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Thread: What Is Next For Jonathan?

  1. #391
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Default Back On O2

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

    Last night, Jon's SATS dropped to the 80s, so I removed his trache plug, and he coughed out a goodly amount. SATS rose to the 90s. This continued on through the night, with SATS dropping to the 70s. We suctioned a couple of times, which helped, but he couldn't hold his SATS.

    Jim slept through dinner time and beyond, woke up briefly for a bathroom break and a jam sandwich, then took some cough medicine and went back to bed.

    Meanwhile, I camped out in Jon's room. I finally put him on O2 at 1 liter then increased it to 1.5 liters an hour later. I fell asleep on his chair bed at about 5:30. At 6:00, Jim woke me up to go to bed. I did. At 9:15, Jim woke me up, because he didn't know what Jon's current Depakote and Dilantin doses are, and it was time for Jon's morning meds.

    The doses are now clearly written on our fridge notepad, with times for doses, which I know he knows, but may forget. I will also show him exactly how I fill the syringes and knock the bubbles out of the meds. There is a trick to it, and these meds are viscous and sticky. I also may just fill the morning med syringes before I go to bed, so they're ready to go. That's a good idea.

    JON'S TURN AND JIM'S APPOINTMENT

    The goal was to turn Jon today, despite his low SATS, because it has been 4 days since his last turn. John said he'd be over at 4:00 p.m. Jon was asleep at 2:00 p.m. finally getting a respite from working so hard to breathe.

    We agreed to defer the turn until tomorrow. John will take Jim for his CT scan and mold design for his torso to be used with the radiation treatments. If Jon is awake, John will return and we'll do the turn. Then John can go back and pick up Jim. Otherwise, the turn will occur when John brings Jim home.

    Tomorrow, it will be a week since Jon's blood draw and sputum sample. I guess I need to email our doctor for the results. I'm disappointed that he hasn't contacted us yet.

    I need to find a pharmacy that carries or can get oral Nystatin. The salt water swabbing does seem to be helping a little bit, but I can't see to the back of his throat, as he's not fond of opening his mouth or saying "Ahhh..." Jim and I suspect that the thrush is a factor in his congestion.

    GET SOME REST!

    Jim and Jon are sleeping now. Perhaps I should curl up (literally) on Jon's chairbed and take a nap too. I don't really nap, because I have to monitor him. And if I do dose off, I wake up in a panic. "What time is it?" "Check Jon!" "I Need to Wake UP!" Not really restful.

    John texted to me this afternoon, "Try to get some rest."

    When he said that to me last week, after he brought Jim home, I said to him, "It's not like I'm avoiding rest or sleep, John. I'm not partying all night and day on a cruise. There are 5,000 things happening at once here, so finding time to rest is not an option. Even when I rest, I'm not really resting. I'm waiting to do the next thing that needs to be done."

    TECH WOES

    In addition to turning Jon tomorrow, John has been commissioned to program our new TV/cable remote. Out of 3, we were down to one, which barely works. So I bought 3 new ones, cable compatible, and I attempted to program the one for Jim's TV. Did not happen.

    Jim attempted to hook up the new Blu Ray player I ordered from Amazon, after Jon's Blu Ray player said, "I'm done, y'all!" Jim moved his Blu Ray player to Jon's TV, then attempted to hook up the exact same player to his TV. Did not happen.

    So that's the second high tech task on John's list tomorrow.

    I told Jim, "I know how much you want your iPad, and I need to get that coordinated, in my spare time, so you can have it. But the truth is that neither one of us is going to be able to figure out how to use it, if we can't even program a TV remote or set up a very simple Blu Ray player. Let's be honest."

    Jim said, "It can't be that hard. It's just like a computer, and we figured that out."

    I responded, "Okay. A. That was 20 years ago, when our brains were pliable, and we could remember things. B. Our computer is 6 years old, and it's never been upgraded thanks to me. C. When was the last time you used the computer? Like 3 years ago? D. An iPad is not like a computer, just because it's an electronic device. E. We can't program the remote."

    Maybe I could figure this stuff out, if I had less extremely important life and death things to handle. And, I don't know, sleep or rest ... ?

    I'm satisfied that we aren't using dial up. I'm just thrilled when the computer works, and we don't lose our connection. That's really enough for me at this point.

    Thank you all for your love, prayers, support, and following us on our journey. It's a jungle out here!

    You and your loved ones remain in our prayers.

