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Thread: CN Central: DECEMBER UPDATES

  1. #11
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    Hi Rose, How is Jon today? Sending healing prayers 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


  2. #12
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    I'm finally catching up on updates.
    Rose praying that Jon is improving and there will be no crisis! Praying for a restful peaceful, and healthy Holiday season for your family. Decorating for Christmas can be exhausting for me it also means deep cleaning too.
    Funnylegs, Do you know if your teacher is getting any therapies? It may be helpful with the dropping, fumbling and even the dizzy spells. Meeting with therapists would give him a contact with professionals who can understand and advise him on the symptoms he experiences. After Kathleen's strokes she spent a month in a rehab hospital. She didn't even know her left side existed. She had to relearn everything. that for us was obvious but there are so many less obvious effects from strokes that he could talk about to therapists and get the proper feedback. It may help him feel safer and less stressed. There are some facebook stroke survivor groups that can be really helpful also. I belong to Young stroke survivors as a caregiver and I've learned a lot and see a lot of great support for the survivors in the group. You were right to tell him to be patient, it's a process and resting when tired is very important and taking care of your general health. There are so many new studies on how the brain can repair and compensate, something that was not thought possible before. But it takes time and working at the things that are affected. Listening is the best thing you can do right now and reassuring him that he can do this and there is always help... Keep us posted...
    Donna, so glad to hear that Nick is doing well. Sending many prayers for a healthy, happy and safe, holiday.
    Tamie, Happy Birthday to Tyler!!! I hope you all had a wonderful celebration! Praying for a healthy year to come.
    CPchick, Congratulations on such a huge accomplishment! That's fantastic! I hope it's a fabulous celebration for you.
    I hope I covered everyone...
    Our update, Kathleen continues to walk better and better. She's starting to ditch the cane and just hold my hand. I got a blood pressure manual unit and have been checking it randomly. It hasn't been too bad a little low. We saw the nephrologist yesterday and he doesn't think that her kidneys are involved in the pressure changes. But she is scheduled for the MRI of her kidneys the end of January so if that shows any issues we'll go back. He was great spent an hour with us going over. her complicated health history. Next week she sees the Endocrinologist about the thyroid antibodies. We put our tree up and decorated it Sunday. I got most of the Christmas decorations out and the fall decorations almost put away. I'll try and get a couple pictures and maybe even a video of Kathleen walking without the cane.
    Prayers for all my friends here for a happy, healthy, and safe holiday season!
    Mary Grace

  3. #13
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    ((((((Mary Grace)))))) ~

    So happy to hear that Kathleen is walking well and without her cane! I'm really looking forward to the video of Kathleen walking! How wonderful!

    I hope that the MRI in January will rule out Kathleen's kidneys as the culprit for her low BP. I'm glad you like the nephrologist. That's great that he spent that much time with you. As it should be with every doctor.

    Maybe the endocrinologist will have some clues. Please let us know the results of that appointment.

    Christmas is on its way in your home! May it be filled with Joy!

    Love & Light,

    Rose
    Mom to Jon, 48, (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.

  4. #14
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    Thumbs up Jon's Update: Improvement!

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


    Thank you so much for your prayers and healing energy for Jon. He is much improved today.

    At midnight, Jon was winding down to go to sleep, and when I pulled him over in the bed, then conducted my routine “body check,” I discovered that Jon had pulled out his catheter!

    Blood everywhere! I cleaned him up as best as possible, without giving him another bath, as he slept. Thankfully, we have maintained a supply of condom catheters, so I slipped one of those on him and prayed. It took him about 7 hours, but he finally urinated through the condom cath, accompanied by a fair amount of blood.

    I gave thanks that at least he did this the night before his nurse’s visit, and not while she was on vacation or had a day off.

    By the time his nurse arrived this morning, Jon’s urine was clear, no traces of blood. Of course, we were all aware that inserting a new catheter could initiate bleeding, but the catheter went in smoothly, and the return was and continues to be clear! Giving more thanks!

    The blood draw went quite well; Jon is being so much more cooperative these days. I guess he’s become accustomed to it. It only took 46 years. Plus, it looks like his nurse has found a “sweet spot” to draw the blood, as she’s been successful the last two times getting it on the first stick. It helps immensely that Jon is not resisting.

    We’re checking his seizure med levels, and I think a Complete Metabolic Panel. Jon's nurse felt that would give us more information than a CBC.

