wounds. So much for Calmoseptine. I ordered 2 tubes from WalMart, and they were due to be delivered today, but didn’t arrive in time for the nurse’s visit.

    b. No Optifoam or any wound coverage.

    c. Maybe Jon has bladder spasms. Maybe. But what can we do about that? He can’t tolerate the drugs given for that, like a muscle relaxant. He can’t have Botox. And how do we know he actually does have bladder spasms?

    We’d need a urologist, and they all told us that they couldn’t help him, when he was in ICU in 2011. “Just cath him and take him home.” He wasn’t a candidate for various tests, because he can’t tell us what he’s feeling. And, they probably figured that he wasn’t going to live very long anyway. Ha! Fooled them!

    Jon’s nurse has requested two visits/week for the next 2 weeks to clear up his wounds. She works Tuesdays and Fridays now. Next Tuesday, Jon has a visit from the Toenail Team. So, we’ll have to coordinate those two visits and hope it isn’t too much for Jon.

    Jon needs surgical removal of his toenail, but the podiatrist’s assistant knows that’s a problem for Jon. So, she has been whittling away at the nail every 9 weeks and removes the ingrown portion. She’s been visiting for years and is like family to us. And she’s really adept at what she does.

    Meanwhile, Jon’s SATS dropped to 79 this evening, after holding in the 90s for a couple of weeks. I took off his trache plug, he coughed, and his SATS rose to 93.

    I don’t know why this is happening. He isn’t filled with fluid, and his urine output is good. His bowels are moving. So much so that he scratched off his wafer/flange last night. Quite a huge mess everywhere. So, we’re back to restraining his wrists. So frustrating.

    We keep on keeping on …

    Thank you all for your love, support, prayers, and constant friendship. As always, you and your loved ones are in our prayers.

    We love you!

    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 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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