    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. #392
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All)))))) ~

    Last night, Jon's SATS dropped to the 80s, so I removed his trache plug, and he coughed out a goodly amount. SATS rose to the 90s. This continued on through the night, with SATS dropping to the 70s. We suctioned a couple of times, which helped, but he couldn't hold his SATS.

    Jim slept through dinner time and beyond, woke up briefly for a bathroom break and a jam sandwich, then took some cough medicine and went back to bed.

    Meanwhile, I camped out in Jon's room. I finally put him on O2 at 1 liter then increased it to 1.5 liters an hour later. I fell asleep on his chair bed at about 5:30. At 6:00, Jim woke me up to go to bed. I did. At 9:15, Jim woke me up, because he didn't know what Jon's current Depakote and Dilantin doses are, and it was time for Jon's morning meds.

    The doses are now clearly written on our fridge notepad, with times for doses, which I know he knows, but may forget. I will also show him exactly how I fill the syringes and knock the bubbles out of the meds. There is a trick to it, and these meds are viscous and sticky. I also may just fill the morning med syringes before I go to bed, so they're ready to go. That's a good idea.

    JON'S TURN AND JIM'S APPOINTMENT

    The goal was to turn Jon today, despite his low SATS, because it has been 4 days since his last turn. John said he'd be over at 4:00 p.m. Jon was asleep at 2:00 p.m. finally getting a respite from working so hard to breathe.

    We agreed to defer the turn until tomorrow. John will take Jim for his CT scan and mold design for his torso to be used with the radiation treatments. If Jon is awake, John will return and we'll do the turn. Then John can go back and pick up Jim. Otherwise, the turn will occur when John brings Jim home.

    Tomorrow, it will be a week since Jon's blood draw and sputum sample. I guess I need to email our doctor for the results. I'm disappointed that he hasn't contacted us yet.

    I need to find a pharmacy that carries or can get oral Nystatin. The salt water swabbing does seem to be helping a little bit, but I can't see to the back of his throat, as he's not fond of opening his mouth or saying "Ahhh..." Jim and I suspect that the thrush is a factor in his congestion.

    GET SOME REST!

    Jim and Jon are sleeping now. Perhaps I should curl up (literally) on Jon's chairbed and take a nap too. I don't really nap, because I have to monitor him. And if I do dose off, I wake up in a panic. "What time is it?" "Check Jon!" "I Need to Wake UP!" Not really restful.

    John texted to me this afternoon, "Try to get some rest."

    When he said that to me last week, after he brought Jim home, I said to him, "It's not like I'm avoiding rest or sleep, John. I'm not partying all night and day on a cruise. There are 5,000 things happening at once here, so finding time to rest is not an option. Even when I rest, I'm not really resting. I'm waiting to do the next thing that needs to be done."

    TECH WOES

    In addition to turning Jon tomorrow, John has been commissioned to program our new TV/cable remote. Out of 3, we were down to one, which barely works. So I bought 3 new ones, cable compatible, and I attempted to program the one for Jim's TV. Did not happen.

    Jim attempted to hook up the new Blu Ray player I ordered from Amazon, after Jon's Blu Ray player said, "I'm done, y'all!" Jim moved his Blu Ray player to Jon's TV, then attempted to hook up the exact same player to his TV. Did not happen.

    So that's the second high tech task on John's list tomorrow.

    I told Jim, "I know how much you want your iPad, and I need to get that coordinated, in my spare time, so you can have it. But the truth is that neither one of us is going to be able to figure out how to use it, if we can't even program a TV remote or set up a very simple Blu Ray player. Let's be honest."

    Jim said, "It can't be that hard. It's just like a computer, and we figured that out."

    I responded, "Okay. A. That was 20 years ago, when our brains were pliable, and we could remember things. B. Our computer is 6 years old, and it's never been upgraded thanks to me. C. When was the last time you used the computer? Like 3 years ago? D. An iPad is not like a computer, just because it's an electronic device. E. We can't program the remote."

    Maybe I could figure this stuff out, if I had less extremely important life and death things to handle. And, I don't know, sleep or rest ... ?

    I'm satisfied that we aren't using dial up. I'm just thrilled when the computer works, and we don't lose our connection. That's really enough for me at this point.

    Thank you all for your love, prayers, support, and following us on our journey. It's a jungle out here!

    You and your loved ones remain in our prayers.

