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Thread: What Is Next For Jonathan?

  1. #101
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    Jon is still bleeding from his urethra. We are still restraining both of his hands. Weíve never had this problem with a catheter before. And I mean that heís bleeding a fair amount, and heís leaking a fair amount of urine. His pillow case and under pad beneath him are soaked and red.

    His temp went up to 101.4 a few days ago, but itís normal now. He is just overflowing with fluid in his body.

    Podiatry Team visited on Tuesday, and she was very pleased with the progress Iíve made using gauze soaked in salt water wrapped around his toes to reduce granuloma. She was finally able to trim one of his nails that would have rivaled Howard Hughes. She was able to remove a good portion of the ingrown nail on his big toe. Now, we have to work on preventing infection.

    John cancelled his visit to turn Jon today, because he isnít feeling well and is aching all over. We appreciate him not wanting to expose us to anything. His mom is in the hospital, getting antibiotics for an infection after having a shunt placed to control her spinal fluid flow. So, heís been to visit her and could have picked up something.

    Jim and I will have to turn Jon. His under pad is shredded, and he needs wound care.

    Jonís GI called and will be here at 3:00 on Monday afternoon to replace Jonís G Tube. I was surprised to hear from him, as I hadnít sent an email to him yet. I guess he read my mind. That tube is so done. It looks awful. Really looking forward to that problem disappearing.

    Once thatís done, weíll have a 2 week break before Jimís next infusion and Jonís next cath change. The Bahamas are calling us ~



    Wish we could answer!

    Thank you all for your prayers, support, love and friendship.

    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 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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  3. #102
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    There is hemorrhagic cystitis, Rose. That would give him blood and a fever but it sounds like the actual urine is clear?

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

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  5. #103
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    ((((((Ann)))))) ~

    Yes, now his urine is clear, but he's bleeding from his urethra. It's mixed with the leaking urine. With his hands restrained, the bleeding has slowed down finally. We just hate to restrain him, but we have to do it.

    The cath is clearly uncomfortable for him. When he can reach his penis, he doesn't try to pull it out, although I'm sure he'd like to do that.

    The fever is associated with the fluid retention. We've been there many times. Also, it's very hot here. Cooling temps have helped. His output is typical at 50cc/hour, but that is not enough to get rid of the fluid.

    The initial bleeding was caused by his nurse, who inexplicably reinserted his cath without deflating the balloon. When she did this, I exclaimed, "Shouldn't we deflate the balloon? It's a 30 cc balloon, filled with 20 cc. She said it would be okay. It wasn't.

    Then a few days later, the cath slid out, as it often does, and after I reinserted it, with a deflated balloon, the bleeding from the urethra started.

    In the 7 years that Jon has had an indwelling cath, we have never not had leaking. Never. We gradually moved from a 16 Fr to a 22 Fr, which is what we use now. It hasn't helped.

    I hope that Covidien will soon have his 22 Fr/10 cc balloon caths available again. This one is like a fire hose in comparison.

    Thank you so much for your observation. If you have any other ideas, please let me know. We're desperate.

    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 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. #104
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    I do not understand the nurse not deflating the balloon! There is no rationale for that! Can you imagine someone doing that to us? Temporary insanity, we will just have to say.

    I understand she is a good nurse, maybe even great. Those home visiting nurses (we used to call them Visiting Nurses) have really long days, stupid meetings and too much paper work.

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

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  9. #105
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    ((((((ANN))))))~

    Jon's nurse is a great nurse and a wonderful person, who is now a member of our family after caring for Jon 9 years. We love her. She is 65 and wants to semi-retire, retaining only 3 patients, Jon and two other young men, who have been in her care for many years and live with their Moms.

    She's part time now, 3 days a week, but they work her like a slave, as they do all the nurses. The stupid meetings seem endless. The paperwork is just beyond ridiculous and cruel. She told her boss, "We're nurses, human beings. We like to eat and sleep and see our families."

    But the agency is under new management and the whip is being cracked constantly. Lots of nurses have left. They are blaming it on the ACA.

    This agency has been serving Jon (and Michael) for over 20 years. It is associated with our hospital, which is a Catholic hospital. It has always been the best nursing service in the county. We've had a few other agencies through the years, when we had Medi-Cal issues. They were horrible.

    When she visited to change Jon's catheter, Jon was her last patient, because we were waiting for delivery of the catheter from Amazon. She had an infusion patient, and two patients with blood draws (which means she has to go to the lab to drop off the vials). She was hot and tired and flustered, because her computer was not working properly, an ongoing problem for all the nurses.

