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Thread: CN Central Check In

  1. #1
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Smile CN Central Check In

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

    Okay. It's been too quiet here at CN. So, I'm sending out an APB to everyone to check in here with an update. Doesn't have to be long or detailed. But can be as long and as detailed as you desire!

    Here's our update:

    Jon is rocking his vitals, in good spirits and generally healthy. Still withholding urine and voiding huge amounts, but with no evidence of infection. Bowels are moving daily via colostomy. Anal leakage has subsided for now.

    We're still doing therapy twice a day, and using pillows and Poseys. His feet and legs look wonderful; his torso is slowly improving. We haven't met with his PT for several weeks. I text PT, and we discuss whether he needs to visit. At this point, he's agreeing that we keep doing what we are doing until Jon plateaus. Then, we'll change things up a bit.

    Moving the TV dilemma remains unresolved.

    Our current concern is whether it is safe and advisable to irrigate Jon's catheter every night, before we turn out the lights at bedtime. Usually midnight. If he doesn't void prior to bedding down, then he has a restless night. We irrigated him last night at midnight. He voided 400 cc, and he slept soundly for 12 hours, until a pee woke him up. It must be the urgency and volume, which disturbs him.

    That concern centers on two things: 1) irrigation can be a source of infection, although we've done it so many times, and we are so extremely careful with alcohol wipes, sterile syringe and sterile water; 2) the bladder may become trained to only void, when it has an irrigation.

    Jon's nurse will visit on Friday for Jon's catheter change, and we will discuss this concern then.

    In my mind, I have been going here as often as possible:



    Now, it's your turn!

    Check in at CN Central!



    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.

  2. #2
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Question Your Update Is Next!

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

    Really? No one is checking in at CN?

    Well ... hmmm ... I'm here, and I'll keep the light on for you.

    And while I'm here, I might as well update on what I learned this morning from Jon's nurse. She called to discuss the day and time for her to visit to change Jon's catheter. She has an IV infusion patient on Friday, who will take most of her day. So we might switch to Thursday.

    She and Jon's other excellent nurse discussed the change in Jon's urination. They both agree that it is likely related to Jon's enlarged prostate. Perhaps it has grown in size or moved, thus impeding urine flow. What can we do about that? Nothing.

    I asked her opinion regarding irrigating his catheter to stimulate urination, particularly at bed time, and she said, "I would." She said that the bladder won't be trained to only empty, after an irrigation. She said that an irrigation is better than holding urine for 12 hours. And, she stated that holding urine can lead to infection, when I asked about the risk of infection with irrigation. She observed, "How many times have you and Jim irrigated Jon's catheter? Hundreds! And he hasn't had an infection once. You keep it clean. It's better that he gets the urine out."

    Last night, Jon had gone about 10 hours without a pee, so when I woke Jim up to join me in preparing Jon for bedding down, and Jim to take over his shift, so I could sleep, we decided to give Jon an irrigation. Ah, but there was no need! In just those few minutes, Jon voided 400 cc. And he slept well, until a 700 cc void woke him this morning.

    We have a saying now: "Make it rain, Jon."

    This comes from a recent movie with Denzel Washington, whose character says those words in the trailer, as cars explode behind him. I am a huge Denzel fan, but I can't watch the violent movies. I've only seen the trailer quite a few times, with that line in it, as has Jon, of course.

    So, when I'm on Pee Watch for hours, I continually check Jon's catheter and output, and I instruct him to: Make It Rain!

    Jon chortles and looks at me, as if to say, "Like I have control over it." But he's so happy when he does Make It Rain, and we praise his accomplishment.

    Whenever you all do drop by, I hope that you will just check in, even for a sentence or two. And, if I'm not here at that time, I can possibly be found here:



    Or hovering over Jon's catheter, praying for rain.

    Thinking of and praying for 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.

  3. #3
    Distinguished Community Member andromeda31's Avatar
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    Hi!

