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Thread: What Is Next For Jonathan?

  1. #211
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    Hi Rose and everyone,
    I'm so sorry to hear of Jon's pain. It's a hard hard time in your house, Rose. I pray for you and the guys every day - I've been trying to think of any assistive devices that might make turning easier on Jon and for you, too. I know you tried ordering some straps and they didn't work, right? I wish there was something! It's amazing that you met an RT from your hospital - it's such an amazing world, eh? My friend here in Ottawa is a bereaved Mom of a young man who was very complex. She is driving for Uber now and meets people all the time who turn out to have had something in common with her late son or with life as a complex care parent. The world sure is small! I'm so glad that the branded Dilantin is sorted out now, phew and finally - one less thing to worry about. Jim and I leave for Dayton on Wednesday morning - we'll have Thanksgiving with Natalie's boyfriend's family down there. It will be fun and I can't wait to see Natalie! Nicholas is happy these days because we got him the new Ipad to replace his old laptop and old Ipad. The new device replaced both of the old ones. I can't believe how quickly technology changes. I send you love and a very gentle hug to all, 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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  3. #212

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    How’s Jon doing today? I hope that his pain is better.

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  5. #213
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    ((((((Hugs to All)))))) ~

    Thank you ANN, Mary Grace, Donna, and Marcie ~

    Jon is still struggling with an overload of fluid and air, congestion from that, as well as leg pain. He's also very lethargic and drowsy, probably from holding in his increased meds to stop the seizures. We are still adjusting his formula feeding rate, based upon his output and the status of his belly. He hasn't had his full 1500 calories/day for several days.

    I camp out in his room every night, in the dark, basin in one hand, suctioning in the other, constantly checking his vitals and venting his G tube. (I have 8 hands! )

    He was asleep, when I went to bed at 2:30 this morning, but at 2:45, he was awake, and Jim suctioned him. At 5:30, Jim returned to his nest for some sleep. I was awake at 6:30.

    We just keep doing what we're doing, what we always do in these situations, and pray for the best outcome. Even in the hospital, doctors would be reluctant to give him Lasix. The fact that he's immobile doesn't help anything.

    ANN ~
    Your love, prayers and concern for us are a blessing. I know that you'd love to provide us with your professional guidance, but Jon is so complicated, no one knows what to do for him. Our GI, who is a fantastic physician, just shakes his head. Our now retired pulmo told Jim that lymphedema is something we'd be "chasing forever." Our PT's valiant efforts to help Jon probably work for other patients, but Jon is so unique to other people.

    I know you can understand this too, given your current medical issues. It's so wonderful that everything has been ruled out for you, but now what? It's not like, "You have X. Here's what we do for that. You'll be fine." Your situation is confounding.

    I send you lots of healing prayers and an increased ability to tolerate food. Plus extra hugs for Peter and your kitties.

    Mary Grace ~

    I hope you enjoy Thanksgiving as a respite from the work you usually do for the holiday. I used to love to cook for the holidays (well, for every day), but now, I'd be thankful for someone else to cook. Enjoy the break and the new tradition for the young folks! It's probably exciting for them to be hosting.

    Yes, I watch the Macy's parade every single year. Usually alone, as neither Jim, nor Jon nowadays like to watch it. I love the Broadway show segments.

    I plan to order from Instacart tomorrow, because every day thereafter will be chaotic. We just need basic stuff, not necessarily food for Thanksgiving.

    Thank you so much for your prayers, and please know that ours continue for you and your family. Always happy to see photos, too!

    Donna ~

    I'm so excited for you and Jim to be with Natalie for Thanksgiving! Is this the first time you've met her beau's family? Prayers for good weather and safe travels.

    Nick got an early Christmas present or a late Birthday present? Either way, I'm so glad that he is feeling well and didn't catch the virus that was going around.

    Thank you for your love and prayers ~ right back at you!

    Marcie ~

    Thank you for faithfully checking in on us. I know your plate is full, and you are so sweet to think of us. Please know that you and Nick, Brian, Jon and your family are always in our prayers.

    Wishing everyone a Healthy, Happy 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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  7. #214
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    Post The Mattress Pump Saga

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

    The pump on Jon’s low air loss alternating pressure mattress is going funky. It’s emitting a squeaky, whirring sound, which became louder and louder during the night.

    I monitored it last night, as Jon slept peacefully after falling asleep at 11:30 p.m. What a blessing that he was sleeping. What a fear that his pump would fail. So, no relaxing for me. Or for Jim, who relieved me at 3 a.m.