    She just wasn't thinking clearly.

    That will never happen again, I guarantee, because I stand right next to her and assist her. I will insist that we deflate the balloon.

    Jon's temp is 100.1 today. It's in the 80s and humid, and we aren't running the a/c, because we all get stuffy sinuses. His output is still 50 cc/hr. I'm wondering if he's getting dehydrated, despite all of the fluid on board, because he's sweating a lot.

    He's just enormous, and that has to be painful for him. Yet, he smiles, laughs, and hugs us. When I was sitting with him watching Guardians of the Galaxy 2 (for the thousandth time), he called to me, "Mommy?" "Yes Jon." "I love you."

    My beautiful, brave, strong boy. How I adore him.

    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 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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  11. #106
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    Unhappy Seizure

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

    At 10:00 last night, I was upstairs, and a thought crossed my mind. I had an image of me calling Jim, because Jon was seizing.

    So, I went downstairs, and when I reached the bottom, I heard Jim saying, ďItís okay Jon. Iím here. Itís okay.Ē I rushed into Jonís room, and Jon was seizing. Facial grimace, clenched fists.

    Jim said that heíd come in to check on Jon, as Jon was winding down to go to sleep. Within a couple of minutes, Jon began to seize. He didnít have a chance to call me, because he didnít want to leave Jon.

    The seizure lasted 11 minutes. At the 10 minute mark, I got the Ativan ready. When the seizure ended, we decided not to give him Ativan. We give it to prevent seizures from going into tonic clonic mode.

    Jon was post ictal for 45 minutes, then he fell asleep.

    We canít remember the last time Jon had a seizure. I will have to search his charts from last year and the year before.

    After every breakthrough seizure, we increase his meds slightly, which I did for his last doses this morning.

    I canít fathom what caused this seizure, unless itís the heat and his fluid retention. Of course, Jim and I are upset and very concerned. Nothing we can do except keep a close eye on him with Ativan at the ready.

    That thought ~ premonition or just sensing the seizure? I donít know, but it is quite weird. I also had a premonition about an earthquake a few months ago, which happened right after I had the thought. I need to stop thinking!

    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 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. #107
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    Rose, I'm so sorry for these complications. Praying that this was a one time seizure and no more follow!
    Mary Grace

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  15. #108
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All)))))) ~

    At 10:00 last night, I was upstairs, and a thought crossed my mind. I had an image of me calling Jim, because Jon was seizing.

    So, I went downstairs, and when I reached the bottom, I heard Jim saying, “It’s okay Jon. I’m here. It’s okay.” I rushed into Jon’s room, and Jon was seizing. Facial grimace, clenched fists.

    Jim said that he’d come in to check on Jon, as Jon was winding down to go to sleep. Within a couple of minutes, Jon began to seize. He didn’t have a chance to call me, because he didn’t want to leave Jon.

    The seizure lasted 11 minutes. At the 10 minute mark, I got the Ativan ready. When the seizure ended, we decided not to give him Ativan. We give it to prevent seizures from going into tonic clonic mode.

    Jon was post ictal for 45 minutes, then he fell asleep.

    We can’t remember the last time Jon had a seizure. I will have to search his charts from last year and the year before.

    After every breakthrough seizure, we increase his meds slightly, which I did for his last doses this morning.

    I can’t fathom what caused this seizure, unless it’s the heat and his fluid retention. Of course, Jim and I are upset and very concerned. Nothing we can do except keep a close eye on him with Ativan at the ready.

    That thought ~ premonition or just sensing the seizure? I don’t know, but it is quite weird. I also had a premonition about an earthquake a few months ago, which happened right after I had the thought. I need to stop thinking!

    Love & Light,



    Rose
    Rose, I'm so sorry about the seizure! That's a long one! :( I'm so glad Jim was there to comfort Jon. About your "thought", I have had that happen to me. I can sense when people who are close to me are in distress before the distressing medical event happens. It usually happens during sleep for me and are more defined and specific than regular dreams so I can usually tell them apart from other "regular" dreams or nightmares. I don't know why it happens and I don't know how to tell the person I had the "thought" about that I received a warning about them. I wondered if I had a better understanding of these "thoughts" if I could have prevented the event itself or done something more to help even after the real life medical event happens. I always wondered if things might have turned out better if I had learned how to heed the warnings. My advice after these experiences is to pay attention to these thoughts whatever they are.
    About the seizure: I read something last night in the news about the tube feedings and IVs causing very high blood sugars inflaming the brain and sometimes causing seizures because they are too high in sugar. Do any of the brand changes in medications or anything else through the G tube Jon has had have more sugar in them than before??? I know you are super careful so I'm not criticizing but as soon as I read some of these tube feeds and IVs have too much sugar I thought of Jon since he's the only person I know on a G tube.
    Last edited by funnylegs4; 07-15-2018 at 05:57 PM.
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  16. #109
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    ((((((Hugs to All)))))) ~

    Mary Grace and funnylegs4 ~

    Thank you for your prayers.