    Jon obliged by coughing out his gunk into a sterile cup for a sputum sample. It’s thick, but the color is a lighter green than it was. His nurse said that the congestion sounds like it’s in his upper airways, which is what we thought, given that deep suctioning brought up nothing.

    His vitals are all good. Temp, BP normal and his SATS have been holding at 93-94 during the night and today. Heart rate is coming down. If he had pneumonia, we would expect his vitals to give an indication of sickness, or a worsening in his vitals, as happened in August.

    We didn’t take a UA, because he doesn’t present clinical signs of a UTI.

    Mother and Daughter Podiatry Team arrived about 1:15, and Jon was pleased to see them. All of his lady friends appearing in one day! Wow! Party in Jon’s Room! And they flirted and chatted with Jon, and he ate it up with a spoon. Got all shy and such ~ his flirtation mode!

    You might wonder why we have podiatry care for Jon ~ he has chronic ingrown toenails on both big toes, which the daughter removed today. She uses our German clippers (the same as they use, but Jon’s clippers haven’t been used on anyone but him), which neither Jim nor I can manage any longer with our arthritic hands. Additionally, Jon has granuloma tissue under each nail, so one slip of the clippers, and he bleeds.

    Jon is pretty worn out from all of this commotion in his life recently, and at 6:00 this evening, he fell asleep. He’s been wanting to do that all day, and he finally gave in. He has a lot of sleep loss to make up for, and we’re happy to see him sleeping.

    Jim went to the store today, after Jon's nurse left, and he missed the Podiatry Gals. We were literally running out of food. And neither one of us can afford to not eat, which we haven’t been doing much of this past week. I’ve been too tired to cook, even if we had food for me to prepare! I’m a bit more relaxed this evening, and Jim brought home some lovely fresh veggies, so I hope I have the energy to cook us a nice meal tomorrow. He bought more Russet Potatoes, and I asked, “English roasted potatoes again, dear?” And Jim said slyly, “If you want them.” And I replied, “Twist my arm!"

    Jim went to bed a couple of hours earlier than usual today, with the hope that he’ll get enough sleep to get up earlier, so I can go to bed before 2 a.m. We’ve all been sleep deprived.

    So, we give thanks for the blessings of Jon's improvement and for the wonderful medical professionals on our team, who care for and love Jon and our family. And we give thanks for you, our dear friends, and for your support, love, and prayers. It means everything to us to know that we are not alone on our journey.

    Blessings upon you and your loved ones ~

    Love & Light,

    Rose
    Mom to Jon, 48, (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.

  5. #15
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    Hi Rose, I love hearing about Jon's day with the ladies! Typical guy through and through! He's lucky that the girls give him all that special attention. Not many guys are that lucky. I'm so glad he is improving! I don't mean to pry but what is a condom cath??

    Mary Grace, I sent you a pm. Glad Kathleen is doing well and making progress with her walking. Love the walking video idea! Do it! Thanks so much for your advice on my teacher! I think he does have some kind of therapy since I saw him using a breathing technique that was similar to something I had learned in my therapy. I hope he gets to take advantage of new neuroplasticity based therapists. Seems like some people with stroke can more easily access these therapies compared to people with CP.
    He had 2 really good days where he had a lot more energy but then he had another rougher day. He looked drained and weak. It was noticeable enough that he could no longer hide it. The other students picked up on it more easily. One of the students said "You look so tired. You alright?" My teacher was like "Yes, just a little tired. " and gave his usual smile. We forget he is still a bit physically fragile but he handles it like a trooper. He even seems to enjoy when some of the students hassle him because that's how they treated him pre stroke. He told us that once his job with us ends he plans to take another job on almost right away and he clearly has his stubborn heart set on it already. I have to wonder if this is really a good decision or not on his part. I hope he at least warns these new people about his stroke so they don't accidentally push him past his new limits on a good day when the symptoms are unnoticeable. He also told me something incredibly sad. A family member of his had died instantly of the exact same type of stroke years ago, that he just narrowly survived. No wonder he was scared! Can stroke risk be genetic?? He assured me he would continue to stay in touch with me and be there for me if I need him in the future. That meant the world to me! Wow!

    Still working on the Christmas gifts over here but making progress.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  6. #16
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    ((((((funnylegs4)))))) ~

    You aren't prying at all. A condom catheter is the same thing as a condom, except that the end has an opening to attach to a urine drainage bag. This is an option to wearing a diaper or having an indwelling catheter for men.

