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Thread: CN Central: MARCH UPDATES!

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    Smile CN Central: MARCH UPDATES!

    SPRING IS ON ITS WAY!

    ((((((HUGS TO ALL)))))) ~

    March is a busy month: Springing forward on our clocks; Spring arrives; Easter; college basketball ...

    For us, we're leaving behind a very busy month of February.

    Jim was diagnosed with a cataract, saw two eye docs, one a surgeon. He was scheduled for laser surgery last week, but we cancelled, because our friend, who was going to drive Jim to/from the surgery and the next day follow up, got the flu, along with his wife and daughter.

    Also, the surgeon requires a physical 7 to 10 days prior to this 15 minute procedure, and we don't want Jim in our doc's office during flu/cold/virus season.

    One eye doc gave Jim an excuse to give to the DMV to extend Jim's temporary Driver's License for 3 months, allowing Jim time to meet all of the appts. necessary prior to his surgery.

    That will also allow us time to obtain straps for Jon's lift, so that we can pull him up in bed and turn him, without straining. Jim won't be able to do what we do now for several days, and I can't do it all on my own.

    And Jon's air mattress broke last month, as I think I may have shared in our February Update thread. We finally got it repaired and returned. We didn't need a new pump, which was a relief.

    To top off the end of February, Jon's insomnia worsened, and after several days of only sleeping for 2-4 hours/day, he finally slept for 9 hours last Friday. Unfortunately, his SATS dropped to 66, and from thereon, we had quite a battle.

    He needed deep suctioning, but his suction machine stopped working! I spent 6 hours on the phone with his doc's office for a prescription for a new machine, Apria, the provider of the equipment, and our nursing agency. I talked to 7 different people at Apria, over that period of time, none of whom were helping me. At 6:30 that evening, an Apria rep told me that they no longer provide suction machines, and I was barking up the wrong tree.

    While we were doing everything we could for Jon, and he was on 2 liters of O2, he needed deep suctioning, desperately. So, I gave that rep a very large piece of what was left of my mind, and by 7:00, he called back and said they'd found a suction machine. It was delivered at 11 that night. As soon as I suctioned Jon, his SATS skyrocketed to 100%! Then he moved down to the 90s.

    This last rep, and the one before him, told me to take Jon to ER. He didn't need to go to ER! He needed to be suctioned! We were only asking for a replacement of his broken machine, so there was no need for all of the bureaucratic red tape they put me through, and all of the stress we all endured.

    Jon is doing well now, and he's stable. We discontinued the O2 on Saturday, and his SATS are fine. He's even pooping on his own! I can't believe it, and I've no idea why it's happening. I just give Thanks and Praise that our prayers are being answered.

    It's pretty bad when a patient with a trache has to beg for a suctioning machine. Well, bad is too kind. It's despicable.

    Believe me, I'm working on a complaint.

    So, now it's your turn ~

    PLEASE check in with your updates!

    Healing prayers for all every day, and lots of positive energy flowing in your direction ~

    Feel free to drop by ~



    Your smoothies await 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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    thanks for starting the March updates Rose. I know I can always count on you! It's just unbelievable what a person has to go through and then need to get so angry before getting things that are necessary. I get tired of calling and getting just an "operator" who can't make decisions and doesn't have a clue what to do. So sorry you had to waste so much time and energy on this, you're absolutely right it's despicable. Glad to hear Jon is doing better. I love March it's usually such a great transition month as far as weather for us. The sun is getting brighter and warmer days are getting longer. Kathleen's birthday is March 4th. We're very excited. Party at school with cupcakes. March 2th is her "surprise" party. She has come to expect it but doesn't know when. Our theme this year is a Pajama party. Prizes for "best dressed" It'll be small this year because we are planning a very big graduation party in July. She's been doing quite well.Walking more and doing better on stairs. I have an email out to her urologist because I've been getting blood when I catheterize her. I know a small amount once in a while can be normal but it's been a more concerning amount and it has been going on on and off for a few weeks. She has an appointment in April but I think she shoul be seen sooner. I worry because Moyamoya patients have had Moyaamoya vessels in their kidneys. Also she's had low BP on and off. The amount of blood I see doesn't seem like enough to change her BP but I may not be seeing it all since she also goes on her own. Also she takes aspirin. Her period was off too she had bleeding every 2 weeks, end of Jan. mid Feb. and then this week. Her period is usually very regular. We saw the neurologist yesterday and her brain MRI showed now changes which is good.
    Mary Grace

