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Thread: What Is Next For Jonathan?

  1. #261
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    Quote Originally Posted by Donna Thomson View Post
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    I didn't know that you were born in Russia! My husband Jim is a retired Canadian diplomat and Moscow was our first posting (1978-80). What year were you born? I wonder if I was in the country! LOL We studied russian intensively (8 hours a day plus 3 hrs of homework every night) for a year before we went and I got a job as the receptionist in the US Embassy consular section. I helped russians fill in their application forms for visitors visas. Mostly, they were grandmothers who had some family in the States. They were so nervous so I brought them tea and chatted. It was such a fascinating job and I got to be completely bilingual but of course that was 40 years ago and I've forgotten so much of my skills now! I think the hardest part of russian is memorizing all the exceptions to the rules of case endings!
    Hi Donna,

    Wow! That’s so so awesome! I had no idea you had a connection to Russia! I don’t like to say my age online at all, sorry. My Russian teacher mentioned some kind of fluency exam needed to work in Russia in Russian. Did you take any exams before working there?
    Yes Russian has like 6 cases I believe and I think if you count the plural its 12 cases…not sure. Really hard! Most of the plurals are easier for me since its an “i” type sound at the end of words. Yes my bilingual friends said knowing a language is use it or lose it.

    Hi Rose,
    My relations to Russia are too long and complicated to post but let’s just say I have plenty of people here to practice on! I would love to visit Russia someday and perhaps someday subtitle the films in Russian. Da(‘yes’ in Russian transliterated) I believe Russia does have dialects because of the fact that the country is huge and many cultures/ethnic groups are there. Google “Russian Hindus” and “Muslims of Tartarstan Russia” for an idea of what I mean. I think the Russian used in the USSR was also a bit different than today. My Spanish is Muy Malo (very bad in Spanish) (“Ploha” is Russian for bad transliterated btw) since Spanish is the language where my American accent and slight spasticity in my mouth muscles is the most obvious to others. I’m sure my American accent is obvious to native Russian speakers but it sounds better than my Spanish so its easier for me to have small talk in Russian than Spanish. When you learn languages you see that Americans do indeed have an accent and a very unique, distinct culture in and of itself. You also see how much cultural info is written into a language by its structure.
    Yes I believe the more languages you know and use the better for the brain because the language circuits are stronger. My friend with the stroke actually knows 6 languages so for all we know that might be why the language area of his brain had no permeant damage. Who knows? Sorry about the trouble with your back and the turning but glad Jon is not in pain. Prayers to you all.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  3. #262
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    ((((((Hugs to All)))))) ~

    Last night, Jon filled with fluid, SATS dropped, at one point to 59, suctioning, vomiting, oxygen at 2 liters, etc. It started about 10 p.m.

    Jim went to bed at 11 and got up at 2:30 a.m. He sent me to bed at 3:30 a.m. Jon fell asleep for about 2 hours. It’s hard to sleep when we’re constantly disturbing him with pulse ox, suction, cleaning him up.

    We withheld his formula and gave him water flushes.

    He’s better today, coughing on his own. Back on 1/2 his formula rate. O2 is down to 1 liter. He’s coughing on his own, which is great. SATS holding in the upper 80s lower 90s. Heart rate low 100s. Belly soft.

    We had to restrain his wrists, because he pulls at his trache mask. It’s uncomfortable around his neck. I think I’ve fixed that now, with it over his trache collar and gauze wrapped around it. I loosened it too. O2 via trache can be a tricky thing. The mask has to be right in front of the open trache.

    With his trache open, Jon cannot speak. So, we put our gloved finger over the trache so that he can communicate.

    I did two giant loads of Jon’s laundry today, so he’s all caught up. His new sheets arrived today. We were disappointed that they are thinner than the original sheets. Same style and number, but thinner.

    We’re hoping to be able to wean Jon off of O2 by tomorrow, but we’ll have to postpone his turn, which is quite unfortunate. We can’t risk aspiration with turning. That’s ICU on a vent.

    callyflower ~ Jon’s nurse takes photos of Jon’s wounds to share with the wound care nurse. But with this change in his wounds, you’re idea is perfect. We’ll borrow John’s iPhone, because we have an antique phone and camera.

    funnylegs4 ~ I’ll get back to you on your observations. I’m short on time and brain cells right now. You know I’m your biggest fan!

