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Thread: Prayer Request for Jon: Bleeding

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

    ((((((HUGS)))))) To All ~

    Jon had his catheter changed today, and he began bleeding profusely. With his low hemoglobin, he can't afford to lose so much blood.

    We irrigated his catheter with 200 cc of saline, but all he returned was a huge clot (looked like a piece of liver) and no water or urine. His bladder is hard, and now he's filled with gas as well. He was expressing extreme pain and discomfort.

    I called his nurse, who thought it might be a bladder spasm, and she advised putting a warm wet wash cloth on his belly over his bladder. We did that for an hour, with no result. Nothing was coming out of his catheter.

    She then suggested that we move him, turn him, and give him extra water via Gtube. We did that, waited, and finally a trickle of blood (thinned with water) began to flow into his foley bag. Not much, but at least something was moving.

    An hour later, we tried irrigating with just 10 cc of water. No return. We wait.

    We are keeping him off of his food, because his belly is distended, and we don't want him to vomit. We're just keeping him hydrated every hour with water.

    It's 8:30 p.m. now, and we've been at this since 5:00 p.m. (when we irrigated him). Cath was inserted at noon. We are trying desperately to avoid going to the ER. We know that they will just irrigate him as we have, but since the irrigation caused him so much pain/discomfort, we are leery of putting more water into his bladder and not having it come out. The bladder can actually hold quite a bit of urine, and 200 cc's isn't that much in reality.

    His nurse is reluctant to advise us to keep irrigating, as that's typically a doctor's call. But we do know that's what will happen in ER, because that's what happened the last time he bled like this. And the doc instructed us on how to irrigate, which we did for at least 4 days after that visit.

    We are waiting and watching now. Jim has been up since 12:30 this morning, and he never got to bed today. The poor man is exhausted. Jon is exhausted. I'm a nervous wreck with worry.

    Thankfully, Jon has calmed down and isn't expressing outright pain any longer. But he has to get that fluid out of his bladder or he'll be in big trouble.

    Most everyone here is likely snuggled up in bed snoozing. But should anyone visit here this evening, we would greatly appreciate your prayers for Jon to start producing water and urine via his catheter and that the bleeding will cease. I'm calling on all of our Prayer Warriors tonight! Already sent an email out to friends. The more positive energy and powerful prayer flowing in Jon's direction, the greater the potential for the right resolution to his crisis. I truly believe this.

    Thank you all for your prayers. I am truly 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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    Ohhhhh Rose.... positive energy, prayers, healing thoughts, gentle hugs. All coming to you over the day today. Prayers going up now. Poor sweet Jon and poor you and Jim. xoxLove and I wish I was closer. 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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    Sorry to hear Jon is going through so much pain. Praying for relief and for him to void his bladder. Took Tyler to the ER once when he withheld his urine for 18 hours and they drained 900 cc's off of him. He was 14 at the time and in a lot of pain with stomach distended and passing blood. I know what you are going through and it is so hard to watch when you feel so helpless. Hugs to all of you. Please update when you can.
    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 I'm so sorry... I hope this all gets resolved and you all get some rest.
    Mary Grace

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    Hi Rose, still praying and hoping Jon is feeling better. Thinking of you. xD
    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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    Ouch. That's gotta hurt! I had a few bladder issues a few years ago and boy was it uncomfortable. I will be praying.

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((HUGS))))))

    Thank you so much for your prayers.

    Jon developed a persistent fever, which has not been controllable with Tylenol and tepid baths. We were hovering, bathing, doing everything to get that temp down, giving fluids, and waiting for pee. We irrigated his catheter 4 times.

    Finally, at 3 a.m. Jon started to pee well. The blood began to subside, and while he slept for 8 hours, he peed a good volume with just a trace of blood.

    Unfortunately, while I was attempting to gently clean the encrusted blood around his genitals this morning, he started bleeding again. This is finally slowing down this evening.

    His temp is still 101 to 102.

    His nurse visited today to take a UA per the doctor's order. Unfortunately, Jon wasn't peeing, so she clamped the drainage tube. She left to see her other patients, intending to return when Jon produced pee. Finally 3 hours later, he produced some pee, and she returned to collect it. When she unclamped the drainage tube, he peed a huge amount immediately.

    As we were discussing Jon's temp, his nurse remarked that Jon is colonized for MRSA. She was attributing his fever to that, although I can't understand why it would flare up over a cath change and blood loss. That hasn't happened before.

    In fact, when Jon has been deathly ill, his temperature doesn't typically rise above 100. I strongly suspect that the Synthroid has messed him up, and now temps seem to be common. I am quite unhappy about this, if it is the case, since I refused Synthroid for 7 years, and caved in to the doctor in June. I should have continued trusting my gut.

    Jon has had some agitated moments, with pursed lips. I am able to calm him and get him to unpurse his lips, but I wonder if this is seizure activity associated with his fever.

    So, now we await the UA results. Thus far, we have avoided the ER. YAY!

    Jon has the most wonderful nurse, who has become a dear, close friend to us. She and I talked on the phone numerous times yesterday and today, in between her visits. She continued to provide us with suggestions and guidance. She adores Jon and is such a fantastic support to us. We just love her!

    Today, she stopped by the GI doc's office, with photos of Jon's Gtube (provided by me) and she gave them the entire low down. She told them that we are trying to prevent a crisis and that his tube needs to be changed very soon. She asked them to order the tube so that it is in hand whenever he gets it changed, either by home visit or ER, because our hospital doesn't carry this kind of tube (it's a mushroom, not a balloon Gtube ... not a button). I think we might see some action now. She had the two gals at the desk and the doc's nurse on their toes today!

    To bolster Jon a bit, I have told him several times that people all over the world are praying for him. He smiles when he hears this, and I know it comforts him. God Bless You All for your prayers.

    I look forward to updating you that Jon's fever has broken and that his bleeding has subsided.

    Meanwhile, back to bathing and hovering ...

    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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    Glad he is peeing a little! The lip thing might be from discomfort. I tend to tense my lips when I am not comfortable. More prayers on the way!

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    Cinnamon may kill germs and get fever down fresh lemon cant hurt or apple cider vinegar
    "'I have done my best.' That is about all the philosophy of living one needs." Lin Yutang

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    Continueing those prayers. I know how powerful they can be. I'm so glad it comforts him to know how many people care and are praying. I hope there's some good news today!
    Mary Grace

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