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    Hi ladies, not much to report except my schedule may get more busy in March so I might not be around much. Do not take it personally. No news on "L" or my teacher either yet…

    Rose, I love the rabbits on the top. I have the movie that image is from. The fact that they gave you such a run around over a suction machine is just HORRIBLE. I can kind of imagine why they told you to go to the ER though since they don't see Jon in front of them and are very unfortunately likely to jump to assumptions when they hear of somebody with a complex medical issue. I hate red tape myself,dealt with it for years and it just seems to get worse as years go by.

    Mary Grace, again Happy Birthday to Kathleen! Wish I could go to her graduation party and birthday party! You definitely need to see a doctor if her period is irregular. She could have cysts or something which might explain the bleeding. Hope it's not moyamoya causing the bleeding.
    Last edited by funnylegs4; 03-04-2016 at 05:07 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    Spent the last two days in the hospital with Tyler. Saw his Neuro on Wednesday and as he watched him writhe in pain, he wanted him admitted to do a full workup and try to discover why he is in so much pain. Big old waste of time. Every test comes out in the normal range. X rayed his entire skeletal system looking for potential fractures. Nada. Ultrasound of his gallbladder showed nothing. They watched the video and then last night, Tyler had a full-blown episode that lasted for 45 minutes, so they saw it first hand. All agree he is in acute distress, but have no clue why. Maybe a freak seizure type, but the neuro doesn't believe that. Maybe the constant UTI's are causing bladder spasms; or muscle spasms. So very frustrated. The neuro agreed that if this keeps up, Tyler will simply burn out. His body can't continue to stand that level of stress. The on call neuro watched the video and promised me he would figure this out and give Tyler some rest, but I don't expect to hear from him again. So very frustrated right now and very tired. Tyler hasn't slept since 6:00 yesterday morning. We both desperately need some sleep.
    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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    Oh Tamie, this is awful... unimaginable. What is your gut feeling about the pain source? Can't they give Tyler some morphine or something very strong to calm the pain and give the poor guy some rest and comfort? I am praying for you. 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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    ((((((Hugs to All)))))) ~

    Tamie ~

    I'm so very sorry! I was hoping that being in the hospital with tests and observation would result in a diagnosis of Tyler's pain. Maybe the on call neuro will follow through on his promise to figure it out for Tyler.

    Fractures were ruled out; how about joint inflammation?

    A member of the MS forum recently had Botox injections for bladder spasms (she has an indwelling catheter), and it worked. So if they think that's what it is, perhaps this is a route that could be pursued for Tyler.

    Have you noticed any correlation with the cathing or need to be cathed and his episodes? Full bladder? Leaking? Is his output good?

    I so understand your frustration and empathize with you. You have certainly pursued all of the avenues for a diagnosis.

    The lack of sleep ~ oh dear, how well we know. I pray that you're all getting sleep today and tonight.

    Many healing prayers continuing to flow your way ~

    funnylegs4 ~

    Thanks for letting us know that you're going to be busy this month, so we don't worry about your absence. Hope that all goes well for you.

    The Apria reps told me to take Jon to the ER to evade their responsibility to replace Jon's equipment. It was patronizing, since we are 24 hour caregivers, and we don't need to be told when to take him to the ER. The reason we have all of this equipment is to keep Jon out of the hospital. They know that. They just didn't want to be bothered.

    We'll keep the light on for you ~ and the smoothies waiting ~

    Mary Grace ~

    So glad the MRI showed no changes. That's good news. And great news that she's walking better. Yay, Shriners! Yay Mom! Yay Kathleen!