    Jon had problems emptying his bladder, due to his enlarged prostate, which caused UTIs. So in 2011, we had to choose the indwelling catheter for Jon to prevent a build up of urine and potential infections. We kept his condom catheters on hand, just in case, and twice now, we've been happy to have them, as he pulled out his indwelling catheter.

    It takes a lot of time, effort, and energy to recover from a severe neurological event, like a stroke, so be patient, and know that your teacher is making progress.

    I don't know whether strokes can be hereditary, but I suppose that the tendency could be inherent, or possibly a specific genetic brain anomaly could be passed on between generations. Try searching Google ~

    OUR UPDATE

    A week ago tomorrow, Jon's nurse was here to draw blood and take a sputum sample. We still don't have the results. I guess all of the medical professionals, who have reviewed it, think Jon's okay, so there's no need to inform us of the results.

    I called the Nursing Coordinator today, and she said she'd find the results, give them to her supervisor, who is an RN, and the supervisor would call me to interpret the results for me. She didn't call. I don't need interpretation. I am quite proficient after 46 years of reading lab results to figure them out on my own. I just want to know what they are! Why is that so difficult for them to understand?

    Meanwhile, today, Jon's SATS have been upper 80s and lower 90s, heart rate up, temp a bit up, and he's filled with fluid, although he is peeing well, but not pooping. It's confounding and frustrating.

    It finally rained here last night. The ground was actually wet. Today, we had strong winds, gusting up to 25 mph. The temp will drop to the mid 30s tonight, which is unheard of here.

    Sending up healing prayers for all ~

    Love & Light,

    Rose
    xo xo xo xo
    Mom to Jon, 48, (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.

  7. #17
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    Funnylegs, Thank you for the PM. I DVR'd the show but didn't watch it yet. As Rose said a Traumatic brain injury such as stroke can take a long time to recover but rest good nutrition and patience helps. Hopefully he is learning to listen to his body. That must have been scary for him knowing a family memeber died of the same stroke. I think it depends on the type of stroke and cause. My dad died from a ruptured Circle of Willis Aneurysm. This type of aneurysm is hereditary so I wad checked out a long time ago. My sister had the same type and had surgery to treat it. You are a great friend and hopefully your teacher will stay in touch with you and you can continue to support him through this.
    Rose, praying that things stabilize for Jon. Our weather has been really crazy. 50's and even 60 for a couple weeks now. Really windy today here.
    Our update... I did get a couple videos of Kathleen walking with her school PT and working on stairs. She's even more steady than she was just before surgery. I love her new AFO that Shriner's made her. Her gait is better and she's not dragging her left foot like she used to and so far her knee isn't hyperextending. Tomorrow is he appointment with the Endocrinologist. I'll work on getting the video up...
    Mary Grace

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    Last edited by mg12061; 12-15-2015 at 07:24 AM.

  9. #19
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    ((((((Mary Grace)))))) ~

    Wow! Kathleen is walking beautifully! Up and down stairs! Fantastic!!!

    Steady on her feet, gait is significantly improved, and she looks confident and proud. I'm so happy for Kathleen and you and your family. What a wonderful Christmas gift!

    Hope that all goes well with the endocrinologist tomorrow. Please let us know what you find out.

    OUR UPDATE

    The assistant to Jon's doctor called this morning with Jon's lab results. She said that Jon is out of range on several things, BUN, creatine, sodium (his range is lower than normal, so it was within his normal range), red blood cells (only slightly below normal, and that's because he bled the night before, when he pulled out his catheter). She said that the doc hadn't commented on any of the results, so he must think Jon's fine.

    The sputum sample, after an entire week, is still pending. Well, that's certainly helpful! Of course, we still don't know the results of the sputum sample we gave in August. But we ended up in ER then, and an x-ray confirmed that Jon had pneumonia in his lower left lobe.

    I asked for the Dilantin and Depakote levels. She responded: "There aren't any." WHAT?!?!?! You may have heard me exclaiming that ~ no matter where you live, including you, Donna. First, I was incredulous. Then, I was livid.

    Jon's nurse took 3 vials: CBC, CMP, Dilantin & Depakote. I know this for a fact, as I was part of the team collecting the blood, as she handed each vial to me.

    I emailed his nurse, who then called me to say that she didn't know what happened. The lab messed up, apparently. She offered to come out to redraw Jon today, but he'd had his meds 2 hours prior, so the results would be invalid. She'll be here tomorrow at 8:30 a.m. to redraw for the D & D levels.