    Thank you all for your continuing support, love and 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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  5. #263
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    Thumbs up

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

    Another long night with fluctuating SATS and suctioning. We're trying to limit the suctioning, as it can beget more mucous. We're encouraging Jon to cough it out on his own, which he is doing successfully. We're using the Yankauer to suction just inside his trache,so we're not going down into his lungs, unless necessary.

    I got to bed at 3:45, when Jim took over and woke up at 7:30. Jim had been working to keep Jon's SATS up during that time. The suction canister was full, and we only have one left.

    So, I called our medical supplier through Jon's Medi-Cal plan to request canisters, lids, tubing and suction catheters. Initially, the rep, Jay, with whom I've been working over the past 4 months, said we'd have them by Monday. In my very exhausted voice, I explained what Jon's been going through, that we only have 1 canister left, and we've gone through 3 canisters in the last 2 days.

    "Please ask your warehouse to ask the vendor to expedite it overnight. This is urgent. This is homecare instead of ICU. Please help me."

    An hour later, Jay called to tell me that the supplies will be delivered tomorrow. I thanked him profusely.

    Jay said that Yankauers are not on Jon's list of authorized supplies. So, since we only have 2 left, I ordered 10 from Amazon today. I also put away the 10 drainage bags I had ordered a few days ago. I brought in more bottles of 100 ml saline, which we use for irrigating his indwelling catheter, as well as for cleaning the line after suctioning. We get a box of 50, which is heavy, but I carried it out to the garage, where we store all of Jon's supplies.

    In the afternoon, frustrated with Jon's fluctuating SATS, we agreed to take him off of O2 and put his plug on his trache. It was an experiment.

    His SATS came up to the 90s! So off came the O2, and we continued to help Jon cough on his own. He dipped into the 70s, but with a few coughs, he came up to 89-92. He's very happy to have his voice back. And that is helping him to be stronger to cough on his own.

    We're all very sleep deprived. I hope we can catch up tonight.

    Thank you all for walking beside us on our journey. Our prayers are with 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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  7. #264
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    Default Seizures, Suctioning, Sleep ...

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

    Jon had to go back on O2 last night. Eventually, we had to crank it up to 2.5 liters. Full of fluid, gagging, nearly vomited. Lots of coughing, some suctioning.

    At 12:15 a.m., Jon was seizing, when I entered his room with his seizure meds. Jim joined me, as we comforted Jon through the 8 minute seizure, both of us praying it wouldnít generalize into a tonic clonic. He had post-ictal twitching from his shoulders, which is new.

    After his seizure resolved, we had to re-insert his indwelling catheter, which had slid out too far. Just more stuff for Jon to endure.

    Jon is severely sleep deprived, which is always a seizure trigger. He fell asleep at 1:00, and Jim told me to go to bed at 1:30. Jim had napped for 3 hours earlier in the evening. I refused, because he needed more sleep. So I agreed to wake him at 3:30, so I could go to bed. As always, I camped out in Jonís room. I wish we had space for a bigger sofa!

    Jon woke up briefly at 3:00. At 3:45, Jim woke on his own, and I transferred the torch to him. Jon slept until 9 this morning, so Jim was able to get some rest and lay on his futon with the heating pad, checking Jonís vitals every half hour.

    We love our heating pads! I look forward to that moment when I climb into a warm bed (I turn the pad on for 20 minutes, before I go to bed) and my warm cosy nightshirt and socks. Laying flat on my back with the heating pad, my head on a fluffy pillow. Itís almost blissful.

    I slept 4 whole hours!! First thing I do: turn on my heating pad! Of course! Itís about the only way that I can get out of bed without debilitating pain.

    Jim and I worked together with Jon, and as the day went on, he improved. Heís down to l liter. Heís coughing on his own, no deep suctioning. His temp is 99.7, only because he wonít give up his blanket! Heís maintaining SATS from 85 to 93.

    The suction canisters, tubing and catheters arrived today! YAY! Iím not too proud to beg for whatever Jon or Jim needs. And I donít have to act, because there is always honest exhaustion and desperation in my tone.

    Iím relieved that we donít have to continue re-using the canisters, which I clean with scalding hot water and hydrogen peroxide.