    I definitely think you should call her doc and mention the bleeding, both catheter and extra bleeding with her periods. I'd guess that both would contribute to lower BP, possibly anemia. I think it warrants an appt. earlier than April.

    A Pajama Party! How fun! You come up with great themes! Are you going to watch a movie and eat popcorn? Have a pillow fight? Talk about "boys?" Can't wait to see the photos!

    Please keep us updated on Kathleen's bleeding. Hope you get an appt. pronto.

    UPDATE ON US

    Last Weds., I called our nursing coordinator to ask her to schedule Jon's nurse to change his catheter on Monday, 3/7. She called me yesterday, Friday afternoon, and left a message to tell me that Jon's nurse isn't able to change Jon's catheter.

    Last month, Jon's nurse told us that she was going to work in the office and leave the field. She's in her mid-60s, and she was tired of working weekends, holidays, and on call at night after a long day in the field. Can't blame her at all. She told us that she would still keep Jon and one other patient (also a young man with a rare disability), as that was a condition she stipulated to her employer, before accepting the office job.

    Evidently, something changed in that agreement. The coordinator told me that Jon's nurse was "really busy in the office," and that she couldn't come out, and possibly could no longer be Jon's Case Manager.

    A nurse, whom we don't know and have never met, from a different Team, has been assigned to Jon. I'm not sure if Jon's been moved from his Team, where he's been since 1999, or if they just pulled this nurse from another team to fill in for Jon's nurse this one time.

    I called Jon's nurse and left a tearful message, begging her to call me to discuss this change. I called the Coordinator and left a message with questions. I wrote Jon's nurse an email last night.

    This is a BIG DEAL to us, because Jon's catheter placement is tricky, very atypical, and requires skill and deftness. Several years ago, a fill in nurse placed Jon's cath, and he was climbing the wall in pain, and then he bled buckets for 7 days (ended up in the ER). I fear this, rightfully. Jon is anemic. That kind of bleeding breeds infection.

    We had to irrigate Jon's catheter 4 times a day, with large quantities of saline, which we drained via a long tube into a plastic basin. It's a complicated process, where we have to remain sterile as much as possible (and that's really impossible). Jon had to be on Bacrim. Bactrim causes seizures. Etc.

    Several times last year, I asked Jon's nurse to identify the best nurse to take over for her, or to fill in for her, with Jon. I asked her to bring that nurse with her and demonstrate how to place Jon's catheter, how to draw his blood, and how to change his trache. Very few home health nurses know how to change a trache; in fact, Jon's nurse was trained by another nurse, in our home, in the procedure.

    But that hasn't happened, and now we have a stranger, who may be a wonderful person and great nurse, but she doesn't know anything about Jon and his unique needs. Jim and I will have to train her, and we'll do our best to guide her, but we've never placed his catheter before. We can teach her how to do the trache; actually, we can do his trache changes. We've only done it once in an emergency, but I'm sure we could do it again, and even get good at it with practice.

    Jon's nurse has been here every month for the past 7 years. And many more times for blood draws and other needs in between his monthly visits. And every hospital homecoming during that time. We have become dependent upon her, and losing her care is heartbreaking. Jon will be crushed, because he loves her very much and looks forward to her visits.

    He also trusts her and is relaxed and compliant with her. That may not be the case with a new, unfamiliar nurse.

    So, we start from scratch. The timing sucks. But, it's just one more thing over which we have no control. We just pray that the new nurse is loving, caring, and willing to take her time with Jon.

    Healing prayers to all ~

    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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    UPDATE ON ME: I wrote a little post for Cerebral Palsy awareness month in case anyone is interested http://www.braintalkcommunities.org/...ess-month-2016 I also heard from my teacher with the stroke. He's doing well and told me he has 2 new projects lined up for the next few months. I'm thrilled that he feels he is well enough to take all of this on but I don't want him to stress his body out too much otherwise his symptoms like those creepy dizzy spells might come back with a vengeance.