    Jim tried everything he could conjure to get it to stop squealing. He managed to get it to be a bit quieter this afternoon.

    At 8:30 a.m., I was on the phone calling the company, from which we purchased the mattress/pump, as well as other mattresses and paid for service on Jon’s Liko lift. We rented a loaner bed from them, when his bed broke. They repaired his mattress, while we rented a loaner mattress from them a few years ago. The company was local and responded quickly to our calls.

    However, I learned today that this company was swallowed up by a larger company headquartered in New Hampshire. They don’t exist any longer in our area.

    OVER 20 PHONE CALLS

    Thus began 4 hours of non stop phone calls. I spoke to four different people at the New Hampshire company. They finally told me that they wouldn’t sell to me, because I am not a facility!

    I called Invacare (manufacturer of the mattress) and 8 local suppliers on Invacare’s website. I called 2 places recommended by Invacare. I called two sales reps (one in Northern California one in San Diego) and left messages. I even called Apria.

    The Micro Aire 85, which Jon has, is on back order until Dec. 3!!!!!!!!!! And none of these places had it in stock.

    Some had the Micro Aire 65, but that likely wouldn’t work with Jon’s mattress. One place wanted to charge $3k for the pump and $7k for the 65 model. Talk about gouging! And I explained Jon’s condition and desperate need for his mattress, so they were taking advantage of our crisis. At Thanksgiving, no less!

    One place said they’d rent the 65 mattress and pump to us, but the gal, with whom I spoke, said she’d have to investigate it. She called later with a message that the person, who could handle the rental, wasn’t in.

    KURT, THE HERO IN WASHINGTON!

    Last night, I found the 85 pump/mattress on Amazon. But the earliest delivery date was Mon. 11/26. We can’t wait that long, because Jon’s pump is bound to quit sooner rather than later. I decided to call the company listed as the seller: Cascade Health Care Solutions in Washington state.

    A very nice man named Kurt answered and came to our rescue. Yes, they have the 85 in stock, except the mattress isn’t flat. It has bolsters on the side. We have that mattress, but the bolsters didn’t work well for turning Jon. Nonetheless, they can be removed. Right now, it’s the pump we need.

    Kurt told me that the warehouse is here in Southern California and that he can have it delivered tomorrow!!! Thankfully, the warehouse isn’t located in a burn area.

    Next day delivery is $150, but he said, “I’m going to waive that for you to help you out.” At this point, I was fighting tears thanking him. The total for both the pump and mattress is $3,656. A lot cheaper than $10k for the mattress we didn’t want!

    As I began to sob softly, I said, “Thank you so much and God Bless You, Kurt. Happy Thanksgiving! I give thanks for you!”

    He responded, “You’re very welcome. Bless you and your son, and I hope you have a Happy Thanksgiving now with the new pump.”

    When I told Jim that we were getting the pump, I just burst into tears. I ache all over right now from the stress of this situation. Jim does too.

    PUMP PRAYERS

    Now, we pray that the pump holds out until the new one arrives tomorrow.

    Here’s what happens if the pump fails and the bed deflates: It’s more difficult to turn Jon to get him out of the bed using his lift and sling. We’d need John’s help for certain. We’d have to bring Jon’s recliner into his room and put him on it. Given his current status with leg/knee pain, this would be very painful for Jon. Then, we’d have to repeat all of this to put him back in bed, when the pump is here.

    That’s why I wanted a pump TODAY!

    But we have another night and day of hovering and fretting and praying.

    Please join us in prayer that the pump lasts. Thank you all so much!

    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. #215
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    Rose, to sleep perchance to dream?

    God bless Kurt!

    Such a lot of worry. I do not know how you do it. God bless you and Jim and Jon. And John. Do you know any men that are not in the J-K part of the alphabet?

    ANN
    There comes a time when silence is betrayal.- MLK

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  11. #216
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    ((((((ANN)))))) ~

    Of course! Michael!

    Come to think of it ... Jon's PT is Jeff. Jim's Dr. is Dr. K. My uncle with Alzheimer's, who is more like my brother, is also named Jim!

    Two of our dear friends are named Steve. How'd they get in there?!

    I don't know how I do it either. Jim patted my arm today and said, "You persevere!" Yep. Have to. Jon has to have a mattress and a pump! No alternatives there.

