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Thread: What Is Next For Jonathan?

  1. #221
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    Thank you Kurt and thank you FedEx! I was so scared something would go wrong. I was afraid Kurt was too good to be true.
    Virginia

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  3. #222
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    Oh my goodness, Rose! I am just reading this horrendous saga now, sitting at the airport in Ottawa waiting to go to Dayton. Nick has the same mattress and we just had to replace it about 3 weeks ago when his old one started making the same noise and going constantly. I know your worry - a deflated mattress is our WORST nightmare, too! It's awful - we've been trying to figure out the new settings and the way this new model works. Nick is slowly getting used to it. The mattress is one of the most fundamental pieces of equipment in our kids' lives - their comfort and pain management completely depends on it. I am so so so happy that Kevin came to your rescue! God was watching over the Hacienda that is for sure and of course nothing would have happened without your amazing perseverance and imaginative advocacy, Rose! Well done sister!!!! xoxo 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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  5. #223
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    Happy Thanksgiving! So relieved you got the mattress pump replaced!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  7. #224
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    Unhappy And Then, The Mattress Broke!


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

    Thank you Marcie, Virginia, Donna and funnylegs4.

    Our euphoria over the pump was tempered last night. When we pulled Jon up in the bed, we heard a ďpop!Ē and a ďwhoosh.Ē We knew what it was, because this happened to the mattress a few years ago.

    The tubing on the right side of the mattress snapped, as in broke in two. We had it repaired, which took a couple of months, while we rented another mattress. I think that cost about $1k.

    As a result, that side of the mattress is somewhat deflated. But the rest of the mattress is fine.

    We do have the new mattress, which came with the pump. But getting Jon out of bed, into his recliner, so we can deflate and remove the old mattress and place and inflate the new one is the catch.

    We canít do this on our own. We need Johnís help. He was ready to come over this afternoon and help us. Then, Jonís belly began blowing up again. At one point, Jon coughed and gagged, and we knew it was too risky to try to turn him, let alone lift him. So, we cancelled John.

    John has a gathering of Thanksgiving guests coming at 11 a.m. tomorrow. And Friday, heís going to Del Mar race track with his buds (known since grade school!) to celebrate his 50th birthday. So, Saturday is the next available day to try to change the mattress.

    Odds may be that Jon will need that time to try to get this fluid out of him. I gave him MOM today to get his bowels moving. Iím sure thatís one problem. Another is that weíve decreased his formula intake. Thatís one reason why his urine output is low too. Weíre supplementing with water flushes, but heís missing nutrition.

    We also irrigated his catheter today, because heís putting out some really mucky stuff. Hoping that helps the flow.

    Jonís nurse visited today to do his Re-cert (every 2 months to justify the service). She said that weíre doing everything right, and she didnít really have any suggestions for us. Sheís taking a vacation with her husband, and their daughter and SIL from Friday to Weds. So, sheíll be out of contact then. Friday 11/30, she will visit to change Jonís catheter and trache.

    So, we fret, and we worry, but we try to keep a positive attitude. Weíre determined to have a Thanksgiving dinner and to celebrate the holiday giving thanks for our blessings. We got a pump. We got a mattress. We have John to help us. Weíre all still here. Blessings.

    And we give thanks for all of you, and we pray that you all have a lovely Thanksgiving.

    Love & Light,



    Rose
    Mom to Jon, 49, (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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  9. #225
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    I am so sorry Rose that all of you are going through this awful time. Even when things are at their baseline it is bad, but when stuff like this happens it just complicates everything even more. I hope all of you are able to have a good Thanksgiving in spite of all of this. With your indominable spirit, I am betting that you will.
    Virginia

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  11. #226
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    Call the non-emergency number for EMT's and see if they will help. After all, they come out to pick people off the floor, do welfare checks, etc.

    Take care.

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  13. #227
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    Callyflower, that’s a good idea. Two guys to lift would be great.

    I think that almost all my posts include “I’m sorry” and “I’m in awe of you” and so it is tonight.

    I wish you a good sleep, a pleasant walk and a blessed Thanksgiving.
    ANN
    There comes a time when silence is betrayal.- MLK

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  15. #228
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    ((((((Hugs to All)))))) ~

    Virginia ~

    It's been much worse for us than it is now. We've spent many holidays, including Christmas, in ICU. We treasure any holiday where we aren't calling paramedics or sitting bedside in ER/ICU. No matter where we are or what is happening, we always try to make it a good day.

    For example, Jon wanted an Elton John concert DVD today, so I sang along with Elton, and Jon and I danced. Oh, the smiles! And the hugs and smiles and "I love you" to his nurse today. Jon is absolutely awesome.

    callyflower ~

    So great to see you! How are you? Did you have the procedure? You're in my prayers.

    Thank you for your suggestion. EMTs is a good idea.

    However, Jon has a Liko lift with a full body sling with fake sheep's wool lining. We use the lift to carry Jon to his recliner. Jim and I used to do this on our own, but we can't any longer. That's why we need John's help. John will also untie the existing mattress and tie the new one, because Jim can't get on the floor and under the bed to do that now. That process will likely take an hour, and I doubt the EMTs would be able to help us that long. We've had some really caring EMTs, and some, who are not. You never know who will show up.

    In addition to the mattress change, we have to treat Jon's wounds. This is where we also need John's help.

    As Jon is right now, he can't be lifted or turned. We're hoping that this will resolve by Saturday. It takes awhile for MOM to work, and we should see results by tomorrow.

    Please let me know how you are. I've been worried about you.

