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Thread: What Is Next For Jonathan?

  1. #161
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    Oh, Rose. I say again that I wish I lived closer. Forgive me if I've shared this before, but it seems like it echoes your experience so closely. This is from a Mom in Austin, TX, Diane. Diane cares for her son who is 26 and had a traumatic brain injury. He requires total care and Diane does not have help.
    [I][I]Sometimes, it can be like being in a less that sea-worthy boat, but not too far from shore. The seas are calm, the weather warm and clear. The off-the-radar fragility is almost peaceful. Out of nowhere, you notice that you have drifted further out than you had planned. Even that does not matter so much – it is tranquil around you and the busyness of care keeps you focused.

    Then, as quickly as the winds shift, the seas begin to get rough. The skies darken, the wind picks up and the effort in the boat becomes enormous. You would like to head to shore, but you have to focus on what happens in the boat. It is harder now, with the unsteadiness and fear. You adjust to it enough to maintain, all the while knowing the storm will not last forever.

    The worst happens instead – the boat springs a leak. For every pail of water you pitch out to sea, two more will enter. The fatigue is beyond bearable, the constancy of effort, without any progress.

    Do they know we are here?

    Diane – Caregiver to her 26 year old son with traumatic brain injury

    Rose, I hope today you get some rest and Jon's fluid goes down. When he settles, let's talk again about future planning. xoxo Not today.
    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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  3. #162
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    ((((((Donna)))))) ~

    Thank you for sharing Diane's insight. Her description is excellent. Jon will be 49 next month, so I've been in that boat for nearly half a century. And you know that the older we get, the less energy and resources we have to contend with constant leaks in the boat on tumultuous seas.

    Jon improved last night, although his urine output is far less than normal, and it's dark and concentrated. His temp is normal now, and his heart rate is slowing to the 90s, while his SATS are outstanding. We intended to turn him today, but right before John was ready to come over, Jim and I realized that Jon had blown up with fluid again.

    I texted John and cancelled. We'll try again tomorrow. We hate for Jon to go so long without turning and having his wounds addressed, but if we turn him, and he vomits, it is ICU for weeks. That's one heck of a dilemma, but with an obvious choice every time.

    I have to have all of my faculties, when I delve into future planning, and as you know, my supply of them is running a tad low. But, I know that I must do this, and I will. Thanks to you I have a place to begin.

    I love you, dear friend!

    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. #163

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    Rose,

    How’s Jon doing?

    Marcie

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  7. #164
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    Just checking in to see how it's going at the Hacienda - thinking of you all! xox
    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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  9. #165
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    ((((((Hugs to All)))))) ~

    Marcie and Donna ~

    Thank you for checking in on us.

    After a long week of insomnia, increased fluid throughout his body, temps up to 101, and a very painful swollen right knee, Jon is much better today.

    Temp has been normal for 2 days. Urine output is adequate, but we wish for more to relieve the fluid. The thigh wound stopped weeping a week ago, when the urine started to slow down. So his body was absorbing all of the water that had been draining from his thigh and retaining fluid in his bladder.

    We followed our usual regimen ~ stripped him naked to bring down the temp, warm baths, irrigating his catheter to increase output, a wound care pad soaked in witch hazel on his knee, monitoring his fluid intake closely. At bedtime, we gave him 500 mg regular Tylenol. We canít give him too much Tylenol, because itís hard on the kidneys.

    His sleep improved thankfully, after two days in a row of falling asleep at 5:30 a.m. Heís now falling asleep between 12:30 - 1:30. He slept 12 hours today, so who knows what tonight will bring.

    John visited today, and we were able to turn Jon using his bottom sheet. He was in pain initially, but he settled in, and I was able to change his wound care dressings and bathe his back. His wounds are looking fairly good, thanks to Butt Paste. I ordered a case of 5 tubes. I think we should invest in the stock of the manufacturer!

    When we rolled Jon onto his back after the first turn, John said he heard a pop in Jonís shoulder. I had to hold it together, because if something happened to Jonís shoulder (meaning a trip to ER), I would have to gear up for that ordeal. And, yes, it would be an ordeal.

    Jim calmly said, ďHold on, letís see what his mobility is.Ē Jim began gently moving Jonís hand, wrist, lifted his arm up to the elbow, then higher. Jon was fine. Whew!

    After we finished The Turning, Jon was upright in his bed, smiling and asking for a concert DVD. Like nothing had happened. He just amazes me.

    Johnís mom has moved into a board and care home, a brand new home, which holds some of her furniture. Iím so glad that they needed furniture, and she could ďdonateĒ it to the home. Familiar surroundings for her.