    Love & Light,



    Rose
    Actually an iPad appears to be similar to the newer Mac laptops so Jim is right in that sense. However I can't seem to figure out iPads either. Yet my elderly friends totally did figure them out so who knows? I usually call tech support for TV remotes but the basic gist of programing a TV remote is to press a program button then a bunch of other buttons at the same time. I would set them up for you if I could. Sorry about Jon needing O2.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  5. #393
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    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    Our Mac is 6 years old, so I have no idea what the new Macs look like. I followed the instructions enclosed with the remote, and I still couldn't get the cable box to work. I don't have the patience or energy to keep messing with it. I also hate calling our cable company. It's exhausting. John can probably do it within 2 minutes.

    Just trust me that Jim will not be able to figure out how to use an iPad. His memory loss is dreadful, and I can imagine him calling me, when I'm in another room, or doing something like making dinner or cleaning, "Rose, I can't figure out how to ..." So, I then have to stop what I'm doing to solve his iPad problem.

    This is already happening, and has been for some time, except Jim talks to me, when I'm not in the room with him, or have the water running, or the TV is loud, and I have hearing loss in my left ear. I stop what I'm doing, if I'm not in the midst of something with Jon, then, I just holler back to him, "I'm busy. I can't hear you!"

    And 90% of the time, it isn't important. He just wants to chat with me. A thought enters his mind, and he wants to say it out loud to me, before he forgets what it is. Often, by the time I get back to him, even if it's seconds, he's forgotten what he said.

    I have so many things I have to do, think about, remember, problem solve, etc. that I don't have time or energy to devote to technology. This is one of the few areas, where I need help, and I'm grateful to John that he's willing to help us. John is also a good teacher, so he will show us how he does it. Whether we retain that information is a different story.

    JON'S UPDATE

    I spent the night in Jon's room again, checking him every 10 minutes, cleaning up the goop he coughed out, comforting him. He fell asleep at 4 a.m. Jim had taken codeine at 2:00, so I knew that he couldn't relieve me. When I felt fairly confident that Jon was safe and sleeping well with good SATS and heart rate, I went to bed at 6 a.m.

    Evidently, Jim woke up shortly thereafter and kept an eye on Jon. I woke up at 8:30 with a horrid cramp in my left calf. I figure I had 2 hours of sleep at most.

    Jon woke up at 9:00, and I knew he would fall asleep again later, which would affect our timing of The Turning. And, he did. At 11:30, he was sound asleep, on 1 liter of O2.

    John picked up Jim at 1:45 for Jim's fitting for his radiation treatment. Jon was still sleeping, so we postponed his turn until John brought Jim home.

    Jon woke up at 2:45, so I bathed and shaved him, took him off of his formula, gave him MOM to get the bowels moving again, and waited.

    Jim and John arrived about 4:15. John and I turned Jon. His wounds look awful. I'm so discouraged. It has to be so painful for him.

    I told John about the WOCN scheduling an appointment the night before his visit, when Jon was too ill to be turned. I told him that he gave us a 2 hour window of 11 to 1:00. I reassured him that I made it clear to Jon's nurse that we need advance notice, we need a concrete time, and it has to be after 2 p.m. on a Tuesday, because that's the day she works, and she wants to be here. The WOCN will have to accommodate us, rather than us accommodate him. So, who knows when that will be? Meanwhile, Jon suffers.

    OFF O2 EXPERIMENT

    To turn Jon, I turned off the O2 and put Jon's trache plug on. He held SATS of 80-91, which is respectable. About an hour after we finished his turn, his SATS dropped to 77, so he was back on O2. Also discouraging.

    He's falling asleep now, so there is little hope of me getting any sleep before 6 a.m. again. He'll sleep for several hours, wake up at midnight, and drift off again a few hours later. Jim is in no shape to stay up with Jon right now, but I'll explain that in Jim's thread.

    I despise Daylight Saving Time. It takes so long for my body to readjust to the hour difference. Right now, I am losing an hour a day, which affects everything. Jim is bemused to an extent about my rebellion toward DST. My response is predictable every 6 months. This time I reacted with, "Great! Just what I need - losing another hour of sleep!"

    Thank you all for your continuing prayers, love, support and being here for us. We love you and pray for you and your loved ones 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 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. #394
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    Default Test Results and Decisions

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

    Jon is not doing well. Still on O2, still coughing out a lot of pale watery mucous.

    Our Primary Care doctor finally emailed me about Jon's blood work and sputum sample results. Jon's Hemoglobin is low, but he didn't mention WBC or RBC. His Dilantin level is 9.9, and that was at a peak time, not trough. Range is 10-20, and Jon's therapeutic level is 11-13.

