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Thread: CN Central: NOVEMBER UPDATES!

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Smile CN Central: NOVEMBER UPDATES!


    Here we are in November ~ a very full month, with Veteran's Day and Thanksgiving. And thoughts of Christmas just around the corner. For us, it is also the month we celebrate Jonathan's and Michael's birthdays.

    We started the month today with the return of Jon's former nurse, after the agency's reorganization. We were thrilled to see her, and Jon couldn't stop smiling at her. She changed his cath and his trache and literally examined him from head to toe.

    She feels that we are doing all that we can for Jon's lymphedema and blistered foot. His lungs are clear, and his vitals are excellent. So, we have much for which to be thankful.

    He fell asleep at 8:15 this morning, so we had to wake him for her visit at 4 p.m. But he was fine with it and very cheerful. We give thanks for this too, as worrying about his sleep and waking him has been a 24/7 issue for us for a couple of months now.

    As always, this is the place for your updates, and I look forward to hearing from everyone!

    Since the weather is cooling (at least for us currently), I thought we could all chat over a cup of coffee, instead of smoothies.

    Your cup of java awaits you ~



    Love & Light,



    Rose
    Mom to Jon, 47, (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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    Happy November! Here is what I have been up to in a nutshell (see link) http://cripvideoproductions.tumblr.c...-festival-2016 I posted on the Braintalk blog too. Today also marks one full year since my teacher had his stroke and thank goodness he is still with us on this earth. Amazing how fast time goes.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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

    Today was a bit scary at our home.

    Jonís lymphedema fluid retention has been off the charts lately. Weíve been trying everything we know to do, but weíre not succeeding. After several days of releasing over 2000 cc of urine in a 24 hr period, Jonís output slowed way down. He managed to squeeze out 1300 cc the past two days, but last night, his output slowed to 25 cc/hr (instead of 50-100 cc/hr). That isnít acceptable by ICU standards (30 is the minimum).

    Heís also constipated, and MOM isnít working its usual magic. Iíve also tried glycerin suppositories and enemas, with very limited results. With the stethoscope, we hear bowel sounds, but there isnít movement. Of course, the escape hatch is a colostomy, which makes things more interesting.

    The insomnia is likely tied to his discomfort. His torso is enormous with fluid. His calves are swollen and firm; skin dry; feet blistering and weeping; knees and thighs swollen. When we apply compression bandages or stockings to his legs, it pushes the fluid up to his gut. Thatís what happened today.

    This afternoon, around 1 p.m., I heard Jonís breathing as I walked toward his room to check on him. Heíd been sleeping since 7:15 this morning. I could tell he was in trouble. I took his SATS. They were 56!!!!! His nail beds and lips were dusky. I pulled him over to the middle of his bed to straighten him, then I suctioned him. He coughed out on his own a load of watery gunk.

    SATS rose to 68. Clearly in distress. I ran out to the garage to get his adaptable trache masks, which I had ordered on line, since Apria has NEVER responded to my 3 different requests for these masks. Grabbed the O2 tubing from the closet, plugged in the O2 concentrator and hooked Jon up to O2 at 2 liters.

    SATS slowly began to rise to the 70s and 80s. Color began to return to his lips and cheeks. Nail beds began to turn pink.

    Meanwhile, Jim was at the store getting some supplies for Jon, and a musical birthday card for Jonís 47th birthday on Monday. I thought about calling Jim to ask him to come home immediately, but I expected him to walk in at any time, and I had to attend to Jon. Within 15 minutes of the onset of Jonís crisis, Jim returned home.

    Jon coughed on his own a few more times, and Jim suctioned two more times. We ďgassedĒ him via his G Tube to get the air out of his belly. I gave Jon an enema through his stoma to get his bowels moving, since yesterdayís MOM dose hadnít worked yet. We pulled Jon up in bed and repositioned him. Lowered his legs to get the pee to flow better.

    SATS came up to 92; heart rate amazingly remained in the upper 80s/lower 90s. I would have expected it to be racing in the 100s.

    With all of this going on, Jonathan smiled at us. Like Michael, Jon is the epitome of courage, and he is our Hero.

    This isnít our first rodeo. This has been happening with Jon for years. The last episode was July 4. He likes to choose holidays and special occasions to have a crisis, for some inexplicable reason.

    At 6 this evening, Jon fell asleep, and Jim and I continued to watch the Ohio State football game in our office, taking turns checking Jon every 20 minutes. His SATS have remained 92-94. Urine output still slow, some small results from the enema. Belly seems softer and not as large. So, we are making slow, steady progress.

    The flood gates will eventually open, we pray, as has been the pattern before. But the waiting and worrying still surrounds us. The ďWhat IfsĒ and the ďAre we doing the right things?Ē gnaw at us.

    And Ö BECAUSE WE DONíT HAVE ENOUGH GOING ON Ö

    It appears that our water heater is broken. We have no hot water. Jim has given it his best effort to re-light the pilot, but alas and alack, no hot water. We had it briefly yesterday after he tried to re-light the pilot, but it vanished quickly.

    So Monday, weíll be calling the plumber.

    But Iím not complaining. Really, Iím not. Weíre blessed in so many ways. As I said to Jim, when he went to bed tonight, ďWe have all of the equipment to care for Jon. We didnít have to call paramedics or go to ER. We know what to do, and we do it. Heís better. Heís home. Heís still here with us. Thatís all that matters.Ē

    To top it off, the Buckeyes won!