    Glad Jon is doing ok! It's been busy here, though when is it not that way?! We had that heart appointment on Tuesday, well, on Wednesday at 5pm, I got a call. It said 'unknown caller, unknown number'. Now typically, I would never pick that up and answer it, but I had a feeling. Glad I did! It was the cardiologist. She was just finishing Brandon's report and wanted to call me and tell me...his ascending aorta is at the 99th percentile (not good). She asked which sports did he play? I said cross country (running) and wrestling. :( She said, oh cross country is ok, but wrestling...(a little bit of silence)...it's easier to steer them away from that when the younger they are. Also football is a bad choice. I then asked which sports would be ok. She said baseball, basketball. She said wrestling would be ok now if it is just for fun, but at the high school level it would be out because of the intensity and weightlifting required. It increases the pressures too much and will cause that aorta to stretch and get bigger which could be risky. She is concerned there may be a connective tissue disorder and set a referral to a genetic doctor there in Milwaukee. Brian is still wrapping his head around the wrestling not being good....Brandon loves it and our high school has a strong wrestling program. He even did a wrestling camp this summer. I said to Brian that if he wanted to ask the doctor himself he could...so I had him type up his list of questions and I hooked Brandon onto my 'mychart' electronic account there so I could e-message his doctor. I also called central scheduling and made an appointment with the geneticist...their first opening was the end of February 2015!! OMG! I took it though. I then thought, hmmmm, maybe I should check in Madison if we could get in sooner. I ended up doing one better! Madison has a geneticist that specializes in connective tissue stuff that comes up to our local hospital...yay! And the lady I spoke on the phone with in Madison said she just talked to the lady here that does the scheduling for him and that there is possibly openings in November. So I left a msg for the local lady and she called back when I was out and left a msg that we should be able to get him in before the end of the year. I am double glad at that since he just has our regular insurance...not like Caitlin where the state picks up what our regular does not pay for. We are almost to our 'max family out of pocket deductible' for the year and after that everything gets paid 100%! So all those likely expensive appointments for him would be totally covered. And I will be glad to only have to drive 15 minutes down the road and not waste a whole day going across the state. I don't like him to miss school.

    Brian has his first court stuff next week. Not sure how that works yet, I have never gone to court for anything ever yet in my life. He is maintaining his sobriety...wish I knew about those little breathalyzer things before all this. I would have had one in each vehicle! I never drink but just in case...oh well. I still get mad when I think about the money wasted on this happening. We could have bought Caitlin a new wheelchair. :(

    I sent the wheelchair lady an email...2 Mondays ago. I even asked a question so she would have to reply. Have not heard anything. This is just unbelievable! My dad suggested that maybe I should stop there in person....I was like, "I already tried that!" If it were not affecting Caitlin so badly to sit in the crappy old chair (which will be 7 years old this winter) it might be funny all this runaround. They are on my phone call list for tomorrow.

    We did do some fun things! Caitlin had a field trip to the Little Farmer last week (an awesome apple orchard with lots of other stuff to do), they even took her along on the hayride, she rode on her aide's lap and got to pick out a small pumpkin and brought home a caramel apple. Brian & I took all the kids to Pumpkinfest at the local grocery store on Saturday. They have cheap pumpkins (1.99 each!) and tons of them. It is crazy. They have it every year. He also bought a bunch of squash and is cooking it up right now as I am typing. He bakes it all in the oven and mashes it all up in a big bowl and then we freeze it in portions to pull out for dinner the rest of the year. It smells so good in here right now! They also have a wheel to spin for prizes and a big jumpy. Brandon was sad since he was too big to go in the jumpy this year, lol! We went early (9am) and it was still crazy busy! The bagger guy said yesterday they had 5000 pumpkins and were sold out by 2pm (I go to this store a lot and they all know me). Sunday, we went to my parents for a pizza birthday lunch and cake for my dad's birthday....65! I skipped the gym all last week, been battling a cold germ the boys brought home for me (and Caitlin also caught it). Felt good to go back to bodyflow (yoga/stretching) today and just relax and breathe. Well, gotta go make room in the fridge for the squash to cool off....

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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  5. #4
    Distinguished Community Member andromeda31's Avatar
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    Hi!