    Sputum sample tested positive for pseudomonas, the same bacteria in his urine. Not surprising. Now, we are faced with the decision to give him antibiotics, all of which are problematic for Jon in that they affect Dilantin levels, one affects Depakote levels, and the others have so many side effects. I have a long list, which I researched, and I'll have to go through it again to see if I can identify the least obnoxious option for him.

    This isn't easy. But we need to do something, because he can't continue on this way. I pray for Divine Guidance and Divine Intervention

    THE TOENAIL TEAM

    The two lovely ladies on the Toenail Team arrived today, just as Jon was wanting to go to sleep. Jon is infatuated with both of them, as they are very pretty and so sweet to him.

    The woman, who actually cuts Jon's nails has been with us for about 6 years, and she's family to us (along with her daughter, who was her assistant and is now a surgical nurse). She is in her 40s, and she is a pro. For the first time in all these years, Jon's ingrown toe nail on his left big toe is under control. She has just boldly cut away at the nail until there is practically none left. The site looks clean and didn't bleed today. She's amazing.

    She hadn't received my numerous texts from last night, so when I met them at the door with gowns and masks, she said, "Oh dear, what's going on?" Her dad died of brain cancer, so she's very well informed about what Jim is going through. So we had a chat with them in the living room to bring them up to date.

    When they left, I collected their gowns and masks in a bag and walked them to their car. She told me to try to take time for myself and get some rest.

    For the first time on this journey, I said out loud, "I'm taking care of Jim and Jon, because they want to be here, and I need them to be here. We are a unit, and we are doing all we can to stay together. They are suffering. I'm not. They have the illnesses and the struggle to win. I am facing losing both of my children and my husband. I don't want to be alone. I'll have plenty of time then to rest and sleep. It may be the only thing I'll want to do."

    Tearfully, she rushed over to hug me. "We'll always be here for you."

    NURSE VISIT

    Jon was asleep, when his nurse arrived. She was here only to get my signature for Jon's re-certification for services. She will visit next week to change Jon's catheter. She ordered 2 visits per month, plus PRN visits.

    We discussed pseudomonas and the dangers of the antibiotics. She completely understands why we're on the fence about our decision.

    She said that she would send a photo she took a couple of months ago of Jon's bottom and send it to the WOCN. I asked her to tell him what we've tried and to ask him for suggestions. It may be the only way we can go forward on Jon's wounds. He hasn't contacted her again about visiting. I guess it's inconvenient for him.

    THE TURNING

    John and I turned Jon yesterday, and his wounds looked slightly better. Jon had peed over his catheter, as it had slid out, so I had to reinsert it twice. He's peeing well now and not leaking.

    Thank you all so much for your love, prayers, positive, healing energy. Our prayers are with you and your loved ones every day.

    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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  9. #395
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    ((((((Hugs to All)))))) ~

    After copious amounts of mucous spewing forth last night, Jon was able to settle down and sleep.

    He woke up with a slight cough and little production, and his SATS rose to 100! So, we cranked down the O2 from 2.5 to 2.0 to 1.5 liters, and he's still doing well. Very little coughing and production, and maintaining SATS in the mid 90s.

    We remain hopeful.

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

    We love you and pray for 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 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. #396
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    Oh, Rose. Oh, Rose. I wish I could be there to rush over and give you a hug too. Of course you are where you need to be, doing what you need to do. And I am so glad that Jon is doing better. May it continue. 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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  13. #397
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    Thumbs up Progress

    ((((((Donna)))))) ~

    Thank you for your hugs and prayers.

    Jon had a bad night, with copious mucous and needed suctioning. Finally he slept for 5 hours and woke up with no cough.

    When John arrived this afternoon to turn Jon, I took Jon off of O2 and placed his trache plug. His SATS were holding at 88-90. Jon did very well with the turn, and his wounds do look a bit better.

    I was prepared to put Jon back on O2, but his SATS were still holding between 88-91, so we decided to leave him off of O2. He's sleeping now and still holding those SATS. A trache mask rests on his chest, just in case.

    It's been wonderful to hear his voice again after 10 days. I pray that we are at the end of this respiratory setback.

    Many prayers for Nick's full recovery, and for rest and rejuvenation for you and Jim after this very stressful crisis.

    We love you!

    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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  15. #398
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    Thank you for this good news, Rose.

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

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