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    Our Best Christmas Gifts

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

    Today, Jon’s nurse visited to change Jon’s catheter. The special cath we were hoping to use wasn’t delivered. It is called Coude, and it has a curved tip to assist with insertion for men with enlarged prostates. So, we went with the cath Jon’s been using for the past several years.

    As we have for the last 3 cath changes, we labored over the length of the catheter post insertion. It was the same length as it has been, and we had no return once it was inserted. She very slowly and gently began guiding the cath further into Jon’s urethra, and bingo! Urine started to flow!

    “I felt it!” she exclaimed, describing an extra bump in the road that she discovered today. “I know where it is now, and how to get over it!”

    Before, Jon’s cath was 10 mm from his penis to the connection to the drain bag. It is now 3 mm.

    And he is peeing! Oh, yes! He is peeing continuously! And we are rejoicing!

    No trauma, no blood, just wonderful, glorious pee!

    If this is the answer, then we have struck gold!

    The stress relief for Jim and me is tremendous. Counting the hours since his last pee, irrigating him with no return, then worrying what that meant, his low SATS and high heart rate, when he wasn’t peeing often enough or with the largest quantity. His episodes of gagging, choking, and vomiting. Peeing over his cath ~ the linen and gown changes, the extra laundry. Our relentless efforts to mitigate everything that was happening to him. The frustration of not knowing why this was happening to him.

    And most importantly we worried about Jon’s discomfort voiding 1000 ccs at one time. His hard bladder and swollen belly. His constipation. And loss of sleep, because he was awakened at 4 a.m. by a pee and couldn't return to sleep. This stuff is like a map to Things Going South.

    So far, on our journey tonight, we’re traveling North. It’s amazing!

    In addition to this wondrous feat, all of Jon’s supplies will now be coming from the nursing agency! I am finally rid of the incompetent suppliers! That only took me a full year to accomplish. Now, instead of waiting 2 weeks for a trache, which “is coming from another state” as the last supplier told me, to which I replied, “Yes? And? Fed Ex, UPS, the Post Office, etc. all deliver overnight,” we will now actually get his traches overnight. Like we do the rest of Jon’s supplies from the nursing agency, because we have a good friend in the supply department, who loves Jon.

    More stress relief! I am singing Hallelujah!

    And this morning was my second day of taking my neighborhood walk. Very short distances and close to home, wearing my knee brace, and keeping my eyes on the ground for obstacles. I even stopped to pick tangerines for Jon’s nurse. I am so extremely grateful that I am able to do this only a month after my injury. An angel is surely on my shoulder. I feel Michael surrounding me with his positive energy, love and light. He guides me through our most difficult challenges. I feel incredibly blessed.

    How delightful it is to share good news! May this be the beginning of a pattern for all of us!

    HAPPY HEALTHY HOLIDAYS!

    As always, sending healing prayers and love to all ~

    Love & Light,

    Rose
    Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

    #2
    Hi!

    That is great news! :) I am so glad you can relax and have a peaceful holiday now!! I am doing a happy dance for you & Jim & Jon!!! :)

    I am hoping to have some good news too...I called on the wheelchair on Thursday (my every other week call!) and they said it was due to ship from the manufacturer on Friday and that they already have the backrest (from a different place). When they get the chair, it will need to be assembled and then they will deliver it. If I don't hear from them by Wednesday afternoon, I am planning to call since Caitlin has a field trip with her class on Friday...they are going to the Mall to see Santa and have lunch so she will be sitting in her chair all day. I sure hope it will be the new chair! Fingers crossed!

    I agree that I sure hope this is all the beginning of good things for all of us here on CN!! ((((hugs))))

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

    Comment


      #3
      ((((((Lisa)))))) ~

      Praying for Caitlin's chair to be delivered well before Friday! She needs to be comfortable for Santa!

      On social media, like Twitter, I hear the word "trending." Well, I think positive and wonderful things need to start trending here on CN and BT!

      Now that Jon has kicked off the season with his miraculous recovery (and yes, he's still peeing continuously!), let the trending begin!

      Team Caitlin's Chair before Friday!



