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Thread: What Is Next For Jonathan?

  1. #21
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    I've used the silver nitrate sticks on Tyler's gtube granulations multiple times when he was little. Never seemed to cause him any discomfort and easy to use. Worked just fine. Recently the granulation showed up again and the doctor prescribed Triamcinolone Acetonide cream. It's much slower in healing time, but is working. Sure hope you are able to replace the tranche with no more problems.

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  3. #22
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    Hi Rose, thank you for your emailed response - I'll answer here and get back into the habit of checking in with my dear friends at CN2. In our experience, silver nitrate is fine in small doses - liberal application is really painful! I hope your nurse can visit today and maybe she'll have some luck. You are so right, it's a terrible shame that there aren't home visits with RTs! More and more people today are running home hospitals - these home services should exist - it's a lot less expensive than hospital ER visits and much easier/healthier for patients and families. Good luck, my dear friend xox
    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. #23
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    ((((((Hugs to All)))))) ~

    Thank you Tamie and Donna for sharing your experience with silver nitrate. Does it require a prescription? After you use the silver nitrate sticks, do you cleanse the area with water? Does it shrink the granuloma immediately?

    It's too late to try it now, as Jon's nurse will be here tomorrow. I'm praying with all of my might that we will be successful, but should we not be, I'm going to call the RT department at our hospital with the hope that I can speak to an RT, who will give me insight as to why the trache is not coming out and advice on what we should do. I don't know why I didn't do this sooner. My mind is a muddled mess these days.

    Meanwhile, Jon and Jim napped for 3 1/2 hours this afternoon. I watched them in envy. I did "quiet" cleaning, like dusting and waxing furniture. When Jon woke up, I bathed him. Then I vacuumed. Then it was time for John's visit to turn Jon. Oh, how it lifts my spirits to see Jon smiling at his bro'. When the four of us are together, there is so much love and laughter in Jon's room. And lots of conversation, which Jon truly enjoys.

    While I was bathing Jon, I told him that the Toenail Team will also visit tomorrow. He beamed. PRETTY LADIES! Who flirt with me! Yay!

    Looking forward to reporting tomorrow evening that Jon has a new trache and catheter.

    Thank you all for your prayers and positive, healing energy!

    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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  7. #24
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    Praying praying praying for a new trache and catheter! It was such a long time ago we used silver nitrate, Rose, I can't remember if we needed a prescription, but you could call your pharmacist and ask. It's a bit like a wart remover if you know what I mean. It takes a few applications to see the difference, but it definitely reduced granulation tissue in about 2 days. The secret is not to get impatient and put too much on - this is a bad idea because that's when it's painful. (speaking from experience here! Poor Nick) But the light application works like a charm. xox
    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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  9. #25
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    Tyler's surgeon gave me the original sticks, after that, I needed a prescription. You just lightly touch the tip to the granulation areas. Works fairly quickly. Tyler didn't react at all during the procedure so I know he wasn't feeling any pain.

    Sure hope all goes well for you today..

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  11. #26
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    Thumbs up Success

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

    SUCCESS!!!

    Jonís trache came out easily and quickly. New trache went in easily and quickly.

    Doing the Dance of Joy!!!

    After a month of worrying and stressing about Jonís trache change, it is such a tremendous relief that it went so very well today. Jonís nurse, Jim and I held hands in a circle around Jon, when we were finished. Tears in our eyes, we said, ďThank You God.Ē

    Prior to the procedure, I lifted up the trache tubeís guard to show his nurse the granulation. She exclaimed, ďThat looks great, Rose! The salt water worked! Itís much smaller and not inflamed like before. Wow!Ē

    And before we removed his trache, I slathered it with water soluble lubricant, using a long sterile Q tip. I was able to get under the granuloma to allow me to lube the tube as well.

    Jim suctioned Jon, which stimulated coughing, which loosens the trache. We had Jon semi-reclined, rather than upright, because he has a head lag, which could interfere with removal. We usually change the trache with him more upright, but this time, we had to try something different, and it worked.

    Jonís foley catheter change went very well also, with immediate return.

    TOENAIL TEAM

    The Toenail Ladies also visited today, and she was able to cut out all of the ingrown toenail, which Iím sure is a relief for Jon. He has granuloma on this wound too, so Iím going to try soaking it in warm salt water know that we now that it works. It has an ongoing infection, which weíve been unable to control. We arenít too keen on giving him oral antibiotics, unless it gets out of control.

    I treat his toe everyday, soaking it in either MicroKlenz or Witch Hazel, debriding the wound, and periodically applying triple antibiotic ointment. It looks better now than it has for years. As long as the nail continues growing into his toe, he will have a problem.

    The only solution is surgical removal of this toenail. That means going to the ER, and finding a podiatrist, who will do it. Jonís podiatrist is from South County, but he provides home care for both South and North counties. If he could get permission to use our hospital, heíd do it, but I donít know the likelihood of that.

    I feel like Iíve been dragged on dirt for miles. Iíve been on my feet for 8 hours today, taking my 2 mile walk, cleaning, getting all of the supplies for all three procedures, keeping Jon awake, because he woke up too early today and wanted to nap, before his nurse and toenail ladies arrived. Of course, while they are here, Iím on my feet talking to them, getting things for them, assisting them with the procedure.

    I also baked cookies for them today. Well, just organic refrigerated dough cookies, but it was something else to keep me on my feet.

    So, tomorrow, I do absolutely nothing, except what has to be done. The house is clean. The bills are paid. Iím taking the day off!

    Thank you all so much for your positive thoughts and energy and prayers and love! I gathered all of you around us today. You were right there, as we changed his trache. Thank you so much.

    Love & Light,



    Rose

    Tomorrow, you can find me here:



    Plenty of chairs, please join me. Your smoothies are waiting!

    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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  13. #27
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    Congratulations on a job well done, Rose! Many jobs well done.

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

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  15. #28
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    Smile

    ((((((ANN)))))) ~

    Thank you! I am finally relaxing a little bit tonight. The first time I sat down after we were finished for the day, I ached all over. Still do a little, but it's lessening. I'm sure that it's because I've tensed up all of my muscles from stress. It's been a stress-packed month.

    Tonight, both of my beloved men are healthy, happy, and here. I have no doubt that Michael is watching over us. We are so blessed, and I am extremely grateful.

    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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  17. #29
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    Hallelujah Rose!!!!! I'm so relieved to hear that the trache and catheter got changed without trauma. What a blessing. And that Jim is doing so well this week. Yay!!! You taking a day off today is the icing on the cake, dear Rose. Let's imagine that we are on the beach together having cocktails. I'm so happy that there's no trips to the ER this week (touch wood, of course).

    Today I read this and of course thought of you and your guys https://www.huffingtonpost.com/entry...b0de896d3f2c3b it's all about IHSS. Sending you much love and continued prayers. xoxo From rainy, foggy and chilly Quebec.
    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. #30

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    Dear Rose,

    So happy to hear that the trache change happened without any problems. I hope you were able to enjoy your day off.

    Marcie

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