    Donna, nice seeing you around here again finally!

    Rose, Ahh yes. I know the feeling. At the moment I am communicating with someone about an accessibility issue and he is already getting defensive with me. It's like "Dude, I'm not the type to use my disability as an excuse. Just chill out. I'm asking a question here!" That's why I liked the teacher with the stroke so much. He was so patient and calm when things came up. Not like this other dude. I also know how you feel in terms of the nurse leaving. Years ago I had a close bond with a physical therapist. When I bond with a PT I treasure it because I met some pretty awful rude ones. The PT I liked suddenly moved to some kind of new position and told me I would just work with someone else. I said "I want you. I don't know how my body will react to the new person". It takes my body a little while for me to get used to a new PT because my body has to trust them and learn their "body energy" so I can allow my body to give in to stretching etc. I rather not have to go through the body adjustment period if I do not have to. The PT just accused me of being scared to try new things and meet new people and shut me down. I was like "Well (bleep) you!" Mind you I was a lot younger with a big mouth. He called me trident. He was never rude like that before i,e accusing me of being scared. You think you know a person and then when they start climbing the latter they forget you. I'm sorry you have to go through the nurse leaving.

    Tamie, So sorry you still don't have the answers you are looking for.
    Last edited by funnylegs4; 03-06-2016 at 12:42 PM.
    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)))))) ~

    Had a long chat with Jon's nurse tonight. She didn't know any of this was happening until late Friday afternoon. No one consulted her about not continuing to care for Jon. She was under the impression that she was coming out tomorrow to change his catheter, and she intended to bring another nurse, who visited with her last time (in training for home health care ~ a requirement for all new employees of the agency) to teach him how to change Jon's cath.

    So tomorrow, Jon's nurse is going to the "Big Cheese," and she's going to get everything sorted out.

    Meanwhile, I also spoke to the nurse, who is coming out tomorrow, and she was lovely, very kind, and understanding. She and Jon's nurse will be here tomorrow.

    Jon's nurse's plan is to train both of these nurses, so that they can take over when she retires, or fill in for her now, if she keeps the office job. But she made it clear to me that until she retires, Jon is her patient, and she's going to make sure that the agency knows this to be a fact, to which they agreed, when she took the office job.

    This is a failure of The System, my friends. Where, as with Apria and our suction machine, the bottom line takes precedent over the patient. Jon's nurse is a victim, both nurses, who are thrown into this situation to be trained to care for Jon, are victims, (the male nurse even asked Jon's nurse last week, if they were "still on to change Jon's catheter," and he was very excited about caring for Jon and our family). Jim and I are victims, because we are so stressed about Jon's cath change going South with a new, albeit competent and caring nurse, who doesn't know the territory. And Jon is the primary victim, because his care and his comfort and safety are paramount. And Jon is the one, who we all care about, the one for whom we want to give the best care. It's the organization that's the problem.

    We have to all fight the good fight to do what's right.

    I don't know about you, but I need to spend some time here:



    and I'm inviting all of our lovely nurses,
    so please join us ~
    Your smoothies are waiting for 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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    My films and I are getting really good press lately http://cripvideoproductions.tumblr.c...e-you-are-as-a I made a forum blog post too http://www.braintalkcommunities.org/...s-for-my-works
    Last edited by funnylegs4; 03-16-2016 at 05:29 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    I added the new press links to my press page yesterday in case anyone is interested http://cripvideoproductions.com/press.php I got an update on that women "L" she was doing well in her recovery but they gave her a wrong dose of her meds so she had a setback and started fainting again the poor thing. Pray she has no more setbacks. On the upside my teacher with the stroke wants me to visit him soon. If he gives me any updates or details on his recovery when I see him I'll let you guys know.

    Rose, How are you? I hope nothing I said in the Cerebral Palsy awareness thread upset you. I'm sorry if it did. I was just ranting. I always appreciate your help and your letting me rant so I went off ranting again.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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