      Love & Light,

      Rose
      Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

      Comment


        #4
        Lovely that we are in the season for miracles. Seeing them all around me here. So glad to hear Jon is having healthy pees. Funny how the little things bless us. Be careful with your leg Rose. My husband took a fall last week and cracked a rib and chipped a bone in his right elbow. Looks like Popeye right now. Falls are no laughing matter for people our age.

        Praying Caitlins chair gets delivered this week. She needs to be comfortable. Hope she has a wonderful time on her field trip.
        grandmother of Tyler (27): 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."

        Comment


          #5
          That is truly a gift! What fantastic news!

          Good luck with the chair Lisa! Hope it comes!
          Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
          My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

          Comment


            #6
            Hi!

            Called the vendor today....they are delivering it tomorrow!!! I am so relieved! I didn't want her to sit in her current chair all day on her field trip. She could barely sit in it for an hour tonight without slumping to the side. We had advent dinner & service at church and the older 2 boys are required to go for their religion class. It was really nice though, pretty with all the lights dim and the Christmas tree all lit up. And I was in a good mood knowing the chair is on the way! :) I have to pull her out of school early since the rep only had one time slot open between her 1pm and 4pm appointments but I didn't care, I said I would make it work! And that isn't too bad anyway, I only have to pick her up about 40 min before school gets out anyway. I will definitely post a picture tomorrow!

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

            Comment


              #7
              Oh, what wonderful news, Rose!!! I am just absolutely thrilled for your whole family that Jon's catheter woes and urine retention just may be solved and that your supplies will now come through the nursing agency - AND that you're outside walking!!! Good things (as well as bad) come in three maybe? How fantastic, I'm so happy to hear great and happy news from your home - hurray and may it continue!!!!!
              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

              Comment


                #8
                Things Changed

                ((((((Lisa)))))) ~

                How wonderful! The chair is finally here! Can't wait to see the photos, and what a relief at last for Caitlin! YAY! Hope all went well with the fitting today and that Caitlin is super comfortable and properly supported.

                ((((((Donna)))))) ~

                Well, it hasn't been all blissful, unfortunately.

                Tuesday afternoon, Jon started bleeding. He has frank blood, followed by blood mixed with urine like strawberry lemonade, then clear pee, then clots, then frank blood, etc. Still going on today. We irrigated him yesterday with some positive results for a couple of hours (less blood), but it did return. Our only option is to irrigate him continuously, 200 cc saline at a time, attach a tube to cath, drain into a basin. Risk of infection is high. We had to do this a few years ago for several days; we were taught by the ER doc. He put Jon on an antibiotic as a prophylactic. We're hesitating to do this, because Jon does have periods of clear, bloodless urine. We are praying it subsides on its own.

                Jon's nurse is visiting tomorrow for Jon's re-certification for services. I have emailed her about the bleeding, so she will assess him tomorrow and advise us.

                Two concerns: Jon's anemia and chronically low hemoglobin, and potential infection.

                I guess the lesson here is to be careful what you wish for, because I would rather be dealing with urine retention than excessive bleeding. ... Sigh ...

                However, on a positive note, the supplies are rolling in! And I am increasing my walking distance daily without problems. Better be careful I don't jinx anything here, eh?! I may not be able to walk for a few days, as tomorrow, we're expecting heavy rains from a storm heading our way from the north. When you're in a 1200 year drought, rain sounds so good. Then the flooding and mudslides start, and it's back to "be careful what you wish for!"

                HUGS AND LOVE TO ALL ~

                Love & Light,

                Rose
                Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                Comment


                  #9
                  Hi!

