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Thread: Prayer Requests for Jon

  1. #1
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Default Prayer Requests for Jon

    ((((((HUGS TO ALL))))))

    Jon fell asleep at 1:45 this morning, but he was slumped over in bed (probably trying to get his left hand to his mouth, which he does for comfort, but unable to do so, as it is tied down to prevent him from ripping out his PICC line). Jim said that Jon's SATS were 78, so Jim straightened up Jon, then suctioned him at 2:30 a.m. Jon has been awake since then.

    Sleep deprivation is an engraved invitation to a gigantic tonic clonic seizure.

    > > > > > Please pray for Jon to sleep well and for several hours and that he will not seize.

    We bathed Jon last night, and when we rolled him on his left side, he was in excruciating pain. He was beet red. This is common after hospital release, because their beds are insufficient, as I've stated previously. Even when Jon's home bed has been on the fritz, and he's been relegated to the full air mattress, rather than alternating pressure/low air loss, he quickly develops unremitting pain in his hips.

    When we pulled Jon up in the bed this morning, Jon grabbed his left thigh, rubbing it, saying, "Owie. Owie."

    We gave him a Tylenol.

    His heart rate has been in the 80's ~ a sign of pain, as well as infection. And probably sleep deprivation.

    > > > > > Please pray that Jon's hip pain will subside soon.

    Probably because he is tired, and maybe because he still has pneumonia, Jon's SATS have been dropping regularly throughout the day today. He held in the 90's yesterday, but today, he's dipping into the 80's, requiring suctioning.

    > > > > > Please pray that Jon's SATS will go up and stay up, that he will cough on his own, and that his pneumonia will resolve soon.

    Last night, Jon began bleeding from his indwelling catheter. A delayed reaction to the catheter change, I suspect. We irrigated his catheter last night, and the blood did stop for a few hours, but now it's returned. He needs another irrigation.

    > > > > > Please pray that the bleeding will stop.

    Because Jon is congested, we decided to lower his feeding rate to 75 ml/hour from 90 ml/hour. That probably doesn't sound like much, but it all adds up in 24 hours. He will be receiving less than his allotted 6 cans/day of formula, but we have to determine whether we've increased him too rapidly and if that is the source of his congestion.

    We're still doing well with the IV Zosyn. No problems there, which is a relief and may it continue to be so.

    The good news is that he has lost most of the fluid in his torso, and he looks like himself again. Even his legs are looking less swollen. This is a blessing, of course, and we give thanks for it.

    Now that you've read our prayer requests, we thank you for praying with us. Just by reading, you've been praying. And your positive energy is now flowing toward Jon. God Bless You for this gift.

    Our prayers are going up for you too always.


    Love & Light,

    Rose
    Last edited by Earth Mother 2 Angels; 07-01-2012 at 07:24 PM.
    Mom to Jon, 47, (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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    Distinguished Community Member andromeda31's Avatar
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    Hi Rose,

    Hope his pain gets better and you both have a good night....prayers going up!

    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!!

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    Many many prayers, and positive thoughts.
    Mary Grace

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    Dear Rose praying now for stability in all areas and sleep.

    God bless.

    Paul, Alison and Grant the champ.
    Grant's story in pictures and music. A must see :)
    http://www.youtube.com/watch?v=fiZGlwj6VCQ
    Seeya there :)

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    Prayers being sent. Thank you for the update. Here's hoping for an excellent nights sleep for all of you!
    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."

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    Oh gosh, Rose, prayers going up. ALL prayers requested. I am so sorry that it's not easier for your dear Jon and you and Jim as well. My thoughts are with you all, my sweet friend. 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


  7. #7
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Thumbs up Answered Prayers

    ((((((Thank You!))))))

    Your prayers are working! Thank You!

    Jon slept for 6 hours from 3:00 to 9:00 a.m.

    After irrigating his catheter, the bleeding stopped.

    SATS have stayed in the 84-97 range, requiring some suctioning occasionally.

    So far, he has been okay with being pulled up in bed. We are giving him a rest from turning, until this evening. He hasn't expressed pain today.

    Temp is normal. Heart rate slowing down to the upper 70's from the 80's.

    He is still quite tired, and still needs more sleep after 48 hours without it, but he is holding his own.

    Yesterday and today, Jim and I changed the Zosyn IV together. It's good to have two eyes and minds on the task. We can, so we do.

    We are thinking that we will keep Jon's PICC line, until we get the results of his blood work, which his nurse will take on Thursday. Just in case something is amiss, or if his WBC is elevated, and he needs more IV antibiotic, or ... I would rather keep it for another day or two, than have it removed and re-inserted.

    After we receive the blood work results, I'm hoping that we can ask the Infectious Disease doc for his opinion and protocol as we go forward. Otherwise, I'm hoping that Jon's PCP (Dr. A) will guide us, or consult the ID.

    The longer we keep the PICC line, the greater the risk of infection, and the greater the risk that Jon will get fed up with having his hand tied down or will try to pull out the PICC line, when his left arm is free. This is stressful for all of us, so we hope the blood results will be good for many reasons, and the PICC line can be removed.

    Thank you so much for your prayers, love and support. You give us strength.

    Love & Light,

    Rose
    Mom to Jon, 47, (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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    Distinguished Community Member andromeda31's Avatar
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    Hi!

    Glad the IV is going well and that he hasn't had pain! Praying the blood work comes back good. Hope you're getting rest too...time for me to get to bed...got sucked into a tv show when I went in Caitlin's room to turn her tv off, lol.

    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!!

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    Glad he is doing better. I'v had hip pain as part of my CP. It really sucks.

  10. #10
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    Smile More Improvement

    ((((((HUGS))))))

    The value of sleep can never be overestimated in the healing process.

    With another 6 1/2 hours under his belt this morning, Jon woke up bright as the sunshine streaming through his bedroom window.

    He has maintained SATS in the upper 90's all day, without any suctioning. No bleeding. Good temp and color.

    He's worn out now and taking a nap, which is a blessed sight to behold. He needs sleep.

    The power of prayer is undeniable, and we thank you all for your incredible prayers for Jon and us.

    Funnylegs4 ~ I'm so sorry for the pain you experience, and I wish that you didn't have to cope with it. I'm sending you healing energy and prayers.

    Thank you all!

    Love & Light,

    Rose
    Mom to Jon, 47, (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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