    I had to order through Instacart today, so Jim was disturbed while trying to sleep, when the groceries arrived. He had to take 10 mg of Prednisone today, as his body is just aching from the last few days with Jon.

    So, we pray for a better night for all of us. We pray that Jon will be off O2 by tomorrow and able to wear his plug, so that he can talk to us. We pray for no more seizures. We pray for the fluid to leave his body, so that he can stabilize. We pray that heíll be well enough to be turned so we can address his wounds very soon.

    Thank you all so much for your love, prayers, support, and continuing friendship. As always, our prayers are with 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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  9. #265

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    How’s Jon doing? I hope he is doing better and sleeping!

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  11. #266
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    Me too, Jon’s Mom, I am worried. Too many seizures. I pray they resolve.

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

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  13. #267
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    Thumbs up Corner Turned

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

    How happy I am to report that Jon is 100% better! He is sleeping about 9 hours/day, which he needed desperately. No more seizures! Yay! Off of O2! Yay! SATS holding in the 90s, heart rate down to the 80s! Yay! He's not filling up with fluid and air, no vomiting! YAY!

    We are reducing his formula intake from 90 ml to 60 ml/hr. Of course, he's getting less nutrition, but in his condition, we feel that 90 is just pushing it too far. We will try to increase it very slowly, giving him plenty of gut rest in a 24 hour period. Given his immobility, he may not actually need 1500 calories/day. I need to get in touch with our nutritionist at the hospital for her advice. And I'm going to email Jon's GI for his suggestions.

    THE TURNING

    John was on call for us all weekend, more than willing to come over to turn Jon, but we wanted to make sure that he was stable. So John visited today, and Jon did very well with his turn. No more pain in his right leg, thankfully. I was so worried that he might have a fracture, or something could be amiss with the rod and pins in that leg (from 2005).

    Lots of drainage, after a week of not being turned, so the new mattress is officially christened now!

    Jon's wounds are not worse, and in some places we see improvement. Most particularly, I was happy to see that the old 5" tunnel wound was closing up. No drainage there! Whew! That and his coccyx are my biggest concerns. As long as his catheter leaks, he's going to have sore testicles. Nothing we can do beyond what we're doing for that. I think I'll buy some stock in Butt Paste! And Optifoam!

    CHRISTMAS PLANNING

    We talked a lot about Christmas with John today. He asked what we got Jon, and we laughed, "A new mattress and pump! A new pulse ox! And today, Yankauers!"

    John grinned, "What are 'yawn cowers?'"

    That suction thing the dentist uses to remove water and saliva is a type of Yankauer. It's used for suctioning secretions in the mouth. We can also use it to suction out the mucous/water in his trache.

    Music

    We also bought him several Blu Rays ~ new movies, and ELO concerts conglomeration. We watched a 2017 ELO concert on HBO today, with Jon's and Jim's TVs blaring through the house. We were singing and dancing. I was vacuuming, doing laundry, bathing Jon, get everything out for The Turning, bringing in supplies all to the great music of ELO.

    Jim asked John what kind of music his daughter likes. John grimaced, "Stuff I don't like. Drake, and ... I can't think of the rest of them. It's not music to me."

    "That's what my parents said about The Beatles." I added. We burst into laughter.

    But I grew up with Big Band music too, and my dad loved Stan Getz. I heard plenty of Sinatra, Perry Como, Patty Paige, The Andrews Sisters. Love all of it. But today's "music" ~ Blech.

    However, I am a big fan of Lady Gaga. She's amazing.

    NEW YEAR'S DAY PLANNING

    Anyway, John invited himself over to our house on New Year's Day to watch the Rose Bowl, with Ohio State vs Washington. He said he'd bring the pizza, then realized that his pizza would be chock full of sausage, bacon bits, pepperoni, and we're vegetarians. We assured him that we had vegetarian pizza in our freezer. So he said he'd bring a mini pizza for him.

    John said, "We'll get Jon turned and wound care done. Maybe he'll be up to coming out to the living room with us to watch the game. Or we can watch it in his room." He paused. "Would that be okay with you guys?"

    Jim and I looked at each other and smiled. "That would be wonderful with us, John."


    We are now relieved, and we've been through the crisis and come out the other side. We're still dealing with the letdown pain. When the adrenaline isn't coursing through you like a hurricane, keeping you above the water line. Jim has needed a lot of time on his futon nest with his heating pad. He's taking 10 mg Prednisone to battle the pain, but with trepidation. It's a balancing act, like a trapeze artist. Everything is like that for us.