    I also learned from the doc's assistant that Jon's labs have to be under the doc's account with the lab, not under the nursing service account, for those results to be posted on Jon's health portal. Good information to know ~ just wish that I'd known it when we started the portal in May. Here's a novel idea ~ why can't it be under both accounts, so both the doc and the nurse know the results?



    The good news is that Jon's fluid is down, thanks to the compression stockings, and his colostomy is erupting like a volcano. YAY! His heart rate is excellent, but his SATS are still in the low 90s. He is lethargic about 2 hours after his med doses, so I strongly feel that he's in a toxic range. However, with the output, that may change things.

    My brain is exhausted from trying to figure out everything and keep on top of the incompetency surrounding us everywhere we turn. It's almost a thrill for us, when something turns out the way it should.

    Christmas ~

    Jim ventured out into the blustery cold (for us anyway ~ about 55 degrees with 10-15 mph gusts ~ the past 2 nights, gusts up to 25 mph) to get lights for our new Christmas tree. I think he bought enough lights to put on every tree on our block! After the blood draw, we plan to put up the tree and string the lights. That will be enough for us for the day.

    Then, we need to decorate Jon's room with lights, ornaments and our family's stockings. We'll have to remove much of what is on his walls. That requires standing on a step stool, and it may become my job, as Jim's shoulders/arms hurt when he raises them up. I don't know where we will plug in lights for Jon, as he is already using full surge protectors for all of his equipment and TV/Blu Ray/Cable, etc. The electro-magnetic field in Jon's room must be enormous.

    We gave Jon a tree made of Sunflower stalks and flocked in gold glitter, which is about 14" tall and 7" wide:

    Screen Shot 2015-12-15 at 8.01.21 PM.jpg

    It sits on the shelf with the metal tree we gave him last year. Along with dozens of DVDs and Blu Rays.

    Just thinking about all of this is making me tired, and thinking about taking it all down and putting it away makes me more tired. I am really feeling my age, plus at least 10, perhaps 15 years, if you add in 46 years of life and death stress.

    I may not do this next year. Perhaps we'll get a cottage at the beach and drink smoothies all day ~

    If only we could ...

    That's my story. And I'm sticking to it.

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

    Love & Light,

    Rose
    Mom to Jon, 48, (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.

  10. #20
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    Default OUR UPDATE ~ Weds. 12/16

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

    Jon didn't fall asleep until 3 a.m., so at 8:30 this morning, I called his nurse to tell her that Jon was still sleeping. She offered to come out tomorrow to do the draw, or if Jon woke up within the hour, she would come then.

    At 9:00, Jon was awake, and I called his nurse, who arrived about 9:30. Jon was so happy to see her, even though he realized she was there for a reason involving poking him somewhere. He was all smiles all the time. Didn't even blink when she stuck him, got the blood first stick. Awesome.

    She told us that she was going to have a conversation with the lab folks, who know and like her, about messing up Jon's D & D levels. They don't live in the real world, where blood draws on some people is a trauma or extremely difficult to do.

    And this was her day off! She took time out of her own personal day off to do this for Jon. She is quite wonderful and a great nurse.

    We used the doc's lab account, and the results were posted on Jon's portal page! Yay! Jon's Dilantin level is 18.3, and his normal therapeutic range is 11-13. So he is toxic, and now we will adjust his dosages down to bring him to his normal level. Depakote is in Jon's normal range of 32-36.

    Jon's doc emailed me through the portal and said:

    1. Jon's Dilantin is fine

    2. Jon's Depakote is too low, so you might want to adjust that.

    And I replied:

    1. Jon's Dilantin level is toxic. His normal range is 11-13. We will adjust the dosages.

    2. Jon's Depakote level is normal for him, even though it is below the low range of 50-100. We will continue the dosages we are using now.

    He's a family doc, not a neuro (although a neuro would say the same thing, no doubt), and it's fine that he doesn't remember the dozens of times I've written to him about Jon's therapeutic levels. We know what we need to do.

    Jon is so tired, and his eyes are bloodshot, like he's been on a bender. And I just gave him his seizure meds. It's hard to pour more of this stuff down him, when he's already over his limit, but if I don't, we risk a life threatening seizure. I always know which devil I have to fight ~ the seizure.

    Jim and I didn't put up the tree or decorate today. We're just plum tired. Maybe tomorrow.

    Happy, Healthy Holiday Cheer To All!

    Love & Light,

    Rose
    Mom to Jon, 48, (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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