Results 1 to 10 of 401

Thread: What Is Next For Jonathan?

Threaded View

  1. #1
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Blog Entries

    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.


    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.


    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.


    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,

    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.

  2. The following 2 users say "thanks"

Similar Threads

  1. Jonathan's Graduation and Prom
    By Nick,Brian,andJon'sMom in forum Child Neurology
    Replies: 3
    Last Post: 09-03-2017, 09:00 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts

BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.