    I actually cooked today! I chopped veggies and ground Field Roast Italian sausage for spaghetti tonight. The first thing John said, when he walked in was, "That smells great! What's cookin'?"

    It will be so nice for us to enjoy real food, after weeks of eating canned soup and frozen foods.

    Thank you for taking time to read this very lengthy post. And for your continuing love, prayers, positive, healing energy, and friendship. You and your loved ones are in our prayers always.

    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. #268
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    Smile

    :) I am so happy that Jon has improved. I imagine he would love to go to the living room for the football game. You are doing a wonderful job with he and Jim. Prayers continue. With love, Jeanie :)

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  17. #269
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    Hi Rose,
    So relieved Jon is better! The 1500 calories/day might be more due to Jon's size since I believe you said he is 6 feet tall? Not activity level. Just double check so he gets enough food. I started giving out gifts and packaging other gifts. Feel free to respond to my language comments whenever you want. No worries. No Pressure.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  19. #270
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    Thumbs up Still Doing Well

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

    Jeanie ~

    Jon would definitely love to be in the living room for the big game, especially if John is here. Iím not sure whether he could tolerate being in the chair for the entire game. While it is a comfy chair, it doesnít provide him with the support he needs for his wounds.

    So we may do the first half in the chair, and the second half in his room. Then John, Jim and I can eat something during half time. Jim and I donít eat in front of Jon, since he canít eat orally.

    Thank you so much for your prayers. Weíre praying for strengthening of your legs and no more falls.

    funnylegs4 ~

    You have a point about his size and daily caloric intake. However, activity level is a factor in caloric intake too.

    https://health.gov/dietaryguidelines...es/appendix-2/

    That chart says ďsedentaryĒ calories are 1800/day. But sedentary isnít the same as immobile. His hospital nutritionist set the amount at 1500 for him in 2009.

    The problem is that if he canít tolerate 1500 cc of formula in 24 hours, we have no choice but to reduce his intake. Weíve moved him up to 70 cc today. Heíll be on that rate for as along as he can tolerate it, and should he maintain well, weíll try increasing it to 90/hr.

    Probably most languages have dialects and different accents, which as you said, reflect cultural differences. I have traveled extensively in the U.S., and regional accents vary considerably. For example, there is the ďSouthern accent,Ē but throughout the South it is different from state to state, even regions within the states.

    Jim can identify the region of British people on TV based upon their accents.

    I think it is great that youíre learning Russian, and speaking Spanish. I love language!

    Congratulations on your progress toward Christmas gift giving. Iím still ordering! Weíll be sending fruit gift baskets to all of our doctors and to the infusion center.

    Today, I gathered up the fall/Halloween decorations. It will take me days to put up the Christmas stuff, as I can only do so much at at time, before I have to sit down and rest. Jim keeps telling me not to worry about it and that I have enough to do. Well, Christmas isnít just going to appear magically, as much as I wish it could. And, quite frankly, I donít know how many Christmases we will have together. So, Iím not going to let this one just slide by.

    Jim already has early Christmas gifts. I ordered two flannel shirts and one long sleeve cotton shirt for the ďwinterĒ to wear to his doctor appointments and infusions. Heís been wearing the same shirts for 2 years. And he was carrying a small tote with his CD player, CDs, batteries, Orgain shake, CBD candy for dry mouth, etc. Last month, I ordered a satchel for him to carry over his shoulder. Perfect. He said everyone at the medical center and hospital recognized him on sight, because of his clothes and little tote. So he needed a change.

    And now he has a book to read: Eric Idle, ďAlways Look on the Bright Side of Life.Ē He was just delighted when I surprised him with it the other day. Iíve only read the preface, which is one page, and I laughed at every sentence. This is ideal to help Jimís mood and distract him from worrying about the scans.

    I also cut Jimís hair today, so tomorrow, when he goes in for his infusion, he will be styliní!

    Iíve been very good this year and I hope Santa brings me a Roomba! (Actually, I am Santa, and I am giving myself a Roomba!)

    Holiday Hugs and Prayers for All ~

    Love & Light,



    Rose

    Ho Ho Ho!
    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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