    John said that she is content and happy to be there with 5 other Seniors, most of whom have memory loss. One resident is ďintellectually disabled,Ē as John referred to him, but he is high functioning and able to be on his own to go to the library. The caretaker followed behind him the first few times to make sure that he was safe. John and his sister are hopeful that this will be a good home for their mom.

    Jonís nurse will visit tomorrow to change Jonís catheter, so weíll assess everything, which has been going on with Jon, and weíll hope that a fresh catheter will result in better output.

    Thank you all for your continuing love, prayers, support, advice, and friendship. We love you, and our prayers are with every one of you and your loved ones.

    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. #166
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    Unhappy More Seizures!

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

    Jon had a very rough night last night. At 11 p.m., he had a 5 minute seizure. Things went downhill from there. Another 3 minute seizure at midnight, and another 3 minute seizure at 1:30 a.m.

    Between the seizures, Jon was agitated, restless, raising his head off the bed and then dropping it back, as sort of a banging motion. Moaning and groaning, he desperately wanted to go to sleep, but he couldnít.

    Opdivo caused Jim extreme fatigue this round. He slept for 5 hours during the day, and returned to bed after Jonís 11 p.m. seizure. So, I was on my own with Jon. I parked on Jonís ďchair bed.Ē Itís smaller than a love seat, and it opens into a single bed. We never use the bed, because there isnít enough room.

    Light from Michaelís room allowed me to see Jonís hands. I had the flashlight to check his catheter, etc.

    For 6 hours, I jumped up every few minutes to check Jon, to comfort him, hold him, stroke his head, hold his hand. I would stand beside him for as long as my back would hold out, about 10 minutes, then sit for a couple of minutes, and return to him.

    At 2 a.m., I decided to give him 1/2 Ativan (.5 mg) to ward off any more seizures and with the hope that heíd be able to fall asleep. The seizing stopped, but the writhing and agitation did not. Heíd be quiet for 5 minutes, and Iíd think he was asleep. Then, off heíd go again.

    I had left Jonís hands unrestrained, and he grabbed repeatedly at his catheter, which seems to be bothering him a lot, since the change on Tuesday. That resulted in blood from his penis, as well as into his drainage tube. After that, I had to restrain his hands.

    Jim got up at 4 a.m., and I filled him in. He urged me to go to bed, but I couldnít rest until Jon was asleep. I finally dragged myself to bed about 5 a.m. At that point, Jim was giving Jon the other half of the Ativan. Jon was asleep by 5:30 a.m.

    Jon slept until 3 this afternoon, although his sleep was interrupted several times by restless moans. His SATS were 91, which is low, and he was rattling. Removing his plug, he coughed out nothing. Jim suctioned, but he got nothing. SATS came up to 96. Heart rate elevated to 120.

    Heís groggy, as usual with Ativan, but heís still alert to watch movies and communicate with us.

    All of this has been happening since we were no longer able to get the generic Dilantin heís been taking for decades. Weíve gone through 2 different generic brands, and this is the result.

    On Monday, I will call the pharmacist and our PCP to discuss getting the brand name Dilantin, not generic. Heíll need a new script specifying brand name only. Medi-Cal may not pay for it. If thatís the case, weíll pay for it. We feel that Jon has a legitimate reason for needing the brand name Dilantin now. The generics arenít working and are making him worse.

    Since itís trash day, I was awakened by the trash truck at 7:30 a.m. I think I got 2 hours of sleep.

    Tonight, I will be camped in Jonís room again, while Jim sleeps. Iíll be praying for no seizures and that he falls asleep easily and early.

    Thank you all for your love, prayers, positive, healing thoughts and friendship. You and your loved ones are in our prayers everyday.

    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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  13. #167
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    Rose, it must be terrifying to see your child have seizures. I’m glad you have the Ativan. I pray tonight will be calm for the entire family but especially Jon.

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

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  15. #168
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    Hoping and praying for a quite and peaceful night for the entire family.
    Virginia
    Virginia

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  17. #169
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    Oh Rose, I was so sad and worried to read your post. I'm so sorry that poor Jon is having such a terrible time with seizures and that you are too! I hope and pray that you get (funded) non-generic dilantin soon. And I hope you all get some much needed rest. I can't even imagine. I'm so sorry - prayers are going up now. Love and healing light to you all xoxo 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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  19. #170
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    Rose I"m so sorry to hear this. Your family must be so exhausted. Sending prayers for healing and rest for your family.
    Mary Grace

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