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Thread: What Is Next For Jonathan?

  1. #1
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Question What Is Next For Jonathan?

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

    I decided to start a new thread for Jonathan to make it easier to keep track of his issues, separate from Jim's journey.

    THE TRACHE

    Jon's nurse spoke to our pulmonologist, Dr. H, about Jon's trache removal/replacement. We haven't had a chance to talk on the phone yet, and she only emailed me one sentence: Dr. H says that Jon needs to go to the ER.

    Of course, this is what we dreaded. Jon weighs about 200 lbs now, thanks to lymphedema fluid build up, and his body is so twisted and contorted. Moving him from his bed to a narrow, hard gurney, then taking the ride to the hospital, which is only 8 minutes, but an eternity for him as the suspension on the ambulances is awful, then waiting in the ER hallway for a doc to assess Jon and send him to a room, then waiting, waiting, waiting ...

    I have to take with us a bag full of: His medications, his formula/spike set/syringes, paper cups, bottled water, trache, colostomy supplies, extra "shirts" (hospital gowns), under pads, wipes ...

    And if you're thinking that the hospital should have all of these things, they don't. It takes 24 hours to order anything they don't carry. Jon's formula is not widely used. Nor are his colostomy supplies. His special under pads, which I order and pay for, because Medi-Cal won't, take days to arrive, and by that time, his bottom looks like hamburger. (That's when he's admitted.)

    This is not my first rodeo. In fact, it's more like my thousandth.

    The purpose of the ER visit will be to determine why Jon's trache isn't easily removable. I suspect he'll have an x-ray, which of course, will expose his thyroid to radiation and exacerbate his hypothyroidism. Maybe a CAT scan, if anything untoward shows up. Or an ultrasound (much less stressful and can be done at bedside).

    We'll be there for hours, and Jim and Jon particularly will be exposed to lots of germs. I may have to insist that Jim stay home just to avoid that environment. That will be extremely difficult for all of us. But we have to protect Jim.

    If surgery is necessary, I would expect that it would have to be scheduled, as this isnít an emergency. Jon is not in distress, and his SATS are excellent. For this, we give abundant thanks.

    At least Jim doesnít have chemo next week.

    BLOOD WORK RESULTS AND SUPPLIES REQUEST

    Itís been a week, and weíve heard nothing. I know our PCP is busy, but this stuff is really crucial for Jon right now, and a week is a ridiculously long time to wait for a response.

    So, I will be emailing our doc, then calling his office on Monday (when everyone else calls Ö) to follow up.

    With everything else thatís been happening in our family, I havenít had a chance to schedule Jonís PT to visit and address his lymphedema. And now, with this issue looming, we may miss another week of opportunity.

    SEIZURE

    At 2 a.m., when I was giving Jon his seizure meds, he had a seizure. Clenched fists, stiff arms, grimacing expression, glassy eyes. It lasted about 6 minutes. I woke Jim, because I didnít know whether Jon would go full throttle and have a tonic clonic. That would put us in ER right away, and his trache would have to be removed for intubation on a ventilator.

    I vividly remember ER in 2012, when Jon had a 3 hour tonic clonic, turned blue in ER, and the respiratory therapist fumbled with removing his trache for intubation. We do not want to go there again.

    Once the seizure concluded, Jon was cheerful and chatty, then he finally fell asleep. Weíve been hovering today.

    We will increase his seizure meds dosage this evening to make sure that he is covered before his 2 a.m. dose, as heís troughing.

    Perhaps it is the full moon wreaking havoc on us now. I have no idea. I just keep clinging to my faith and trust that all will work out as it should. Sometimes that is truly difficult. This is one of those times. I have to dig deep into my reservoir of strength and pull out a rabbit.

    We thank you so much for your prayers, love and support. We are so grateful for your friendship and the blessing you are in our lives.

    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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    Dear Rose,

    I have no words but want to send all of your family my continued prayers and good thoughts. I hope there will be a better resolution for Jon and avoid going to the ER.

    Marcie

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    Marcie ~ Thank you for your prayers and good thoughts.

    Jonís nurse and I finally had a chance to chat today.