    A quick daytime update...cardiologist called me on the phone today to answer our questions which was nice. Wrestling is fine for the next few years with the understanding that he may not be able to do it in high school. Sounds good to us. No weight lifting restrictions except for no bench pressing. Not sure they do that in 6th grade so no worries there. Also may be able to get in with the geneticist at the local hospital (he comes up from Madison 1x/month) on this Friday! Unreal! Only if the lady is able to get the records in time though, if not, we will be seen in December, still better than next year though! Uh oh, boys are home, and fighting....

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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  7. #5
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    Hi Everyone!
    Glad to hear that Jon is doing fine and that Caitlin had a great day out on the farm and that Lisa, you got a workout in at the gym! I'm concerned about the aorta diagnosis, but it's good to know rather than not know - at least you can tailor Brandon's life around it. Did they mention Marfan again? All is well around here. Nick is doing well - he's writing his sports blogs and enjoying the beautiful fall weather we've been having. I had a long visit yesterday and he was having increased pain the night before and during the day yesterday. He needed the naproxen PRN, I hope it's not going to be trend. I've been really busy working on a health restructuring committee for the government - I'm enjoying it, but it's a lot of reading and research, trying to find the root points of possible change in order to recommend a few transformational policies that could help families with care needs cradle to grave. Here's a TED talk I found today that basically says what we all need - Health Anywhere, Health Networking and Health Customization are the main ideas. I really love imagining how we can change society to just make taking care of our families much easier. Right now it's too hard. Anyway, getting some time today and tomorrow at our cottage in the mountains with my husband - just us. It's lovely and quiet! Oct 8-9 is Canadian Thanksgiving and Natalie is coming home! Hooray - Sending love to all my CN friends, Donna xoxo
    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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  9. #6
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    ((((((Lisa)))))) ~

    I'm sorry to hear about Brandon's test results. Is there any treatment for an ascending aorta?

    As Donna said, it is better to know that not to know, especially where athletics are concerned. Jim and I recently watched a documentary on brain damage from concussions occurring in football, soccer, and hockey. It is unbelievably common. So, it's just as well that Brandon can't play football.

    Has Brandon contemplated other sports? How about swimming? Water Polo? How about golf? Tennis? And has he ever shown an interest in martial arts, like Aikido, or Tae Kwon Do?

    How fortuitous that a geneticist specializing in connective tissue disorders visits your local hospital! The stars aligned for you! Good sleuthing, my friend, to find this blessing! High Five! or Fist Bump! or whatever it is folks do these days to celebrate!

    When you call the wheelchair people tomorrow, I suggest that you emphasize that Caitlin is SUFFERING and DECLINING from lack of proper seating. I know that you abhor conflict, Lisa, but these people need a good reaming. What is their excuse for not delivering that chair to Caitlin?

    Can you report this vendor to some agency or insurance company or advocacy group? Is there some avenue to file a complaint against them? Perhaps you can investigate that, and either threaten them with some action if they don't deliver Caitlin's chair this month, by X date, and see if that lights a fire under them, or you can keep that close to your vest and just proceed with the complaint.

    Is there any chance that Caitlin's doctor (or assistant) could contact the w/c vendor and express concern that Caitlin is suffering without having that chair? It just seems like some pressure has to come to bear against this vendor for dillying and dallying all of this time, while your beautiful girl is uncomfortable.

    This just frosts my cupcakes! I remember the outrageous hassle we endured every time we attempted to get a new chair for Michael and Jon. Three of Jon's old chairs sit in our garage. I had to fight for each one of them, and by the time he got them, he'd changed enough to need modifications. It's simply obscene that Caitlin and my boys, and all of our kids, have to go through this to obtain proper seating in a chair that we, their care givers, can manage.

    These are wheelchairs, for crying out loud! They aren't constructing a space shuttle!

    I'm all fired up now, so if you want to send me the phone number of the wheelchair vendor, I would be more than happy to contact them on your behalf.

    Good news that Brian is maintaining his sobriety. I'm glad that he weighed in with his questions regarding Brandon's diagnosis too.

    Your anger with Brian is certainly understandable and justified. It's all still fresh and raw and impacting your daily lives. If you haven't had a chance to do some research on alcoholism, I encourage you to do so when you feel ready. It is a complex disease, with a hereditary propensity.