    Tomorrow will be better, if history is any indication. And I pray it is.

    Love & Light,

    Rose
    Mom to Jon, 47, (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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    Thumbs up

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

    For Jon's 47th birthday today, he was able to breathe on his own, without O2. He was able to speak again, because we could cap off his trache. While his urine output is still slow, his bowels have been moving, and he has been relieved of that discomfort. So, we give thanks that Jon could celebrate today at home with us.

    Somehow, I lost track of our inventory of suction catheters, and last evening, we were down to one catheter. If Jon's SATS tanked again, we had only one cath to suction and rescue him. I called the nursing agency, but it was Sunday and after 5 p.m., so we were out of luck.

    When Jon started coughing on his own, his SATS came up to 93, a respectable number by all standards, so we were able to wean him off of O2 gradually. We had gone up to 3 liters, when he crashed a second time yesterday.

    This morning, I called the agency with a long list of supplies, so that we don't run out of anything again. Jon has so many supplies, I've decided that I need to be more organized, so I'm going to create an inventory check list. Why I haven't done this before, I have no idea.

    HAPPY BIRTHDAY TO MY BEAUTIFUL SON, JONATHAN

    Love & Light,

    Rose
    Mom to Jon, 47, (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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    Hi Rose,
    Sorry for the scare with his breathing but so glad he is so much better. HAPPY BELATED BIRTHDAY JON!!!

    Interesting election to say the least eh?
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    ((((((funnylegs4)))))) ~

    Thank you for your birthday wishes for Jon. He is feeling much better now. I believe that a good deal of his problems could be resolved or at least slightly mitigated, if he wasn't constantly constipated.

    I posted my thoughts about the election in the "Politics" thread on the MS Forum.

    Love & Light,

    Rose
    Mom to Jon, 47, (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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    Happy belated birthday to Jon. Happy to hear he is having a much better day! Sounds like you have a lot going on Rose. I seriously need to get more organized with Tyler's supplies. I know who to contact, but no one else does. Keeping a written checklist would help other family members take over in my absence.

    Well, allowing the substitute neurologist to order an increase in Tyler's Dilantin without ever seeing him has backfired big time. The increase to 400mg a day did nothing for Tyler's seizures, but has made him very loopy. Finally called his Neuro and requested a level to be checked. Got the results late last night. It was at 41.6! Needless to say, we've started the slow process of reducing the dose. Tyler is still going unresponsive several times a day and being toxic on the Dilantin sure hasn't helped any. Neuro has also suggested a cardiac halter to see if there is a problem with Tyler's heart. About time!
    grandmother of Tyler (22): 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."

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    Quote Originally Posted by Tamie View Post
    This quote is hidden because you are ignoring this member. Show Quote
    Happy belated birthday to Jon. Happy to hear he is having a much better day! Sounds like you have a lot going on Rose. I seriously need to get more organized with Tyler's supplies. I know who to contact, but no one else does. Keeping a written checklist would help other family members take over in my absence.

    Well, allowing the substitute neurologist to order an increase in Tyler's Dilantin without ever seeing him has backfired big time. The increase to 400mg a day did nothing for Tyler's seizures, but has made him very loopy. Finally called his Neuro and requested a level to be checked. Got the results late last night. It was at 41.6! Needless to say, we've started the slow process of reducing the dose. Tyler is still going unresponsive several times a day and being toxic on the Dilantin sure hasn't helped any. Neuro has also suggested a cardiac halter to see if there is a problem with Tyler's heart. About time!
    Tamie, checking Tyler's heart is a good next step! I hope it finally points you in the right direction.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    ((((((Tamie)))))) ~

    Thank you for your birthday wishes for Jon. Still dealing with insomnia, but SATS and vitals are good.

    That's a very frightening toxic level on the Dilantin! Yikes! Do you feel comfortable with increasing the wean to get him out of toxicity? I know that's a difficult decision. Been there many times.

    How long did it take to get the referral for a cardiac halter? This has been going on for at least the whole year, hasn't it? My goodness!

    How are you feeling?

    Continuing prayers for healing, answers and solutions~

    Love & Light,

    Rose
    Mom to Jon, 47, (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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    Had to drop Tyler's Dilantin dose down all at once. Just too high to mess with. So far, we've seen a few more seizures, but not as bad as we feared. Have a 6 hr. EEG scheduled for Dec. 6, an ENT appointment next week and still waiting to receive the heart monitor in the mail. Took Tyler up to the cabin for the weekend. It was beautiful in Big Bear. Low 60's during the day, but down to 28 at night. BRRR. He did the best we have seen in a long while. Came home yesterday and got stuck on the freeway due to the brush fire off Gopher Canyon. Took us 3 1/2 hours to get home. Tyler was screaming with a full blown AD episode for the last 45 minutes. Perfect timing. Frazzeled by the time we got home.

    Youngest grandson got an infection in his knee so my daughter and I spent hours in the Urgent Care and then the ER in Big Bear. Had to have the knee lanced and thoroughly cleaned out. Not a pleasant experience for a 7 yr. old. Both docs were afraid of a flesh eating bacteria or osteomyelitis. Very scary. Temp of 102, knee swelling, red and hot. All because he slid down a plastic slide at a carnival on Halloween and scraped his knee. The infection just showed up Friday morning and took off like nothing I've ever seen. Lucky we caught it when we did. They cultured the wound and we should know today what kind of infection it was. I've had enough excitement for this month. No new surprises please.
    grandmother of Tyler (22): 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."

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