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Thread: What Is Next For Jonathan?

  1. #241

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    How’s Jon? Did he finally get some sleep?

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  3. #242
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Thumbs up Improving!

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

    Marcie ~

    Thank you so much for asking.

    Yes, Jon slept well last night. He also tolerated 50 cc/hr of formula.

    His urine output slowed down from 50 cc/hr to 35 cc/hr (the acceptable level per ICU). But his bowels finally began to move and are continuing to move, so YAY! It's one or the other right now, and his bowels really needed to move.

    We increased his formula to 70 cc/hr this afternoon, and he's tolerated it so far. We're going to hold him at that, and probably not feed him for an hour tonight at bedtime. This is a really slow process, and while I worry about his nutritional status, his respiratory status is the Number One concern.

    In that regard, his SATS are consistently 94-96 with a heart rate of 97. I'd like that heart rate to come down, but with all of that pressure from the excess fluid, it probably won't.

    After the breaking of the pump and mattress, I decided that I'd better order another pulse ox for Jon. The one we use is difficult to find on line, but it is the best we've found in all these years. It's very expensive, but it is accurate and lasts for many years, with a 5 year warranty. Basically, we're running a medical facility here for Jon (and in some ways for Jim, who also uses the pulse ox). So, we need reliable equipment to be able to provide proper care. We rely on that pulse ox heavily.

    So, for this tax year, we'll have a very large deduction from our "small business" with the mattress/pump and pulse ox. It doesn't balance out exactly, but it does help.

    I texted John today that Jon is better, and we have tentatively scheduled The Big Move for Thursday at 3:30 in the afternoon. We all have to gear up for this, because we're all in pain.

    Friday, Jon's nurse will visit to change his catheter and trache. It's going to be a very busy week.

    We're looking forward to Saturday, when our Buckeyes play Northwestern for the B1G championship. We plan to spend the entire weekend just vegging and relaxing. I'm sure that we will all need it.

    Many healing prayers and lots of love and hugs to you and your family, Marcie ~

    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. #243

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    So happy to hear Jon is doing much better! Your weekend plans sound good.

    My Jonathan turns 19 on Saturday and we will be celebrating his birthday. I can’t believe how fast the time has gone. We will be going out to dinner with the family and my father-in-law and his lady friend. It will be a nice night.

    Sending thoughts and prayers up for an easy move for Jon and easy trache and catheter change.

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  7. #244
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    ((((((Hugs to All)))))) ~

    As you can see by Jon's photo, the lift and turning went very well today! ()

    We were all amazed and thrilled that Jon did so well. Perhaps the Tylenol kicked in to abate the pain. He doesn't take it very often, so it has more efficacy, when we give it to him.

    After 14 days, without turning and wound care, his backside looked raw and sore, of course. The amount of drainage on his sheet was incredible. A ton of Butt Paste and Optifoam pads galore, and I think we should be able to conquer it. Of greatest concern was the small closed wound, where he had a 5" tunnel going up his left buttock in 2009. That is a vulnerable site, and it was bleeding.

    Once Jon was in his recliner in the living room, he was quite pleased. He looked around the living room, noticing all of the changes. He hasn't been out of his room, since mid-2015, as that is when Jim became ill with his RA flare for 6 months. Then by 2016, cancer started to materialize.

    So, I gave Jon a tour: "This is Dad's bed, where he rests and sleeps. He's always close by for you. This is Dad's table (coffee table), and these are Dad's meds, and Dad's magazines, and Dad's tray for his water and kleenex. And Dad's little trash basket. So, now you're in Dad's Room!"

    I turned on a movie and handed him a magazine, and Jon smiled, content and with no evidence of discomfort or pain. Jon and I hung out in Dad's Room, while Jim and John changed out the mattress. I was overcome with joy and gratitude.

    The new mattress is PERFECT! It has side bumpers, which will prevent Jon from rolling. We can keep him centered in the bed now, without pillows stuffed on the left side. Now, he can see us on the chairbed, through the rails, without pillows obstructing his view. The alternating pressure will help his wounds and pain, as I suspect his old mattress had been failing for awhile.

    Jon and Jim commented that the bumpers are also helpful with turning, as it prevents Jon from falling forward. Another benefit!

    While Jim and I took a break in Jon's room to assess the final result, John scooted out to the living room to visit with Jon. He called into us, "Jon has the biggest grin on his face!"

    "We need a photo!" I said, as I ran out to them, carrying John's phone.

    After we returned Jon to his fresh, clean, NEW bed, John said that he wants to do this for Jon more often. If he can slot away a couple of hours, he will visit, get Jon in his recliner and watch a movie or a game with him for a couple of hours. Or, he can put him in his chair, leave for a few hours, return and put him back in bed. He's a very busy man, but John saw Jon's brightness in being out of his "four walls" (thank you, Donna) for even just a brief amount of time.

    John took the old mattress with him to put in the dumpster, so that we wouldn't have to deal with it. As he was leaving, I asked him to check YouTube for The Hollies, singing, "He Ain't Heavy." This song exemplifies to us who John is ~ he's Jon's brother.

    https://www.youtube.com/watch?v=Jl5vi9ir49g

    John exclaimed, "I know that song! It starts with a harmonica and then 'The road is long.'" It was raining as John stood on our walkway. "That makes me feel so good inside, Rose. Jon is my brother."

    "Just know that you are loved and treasured, John, and this is how we see you. Now get out of the rain!"

    Today, our prayers were answered, and God has truly blessed us with the love and caring of the wonderful people in our lives. We thank you all so very much.

    Here's another photo of Jon by John ~


    Our hearts are "filled with the gladness of love for one another."

    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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  9. #245
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    Cool

    ((((((Marcie)))))) ~


    HAPPY BIRTHDAY TO JONATHAN!


    Wishing you health, joy and all that your heart desires!

    Yes, Marcie, the years do fly by.

    I hope you have a lovely celebration of Jonathan's 19th birthday on Saturday. I'll be thinking of you.

    Thank you always for your prayers, and please know that you and your family are in ours.

    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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  11. #246
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    Rose, I can see the smile on Jon's face. So glad this went well.
    Virginia

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  13. #247
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    Such excellent news, Rose! I’m very happy right with you.

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

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  15. #248

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    Jon looks happy and healthy sitting in his recliner! I’m thrilled to hear the move went off without a hitch!

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  17. #249
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    Rose what a wonderful update! I had to wait a bit for the tears to clear from my eyes before I wrote back. John sounds like a lovely blessing. I'm so glad he is in your life and cares so much for all of you. There really are some wonderful caring people out there. I'm so glad John will be working at getting Jon up and in his chair, I can envision the big smile on everyone's faces. I suppose this is the silver lining of the mattress issue maybe... If this didn't happen John may not have witnessed the joy he could bring to Jon. thank you for the smile this brought to me today (and the happy tears).
    Mary Grace

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  19. #250
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    Hi Rose,
    Yay! Oh wow! That's great that Jon got to see the living room! A change of scenery is great for everybody physically and psychologically! I really hope he gets to see the living room more often when his bro John can be there to help. This is probably a bizarre question but can Jon read the text in the magazine at all? Or not? I'm just curious since I know many disabled people who you wouldn't expect to be reading who can at least read a little. Fantastic picture of Jon!!!!

    Didn't get a chance to reply to Jim's thread but I pray Jim's tumor is shrinking. Waiting until after a holiday for results would not help my anxiety in the slightest either.
    Last edited by funnylegs4; 11-30-2018 at 11:24 AM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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