    I remember your visit to the apple orchard from last year (yes? did you go there last year?). And the Pumpkinfest sounds fun. Squash cooked and frozen. Yum. A great way to welcome Autumn.

    Keep up the yoga and stretching, Lisa. Very good for you in every way.

    Prayers continuing ~

    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. #7
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    Sorry for my lack of activity here. I am busy with many responsibilities, the major one being the post production of my latest film which I posted about here http://cripvideoproductions.tumblr.c...editing-begins
    I have school stuff which is hard and family and friend issues(can't go into detail for privacy sorry) My overloaded schedule means that some of my physical therapy/meditation/yoga type stuff I do is on hold to some degree. I have spastic CP so my body is getting tighter as it gets colder here so its bad timing but I will work it out as I am fully committed to keeping my body healthy.

    I am sorry for Brandon's heart issues Lisa. Sounds scary but I hope for the very best.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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  12. #8
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    ((((((Donna)))))) ~

    I'm happy to hear that Nick is doing well and writing, but I'm sorry to hear of his elevated pain levels. Is medical marijuana in some form legal in Canada? What are your thoughts about MMJ to help with pain control and/or seizure control for Nick?

    Let me once again thank you and applaud you for your continuing advocacy and activism, and for your always forward thinking approach to issues involving all of humanity. I am not seeing the link to the TED talk you mention. ? But I'd love to watch it.

    I can only imagine how beautiful the mountains and lake are this time of year. I'm sure that you're enjoying your escape to that paradise.

    Natalie is coming home for Thanksgiving! YAY! I'm sure you will prepare a scrumptious meal for that special occasion!

    Thanks for checking in!

    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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    Great to read all the updates.

    Rose, Glad all vitals are good. I hope the nurse can answer some questions tomorrow. I'm a big Denzel Washington fan too. I love your phrase "make it rain" I may just use that when catheterizing Kathleen I'm sure I'll get quite a laugh. Keep us posted about your visit with the nurse.

    Donna, That's wonderful that Natalie is visiting soon I hope you have a great Holiday together. Praying that Nick's pain gets under control.

    Lisa, Sorry to hear aboiut the heart diagnosis but at least you can monitor it... That's just awful that you've been waiting so long for the WC. The farm visit sounds awesome!

    Funnylegs, Glad to hear that your keeping your body healthy. Kathleen's heel cord is still very tight and I know how difficult it can be to keep it stretched.

    Our update... Kathleen is doing quite well in general. She's making it to school almost everyday. I think she only missed 2 days. One was today. She was almost out the door and she sat on the floor because her right leg got "itchy" Her eyes were bothering her when she woke up but that went away. Then her left leg was "tight and tired" so back to bed she went. She's been wearing her neck brace a few hours a day which is pretty good. She's only had 2 episodes of itchy or burning. Not sure if the brace is whats making the difference. Even with 5 PT a week her heel cord is still very tight. She ells me once in a while it feels tight even. She's coming home pretty early from school still. She tires especially her legs. She sees the orthopedic Dr. next Friday. The fall weather has been awesome (maybe a little too warm some days) but the colors are just amazing and the Apples are fantastic. I can't keep enough applesauce or applecrisp made for everyone.
    Mary Grace

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  15. #10
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    Hi Mary Grace, I'm so sorry that Kathleen continues to have problems with itchiness and tightness. She is one mysterious girl - I'm sure by 2045, they will have an answer for all her symptoms and Nick's too - wouldn't that be a miracle! I love fall too. Tonight I made a pork roast with applesauce, white wine (a bit in the bottom of the roasting pan), garlic and a gravy made of just whipping cream in the pan with the drippings. I'm sure it was very bad for our cholesterol but it sure was good! Chatted with Nick this morning and he sounded good - very happy to be going out shopping today and excited that his sister is coming home this weekend! We skyped with Natalie (Nick's sister) this evening and she put in her orders for her fav. foods when she visits and told us about an exhibition at Ellis island that she is going to study for her masters thesis. All is well. Nick's pain from last week seems to be better - it comes and goes for no reason that we understand. Take care, Mary Grace and hugs to you and Kathleen! 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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