    Jim is making dinner, and then we have to pull Jon up in bed. Sure hope that goes okay, and the pump keeps pumping. We had to cancel John's visit today, because the risk of the pump failing with turns just seemed too great.

    Thank you for your blessings. And many blessings upon you and Peter and your kitties.

    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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  13. #217
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    Angry Pump Broke!!!

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

    The pump konked out about a half hour ago. I think we pushed it to its limit, when we pulled up Jon in the bed and cranked it to level 9 on static.

    Jim says that it would be more harmful to Jon (and to us), if we try to get him out of the bed with the lift (means turning him side to side) and putting him in his recliner, than if we leave him as is in the bed. The mattress is holding a little air, and we're putting pillows and towels under him in various places.

    No choice is good.

    The toxic smell of burnt plastic permeates our home. Windows open, fans blowing. We're in for a very long night.

    My biggest fear has been realized tonight. That's why I was so desperate in my search for a pump.

    This shouldn't be this difficult. Should it? What are the odds that our pump would be back ordered until December?

    Something needs to go right in our world, if just for one day. I pray that pump is here in the morning. I'm calling Kurt first thing to ask him the tracking on it and when we can expect it to arrive.

    Back to Jon ~ hoping he and Jim can sleep. I know I won't.

    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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  15. #218
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    Rose I'm so so sorry for all this stress! YOu're exactly right something needs to go right!! I so wish I could help. Praying hard that this gets resolved without any added stress to your family!

    Mary Grace

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  17. #219
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    Thumbs up Pump Relief!

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

    Mary Grace ~ Thank you so much for your prayers.

    It was a long, difficult night. Jon was miserable, so uncomfortable, and sunken into the bed. He filled with air and water, and his SATS dropped to the 80s. Suctioning helped.

    Jim couldn't sleep, worrying about Jon. He got up at 2 a.m. and sent me to bed. Jon was sleeping. How he managed to do that on that hard frame, with just a small amount of air to lift him up, I don't know.

    Jim tried the pump again to no avail. We knew it was toast. We could smell that it was toast. But he wanted to give it one more try.

    My sleep was restless too. But I knew that I was in for another long day today, so I tried to relax and believe it would all be okay.

    I took my walk, because I needed that exercise and experiencing nature to keep me going.

    Then I checked our email, and Fed Ex had the mattress/pump and was on its way. The ETA was before 8 p.m. So we started praying that we wouldn't have to wait that long.

    Jim was in a lot of pain, aching from getting up and down to check on Jon, and carrying the pump around, placing it by the patio door to air it out. Bringing it back in to try it again. Taking it out again. He finally took 10 mg Prednisone.

    I ordered from Instacart to make sure that we have all we need through the Thanksgiving holiday. I stocked up on items that have been out of stock for awhile.

    RELIEF IN SIGHT!

    At noon, as I watched for the shopper to arrive, I saw a Fed Ex truck coming down our street, and I exclaimed, "It's Here!"

    The Fed Ex driver was very kind to bring it into our home, as it weighs 55 lbs, and it's a tall/long box. We attacked that box with scissors, struggled with getting it open, then pulling out the mattress, then emptying the pump out of the box. It was well packed, and we were well spent after that.

    We practically ran into Jon's room, and Jim quickly attached the hose and the power cord. Turned it on, and it worked! We reinflated the mattress to maximum, watching Jon rise slowly from his cramped, hard bed. He was relieved. We were relieved.

    It is incredibly quiet. Compared to the screaming, screeching noise the old pump made, as it pumped its last puff of air. A horrible noise.

    Jon is back on alternating pressure now, and he's been sleeping for 3 hours. Finally, he's comfortable and able to really rest.

    Jim is also sleeping, which he truly needs.

    The box with the mattress remains in our living room. John will visit tomorrow, and he will get the hand truck and take it to the garage. I told Jim that it could sit there forever at this point, because he and I are not going to move it. Everything we did yesterday and today has taken its toll on our bodies. John even offered to come over today to put up the pump for us. Bless him.

    Thank you all for your support, love, prayers, positive, healing energy and good vibes. We love you and pray for all of you and your loved ones every day. And we give thanks for you and the blessing you are in our lives.

    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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  19. #220

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    Happy to hear that the pump arrived for Jon’s bed! Jon must be happy having his bed back to normal!

    I hope Jim isn’t in too much pain from the ordeal and he and you are able to sleep better tonight.

    As always, prayers going up for all of you.

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