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    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, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

    #2
    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

    Comment


      #3
      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 (27): 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."

      Comment


        #4
        Oh I'm so sorry... I hope this all gets resolved and you all get some rest.
        Mary Grace

        Comment


          #5
          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

          Comment


            #6
            Ouch. That's gotta hurt! I had a few bladder issues a few years ago and boy was it uncomfortable. I will be praying.
            Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
            My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

            Comment


              #7
              ((((((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, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

              Comment


                #8
                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!
                Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
                My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

                Comment


                  #9
                  Cinnamon may kill germs and get fever down fresh lemon cant hurt or apple cider vinegar

                  Comment


                    #10
                    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

                    Comment


                      #11
                      (((((hugs))))) Glad to read that he is peeing now....praying that continues and that his fever comes down, bleeding stops, and that you all can get a good night's sleep tonight!! Hope the new g-tube comes soon! Good to hear that you have someone helping advocate for that....though it shouldn't be so hard to get needed supplies!

                      Lisa O.
                      sigpicLisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

                      Comment


                        #12
                        Sounds like a few baby steps in the right direction. I hope the tests come back soon and that replacement tube is already in the mail! Continued prayers for no fever and no seizures = relaxed lips into smile!!!
                        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

                        Comment


                          #13
                          ((((((HUGS))))))

                          Thank you all for your support.

                          Jon slept for 13 hours!

                          But his peeing stopped. Jim gave Jon a 20 cc irrigation (small amount) about 3 a.m. hoping to stimulate urine or move a blood clot or clog in the tube. Nada.

                          About 6 a.m., Jon produced 100 cc's of urine. Not much, but a start. Two hours later, another 100 cc's. Tick Tock ... four hours with no pee. Every 15 minutes, we check for pee. By noon, I was beginning to be quite worried, and there it was: 200 cc's more! I ran to Jim and burst into tears.

                          Now it seems that instead of continuous urine drainage, he is producing 100 cc's every 2 hours. That is equivalent to 50 cc/hr, which is fine for output.

                          Belly and bladder are soft. He's back to his regular rate on his food, tolerating it well. He's producing bowel in his colostomy in good quantity. His SATS are stunning at 97. Heart rate is down from 125 to 115. Temp is down to 100.7.

                          We gave him a thorough bath and washed his hair. His bed looks like a murder crime scene, but he couldn't tolerate being on his side long enough to change his sheet. I just figure he's not done bleeding yet, so why ruin another sheet?

                          His urine is pink tinged, but he hasn't produced any frank blood during the night or today. This is an excellent sign. We pray it continues.

                          He was alert and talkative for awhile, now he seems wearier. Losing all of that blood and battling a 3 day fever has to be taking its toll on him. But we did get LOTS of SMILES and "I love you" from him!

                          Jon is such a brave trooper. He is our hero.

                          No word from the doc on the UA results, so if he has an infection, it will go untreated until Monday. Well, that doesn't please me at all. I know we're waiting on a culture, but preliminary results should tell us something. Or maybe in his case, they don't. A long-term indwelling catheter will always return results showing bacteria. It's par for the course. It just depends upon how virulent they are, or if there are other organisms present, which are not commonly occurring.

                          Jon's doc emailed me yesterday telling me to join the online Patient Portal and that I should consult Jon's urologist.

                          I responded with: 1) I have to buy a new computer to access the Portal, because my OS is too old for the Portal's app; 2) Jon doesn't have a urologist. The two who saw Jon in the hospital last year said, "Catheterize him and take him home." They both made it explicitly clear that Jon is an end-of-life patient from their perspective, and they wrote Jon off.

                          Now, I have told Jon's doc both of these things more than once. I've also told him that Jon doesn't have a neuro, because none of the ones associated with our hospital will take him, because he's a Medicaid patient. And how can we consult a neuro, whose office is in central county, and who isn't associated with our hospital? We can't, and we won't.

                          Jon's doc requested the services of the hemotologist/oncologist for Jon's massive blood draw. It's been 5 weeks. Not a word. What was that all about?! How has that helped Jon? Or me and Jim in determining Jon's status?

                          No word from the GI doc on the G Tube either. If this ends up being an ER trip, I'm going to be quite perturbed.

                          Another heat wave is predicted for next week ~ up to 105 here. I fear a power outage. If Jon's temp doesn't start coming down, and we're still dealing with it, he'll be a mess without air conditioning or fans. So today I ordered 3 battery operated 10" fans for his room, just in case.

                          Jon better not have a temp next week! This has to be resolved!

                          Jon's nurse is going on vacation for 2 weeks, so we can't have any more crises while she's gone. We can always turn to our other, trusted favorite nurse, of course, and our Nurse Practitioner.

                          Thank you all so much for your prayers. Please continue to pray for pee, as well as a cessation of bleeding. We can feel your prayers, and we are so deeply grateful to you.

                          Love & Light,

                          Rose
                          Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                          Comment


                            #14
                            Sunday Update: Pray for Pee!

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

                            Jon is on his 5th day with fever. He had a brief respite of a normal temp overnight two nights ago. But now it's hovering between 100.6 and 101.1.

                            His peeing isn't going well. Ever since his nurse clamped the drainage tube to collect urine in it, and it was clamped for 4 hours, his peeing has been erratic.

                            Yesterday he managed to produce 1150 cc of urine, where his normal output is 2300 cc. Quite a reduction. Plus, he's holding it for hours, before the urge strikes him. He can feel it (it wakes him up) and that isn't the way it should be at all. It should be continuous drainage from the bladder, which he cannot sense. But he grimaces, when he's about to let lose, as if he were peeing without a catheter in him.

                            I spent quite a bit of time talking to his nurse on the phone, and she kept telling me that it was okay that this was happening. She couldn't think of anything to do to mitigate it. She doesn't want me to advance the catheter, in case it disturbs and retraumatizes him, causing another bleed. Good news is that the blood stopped two days ago. His urine, when he has some, it sparkling clear. I sure don't see or smell evidence of an infection.

                            It has been quite an ordeal for Jon, and he's exhausted. He just wants to sleep. He's probably overdosing on his meds too, because he's not excreting all of them.

                            Jon's nurse is packing today to leave on her vacation tomorrow. So, I will be calling the Nurse Practitioner, who serves in lieu of Jon's doctor, to visit and offer her opinion and advice. We have to do something. He can't go on this way. And I'm trying to keep him out of the hospital.

                            The next option will be to ask for a visit from our other favorite nurse, who can change Jon's trache. That does need to be done, plus she is another opinion and has additional experience.

                            Jon's SATS are still great at 97, and his heart rate is down to 105 now, which is better. Still too high, but better.

                            I feel strongly that if we could just get Jon's urine to start moving properly again that he will rebound and feel significantly better.

                            So, please pray for pee!

                            Thank you all so much for your prayers, friendship and support.

                            Love & Light,

                            Rose
                            Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                            Comment


                              #15
                              (((((Rose)))))

                              Praying for Jon to pee!! Hoping his fever breaks too, those are not at all fun. Praying you can avoid the hospital....

                              Lisa O.
                              sigpicLisa 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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