    Yes, Jon's formula is full of sugar, and corn and soy, three things a person who has hypothyroid should avoid. Every enteral formula is like this. We tried a blenderized diet of real food with Jon in 2009, but his slow motility made it impossible for him to digest real food. I don't think that there is anything I can do to change his formula at this point, and this one has the lowest amount of soy, per 2009, than the others.

    I also can't do anything about his seizure meds. I'm sure that they contain sugar, because they are intended for oral use. We are back to his old manufacturer now on Dilantin, and with Depakote, we're with a manufacturer he's had several times previously, all without incident.

    Last night, Jon had two seizures, an hour apart, each one about 5-6 minutes. Same kind ~ facial grimace and clenched fists. He finally fell asleep at 2 a.m. and slept until 9 a.m. He woke up bright and cheerful.

    Jim got up at 2:30 so I could go to bed, and he kept an eye on Jon until 7 a.m.

    I'm postulating that Jon is not at peak level on his meds, when he seizes. We've been giving his meds at 8:30 p.m. Seizures start about 10 p.m. Last night, 11:00. So, we're going to give him his meds at 7 tonight. Peak is about 4 hours after meds are given, and trough is 4 hours after meds. We are slightly increasing both Dilantin and Depakote doses.

    Jon's seizures have always been sleep related. That's why he needs supervision at night.

    Jon's GI arrived promptly at 3 this afternoon. Jim filled him in on his good news, and Dr. C congratulated him. He also said, "Isn't it fantastic that scientists are continually finding better ways to treat cancer and other diseases?"

    Surprisingly, the old GTube was a little tough to get out. And then, Dr. C had a bit of a challenge getting the new one in. He said a portion of the old mushroom is probably still there, but he didn't want to fish around for it. It dissolves and is excreted through his bowels. We've never had a problem.

    When discussing Jon's edema, Dr. C said that the only way to effectively get rid of it is "in a controlled environment" (hospital), with diuretics (Lasix) and careful monitoring. I told him that we won't ever give Lasix at home again, because the one time we did, he had a seizure. Dr. C agreed that it would be best done at the hospital over a period of days. Ugh!

    Jon was all smiles for Dr. C, and he was so incredibly brave, as always.

    I am so relieved that this procedure is over. Jon's stoma looks fine, despite the trauma.

    When examining Jon's stoma, Dr. C said, "This stoma is beautiful. You take such good care of Jonathan."

    That made me feel good.

    Now we just pray that the change in dosage and timing of his meds nips the seizures in the bud.

    Thank you all for your love, prayers, and continuing support!

    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 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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  18. #110
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    ((((((Hugs to All)))))) ~

    Jim went to bed last night, and I camped out in Jon's room, watching him for seizures, as he was winding down. Four hours. At 2:00 a.m., he had a 12 minute seizure. Same presentation ~ grimace and clenched fists. I had the Ativan ready, but I couldn't get his mouth open to put it under his tongue.

    Jim came in, and we decided to give him Ativan via his new G Tube, but at that moment, he stopped seizing. About 15 minutes later, he was asleep.

    We gave his meds earlier, and increased his dosage, so that didn't work last night. Or it did, but by 2:00, he was troughing. So now, we have to alter the night time schedule.

    Like I told Jon's GI yesterday about Jon's seizures, "We are throwing darts in a dark room with a blindfold on." He seemed surprised that Jon doesn't have a neuro, because none of them will accept Medi-Cal for private patients. At least that's what they've all told me when Jon's been hospitalized (and Michael). They are obligated to help them, when they're hospitalized, but not when they're released.

    No matter. They all just tell us to try a different drug. That will not happen. I can't imagine the nightmare of weaning him off of 3 drugs, which he's been taking since he was a child. Pheno at age 2. Dilantin at age 13. Depakote at age 26. He's 48. No. I can't do that to him.

    So, tonight we try an earlier dose of his final meds. Then we watch and wait and pray.

    Thank you all for your prayers, love and support.

    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 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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