    ANN ~

    I feel the same way about you, and all of the incredible people here on BT. We all have our challenges to confront and obstacles to overcome. The love, prayers, support and positive energy we receive from each other is strengthening and healing.

    Thank you for your sleep wishes. Jim just woke up from a 4 hour nap. I don't know about my walk tomorrow morning. Rain is expected tonight and tomorrow. I don't walk in the rain, because I fear slipping, falling, and breaking a hip. We need the rain, but I worry about the burn areas and mudslides.

    The Tofurky ham is in the fridge defrosting. Jim's raring to make his roasted potatoes. We have peas and carrots (the names given to the pardoned turkeys this year). And, I'm hoping to make pumpkin muffins.

    I'm so happy your endoscopy biopsies are normal. I pray that you will be able to enjoy your Thanksgiving feast tomorrow.

    Marcie ~

    I will be thinking of you Nick, Brian, Jon and your family tomorrow and holding you close to my heart. Many prayers that your are surrounded by peace and comfort.

    Donna ~

    By now you are in Dayton enjoying your visit with Natalie and her beau's family. I know you'll have a wonderful visit.

    You are so very right about beds and mattresses being of utmost importance to our boys. It's essential to pain and wound management. The same is true for us with the feeding pump and the suctioning machine.

    That's rather amazing that Nick had the same mattress system as Jon, and you experienced the same failure/sounds. Isn't it awful? The sound was just piercing. Then the smell. Speaking of smell ... the new mattress has an odor, so I'm going to persuade Jim to try to get it out of the box and onto the patio for off-gassing. We have a couple of days, before John and Jon will be ready for the big move.

    I want to hear all about your Thanksgiving American-style!

    Prayers for safe travels.

    funnylegs4 ~

    Happy Thanksgiving to you and your loved ones! And thank you for your enduring friendship and continuing prayers and support.

    Abundant Blessings to All ~

    Love & Light,



    Rose
    Mom to Jon, 49, (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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  17. #229
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    Well, my mom had EMT's come out for an hour with no transport when she had a nosebleed. They collected her from her home after a fall in an ice storm and provided transport to ER. A few days before my father took his life they did a welfare check, complete physical check over and did an EKG. No transport, as he refused. I've seen them do similar with my patients.

    If you call and ask them to get a good team (2 or 3 people) together and come at their convenience, I'll bet they will. They have "people moving devices" that can help as well.

    I canceled my last procedure. My second opinion doc agreed with me that now is not the time. Now dealing with a bunion that is really cramping my style. It's always something.

    Hope you have a peaceful holiday.

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  19. #230
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    Smile Happy Thanksgiving!


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

    I hope that everyone has enjoyed a beautiful Thanksgiving.

    callyflower ~

    What a relief it must be for you to defer the procedure. I pray that you will never need it.

    What can be done for a bunion? I canít imagine that pain. Iíve had plantar fascitis and now have an ingrown toenail. So far, no bunions. I hope you can get it healed soon.

    Thatís great that your parents received good care and attention from EMTs. Iím so very sorry you lost your father.

    It sounds as though their medical issues, which brought the EMTs, involved potential transport. Jonís situation will not require transport.

    We live in a highly populated metropolis, and our EMTs are pushed to the limit. We just passed a proposition statewide to give EMTs breaks for food and rest, because the ambulance companies were overextending them.

    In the 40+ years weíve lived here, I canít count the number of times the paramedics and EMTs have come to our home. Even for non-emergency transport, like to the ER for an xray or to the doctorís office, itís obvious that the EMTs are overworked. They often work 12 hour shifts.

    Weíve had EMTs arrive, who had just been awakened from their rest period or were finishing their meal on the way to our home. When they get to their destination, they give report, and then theyíre gone. We have to call another transport, when itís time to leave. And we wait for them, sometimes for hours.

    Jonís mattress replacement must be done, when Jon is able to be moved without vomiting. Until we get this fluid under control, that isnít going to happen.

    And given Jonís and Jimís current sleeping situations, we canít do anything at the convenience of others. We schedule everything around them.

    Another consideration is cost. Iím sure that Medi-Cal wonít pay for EMTs to spend an hour or more at our home to lift Jon and replace our mattress. I am absolutely sure of this. I canít imagine what the ambulance company would charge. We just spent nearly $4k on the pump and mattress, and we canít really afford more at this point.

    I think that John, Jim and I will be able to manage transferring Jon with his amazing lift:

    https://www.hill-rom.com/usa/Product...ifts/Viking-M/

    Thankfully, the mattress is functioning fairly well, with alternating pressure but at full blast. We usually have Jon on 5, but now itís 9. We havenít been able to turn him at all, and when we lay him flat to pull him up, we have to be very speedy. When we sit him up, his belly starts expanding.

    Jim and I agreed that Jonís exhibiting signs of overmedication. Heís constipated, possibly because heís holding the Dilantin. So, we will reduce his a.m. and late night doses, while maintaining the seizure dose in the evening. I had to give him MOM again today. We have to get those bowels moving soon.

    Meanwhile, I made pumpkin muffins today with gluten free Simple Mills mix. I substituted flax seed ďeggsĒ for real eggs. Theyíre edible, but not what I expected. It made the house smell like Thanksgiving, which was my main goal.

    The Tofurky ham is in the oven, and Jim has par-boiled the potatoes for roasting.

    We watched the parade and some football. We also watched the Westminster Dog Show. We miss our cocker spaniel, but we know that we canít manage having a pet any longer.

    Weíre together. Thatís everything to us.

    Happy Thanksgiving to All and Abundant Blessings Upon You and Your Loved Ones!

    Love & Light,



    Rose

    Mom to Jon, 49, (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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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