    She told me that Dr. H said that a Respiratory Therapist (RT) is usually sent to home health patients to change traches. Since that isnít the case with Jon, he recommended going to ER, where an RT could change the trache. And, I guess, if there is a problem, Jon would be there to get tests.

    We decided that we would try it again at home, and that she would bring another nurse, who knows Jon and actually taught his nurse how to change his trache. We are going to experiment with different positioning, suctioning prior to removal, and attempting to lubricate the tube around the stoma. Jim suggested that we try holding/pulling the skin/granuloma around his trache to facilitate removal. One of us can do that, while the nurse pulls out the trache.

    Tomorrow, Iím going to call Jonís new Medi-Cal case manager to ask her whether she can identify a home health agency, which offers RTs. If so, then Iíll find out the protocol to schedule an RT visit at home. That will require an order from Jonís PCP, or even perhaps Dr. H would do it for Jon. Then Medi-Cal has to authorize the order. Since this will take time, weíre going to try doing it with Jonís nurses, while we wait.

    So, ER will be our last resort.

    Jim and I discussed him staying home, if Jon has to go to ER. He agreed that it would be best for him, although he will want to be there with us. He said he would use that time to change the mattress cover on Jonís mattress, which is shredding. Jon has to be out of bed for us to do this, or at least elevated on his lift sling, which we did once with Johnís assistance.

    We deeply appreciate all prayers and positive trache removal energy sent our way!

    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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    Distinguished Community Member agate's Avatar
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    Rose, it sounds as if you've come up with an ingenious solution by having Jim change Jon's mattress cover if/when you and Jon need to go to the ER. It's a shame that the seizure meds aren't doing a better job.

    I'm sure there is one doctor in charge of coordinating all aspects of Jon's care. I hope that that person is keeping on top of the situation and is aware of the many issues involved.

    It must be very difficult to get it all right when there are so many things threatening to go wrong.

    I don't expect that anything I say will be of much practical use to you, but just wanted you to know that your friends are here and in your corner, hoping for the best.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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    ((((((agate)))))) ~

    Thank you so much for your caring and support. We are so very grateful for our friends, and the prayers and positive energy we receive from all of you sustains us and gives us strength to carry on.

    Jon's seizures are primarily controlled, but every once in awhile, he has a breakthrough seizure. We just increase his dosage in the evening to cover him until his early morning dose. That generally works, unless he has an underlying issue, like an infection, fluid overload, constipation, or sleep deprivation. His seizures are almost entirely sleep-related.

    Jon's PCP for the last 17 years is in charge. The poor man has to fill out hundreds of forms for Jon's various programs, and for Jon's formula, supplies, meds, everything. He just started his practice 17 years ago, so young, so innocent, so idealistic. He's a very sweet, compassionate, hard working doctor. That's why he has too many patients, and we often have to wait for the things Jon needs. It's been over a week since Jon's blood draw, and we still don't have the results.

    Tomorrow, I'll be calling his office to follow up on my faxes and emails to make sure that the ball is rolling.

    "It must be very difficult to get it all right when there are so many things threatening to go wrong."

    It is.

    Well said! You just summed up my entire life!

    Thank you!

    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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    Sweet Rose, I have signed back up on CN. It has been so many years since I have been here. I lost all my login information. I will try and check out child loss in the next few days, and share some of my stuff. Saying HI, to all my old neuro buddies. This is Tracy Sheppard, Megan's mom. Love and prayers to everyone.

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    Hi Rose,
    I'm sorry Jon had a seizure! I am praying all is resolved soon. I had computer issues which is why I have not been here lately. Sorry about that too.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    Praying all of Jon's issues will be resolved quickly. You have enough stress on your plate now. Please be sure to take time for yourself! I know how hard that can be, but oh so necessary.

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  17. #9

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    Hi Rose,

    Continued prayers going up for all of you.

    Have they figured out what to do about Jonathan’s trache?

    Welcome back Tracy! Happy to see you here!