                  It's here!! 004.jpg005.jpg003.jpg

                  She looks so much better in it! This is how she was in the old one: sitting.jpg

                  Brian was amazed how much better she looked. I didn't get to see her too much in it since it took almost 2 hours for the rep to get it all adjusted and by the time she left, I had to leave with Tyler & Logy for family night at their school. It was kindof funny....one of the screws in the armrest was stripped and h*ll if I was going to have to wait another day for this chair. First I got my own toolbag out and tried my own hex screwdriver, no luck. Then we both tried to hammer it out after breaking the armrest piece off (she was going to put different ones on that would work better with the new tray). No luck with the hammer. Well, in my fear of having to wait, I was like, well we have a vice in the garage? So we went out there and tried to hammer more, then I suggested a saw, so she ended up sawing the end of the screw off, lol! The new armpiece didn't require that hole so it just covered it up. Can you just picture this?! :)

                  What I really am going to like is how much lighter the new chair is. C has a 7am chiro appointment tomorrow....can't wait to see how easy it is to lift it into my van!! She has a doctor appointment in January so I will have to wait until then to get an actual weight for the chair but I am guessing it is 30 lbs lighter! The old one weighed 70 lbs. She is all set now to go visit Santa at the Mall!

                  Glad you are able to get back to walking Rose...hope the storms are not too bad and you don't lose power or have flooding!! I saw on the news this morning how they were talking about the rain y'all will be getting. Here everything is just icy and cold, but I did walk the dog for a quick 20 min around the block inbetween errands.

                  Happy Friday everyone!!

                  Lisa O.
                  Last edited by andromeda31; 12-11-2014, 07:15 PM.
                  sigpicLisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

                  Comment


                    #10
                    ((((((Lisa)))))) ~

                    Wow! Look at the difference!!! That is so fantastic!! I am thrilled for Caitlin! And for you!

                    I know about lifting heavy w/c's! I had a 1980 Toyota Corolla. Folded one chair, lifted it into the trunk, tied with a bungee cord. The other went into the back seat, standing on its side. And I was working outside of the home then, so I was usually wearing a business suit and high heels. Had the big hair too!

                    The lighter weight chairs are such a blessing! I'm so happy for both of you! Caitlin will be so much more comfortable! At Last! MERRY CHRISTMAS!

                    Based upon your efforts to fix the armrest, I'm thinking you could have built this chair yourself in a day! You sure are one resourceful woman!

                    I am less worried about the storms than I am about Jon's bleeding. And I'm worried about Jon's nurse driving in the storm tomorrow. It's not a good day to be a home health nurse, when flash flood warnings are being issued every 20 minutes. We live on a hillside, so we are generally not affected by flooding, unless our street drains are clogged with debris. We also thankfully don't live in a fire area, so mudslides are unlikely for us. Jim went to the store today, so we are stocked up on food; Jon has enough formula to last this month, and all of his meds are filled. We have a generator, although Jim will have to make it to a gas station to get gas to fill it up, but we have one within a mile of us down the hill, so that's not a worry.

                    We had two days of blessed rain two weeks ago, and the and TV weather casters bemoaned that the amount of rainfall wasn't enough to help our drought. Now we have downpours, flooding, mudslides, and all that goes with it. I guess none of us really knows how to deal with a 1200 year drought! Be careful what you ask for! I feel like shouting at the TV: "You want rain? Well, here's too much rain, now deal with the consequences!" Count your blessings, I say. At least our yard is looking greener and our plants are perking up a bit. And I'll bet the farmers are grateful for this rain!

                    No bleeding for 4 hours! And that included our turning Jon and changing his underpad after 2 days of not doing that. Just praying that this is it. I just finished giving him the spa treatment, and tomorrow, he will wear one of his new "shirts" for his nurse. We're planning on our nurse taking a family photo of us to send to our friends for Christmas.

                    May Caitlin enjoy her new chair and her visit with Santa tomorrow!

                    Love & Light,

                    Rose
                    Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

                    Comment


                      #11
                      Lisa, that chair was worth waiting for - it's just fabulous and I'm so glad that it's lighter!!!!

                      Rose, could the catheter insertion going over 'the bump' have just nicked or rubbed internally enough to cause this bleeding? So a small trauma to the tissue? If that's the case, it should heal quickly. That's what I will pray - that the bleeding will stop today. Then, I guess, you'll have to decide whether to risk positioning the catheter like that again, or to stick with the old way and cope with urine retention. Hmmm, it's always something. Prayers for no lowered haemoglobin and no infection!

                      xooxLove to all! 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

                      Comment

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