    Marcie

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

    Tracy ~ So happy you joined us again! I hope everyone here will read your wonderful tribute to Megan on our Coping with the Loss of a Child forum. Here's the link:

    http://www.braintalkcommunities.org/...aring-my-angel

    funnylegs4 ~ I'm sorry that you've had computer problems. I hope that your computer is working well now. Thank you so much for your prayers. Thankfully, Jon has not had another seizure. He's a little tired from the increased dosages, but we'll take that any day over a seizure.

    Tamie ~ Thank you for your prayers.

    As you know, "time for myself" is an illusive thing. I do continue my morning walks, which is important to maintaining a good blood pressure, as well as relieving some stress.

    Today I spent the morning running errands and the afternoon on the phone trying to sort out Jon's supplies with the new vendor. They changed about 80% of the supplies to what they have in stock, and I insisted that Jon needs exactly what I requested and not substitutes.

    They would have sent syringes that wouldn't fit in Jon's catheter, canisters that wouldn't fit in Jon's suction machine, a different style of colostomy flanges and bags, etc.

    They wanted to send 250 ml bottles of sterile water, instead of 100 ml bottles. We use smaller bottles, because as soon as they are opened, the water is no longer sterile. The irrigation water for his foley cath must be sterile. The water to clean trache, wounds ~ all sterile. But we don't use 250 ml at a time for any of those needs.

    I spent 45 minutes negotiating, as the customer rep kept putting me on hold to talk to her supervisor. Finally, she told me that they would special order all of Jon's supplies, and it might take 7-10 days. Fortunately, we have a cache of supplies now, as Jon has been well.

    This is the kind of nonsense that drives up my BP. I knew there would be a problem. I developed this list of about 20 items Jon needs, with reference numbers and quantity needed. Jon's doc sent that exact list to the vendor. They decided to give Jon whatever they have on hand. Been there done that hundreds of times.

    I think I'm going to write a letter to the new director of the nursing agency, who stopped Jon's supplies coming from the agency. Perhaps I can let this Director know just what I have to go through to get the supplies Jon needs as a Palliative Care patient with complex needs, and I, a Senior Citizen, whose husband has Stage IV cancer, am the only caregiver. I'm struggling with maintaining a healthy BP, and all of this is increasing my stress level. Dear Director: This is what you're doing to our family. Yeah. I think I'm going to write that letter.

    I also had to call our doc's assistant, because the vendor had a question and called her. I also had three messages about Jon's G Tube formula, so I had to sort that out.

    Jim and I had a late lunch, then I started bathing Jon, and Jim took over noticing my grimace from back pain. Then, I took over, when Jim was out of breath and needed to sit down.

    Then, I got out everything we need to turn Jon and bathe his back, and John came over to turn Jon.

    God Bless Jim ~ he just came into the office to tell me that he's going to fix his own dinner! I know that I'll be involved in that somehow, but Jim has been so very helpful doing dishes and clean up. He helped me carry in groceries today and put stuff away.

    Last night, he got up at 12:30 and ordered me to bed, as I'd only slept 3 hours the night before. He's worried about me. He told me today that I look frail. I don't look frail. Old. Yes. I look much older than I am, which is odd, because for many years, I looked younger than I was. But for an old lady, I do have some fairly decent biceps. And I walk every day and climb up/down stairs, and am on my feet cleaning, caring, sweeping, cooking, laundry, whatever. So I am NOT frail!

    My posture isn't good, and I used to have such a great posture, but standing up straight now seems to be too painful. So, that makes me look "frail," perhaps.

    So this is why taking any time for myself is very measured and often overpowered by external issues and just trying to keep the ship afloat.

    Sorry for rambling ...

    Marcie ~ Thank you for your prayers.

    I hadn't heard from Jon's nurse for several days, so I texted her today, thinking we might change Jon's trache tomorrow. She texted that she hadn't received the order from Jon's doctor, and we can't proceed without it. I don't know why. I guess she had to get an order from the doctor every month to change Jon's foley catheter, and every 3 months to change his trache.

    So, we're in limbo now. I'm trying to believe that everything happens for a reason. I can't imagine what that reason is right now, but there must be one.

    Thank you all, who are following our journey and sending us positive, healing energy. It's impossible for me to express my gratitude to the many friends I have found here on BrainTalk in the last 17 years. Please know that as much as you care about us, we care about you. You are in our prayers.

    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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