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Thread: When The System Works

  1. #1
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Thumbs up When The System Works

    Hi and ((((((HUGS)))))) To All ~

    It is so nice to see old friends returning to say hello, and I hope that trend will continue.

    I've noticed that several people have mentioned that this place was a life line for them. I suspect that is the case for almost everyone, who has ever posted here, or even lurked and learned from our discussions. I know that this has been true for me, and so for all of those, who have felt this way, please visit here and reunite with your CN family. Just an update occasionally, or check in to see if a parent has a concern, with which you are familiar based on your experience.

    What you know and what you've been through might just provide a life line for another parent, who was where you were years ago, or yesterday.

    So many times on CN, I have complained about The System and its lack of responsiveness to my sons' needs. I have bemoaned the cutbacks in services, the ridiculously complicated bureaucracy and red tape in acquiring the simplest of authorizations, let alone big ticket items like wheelchairs, and I've griped about the time and energy I've had to expend fighting The System with phone calls, letters, documentation, more phone calls, etc.

    Something changed. I'm not sure what it was, perhaps Jonathan's palliative care status, which is unwritten but not unspoken. Perhaps they all just wearied of listening to my tearful pleas.

    Jon's primary care doc emailed me today that a Nurse Practitioner from his medical group will be making a house call for Jon.

    Why this is huge:

    Jon hasn't seen his PCP in his office since 2008.

    In 2009, Jon was hospitalized for 46 days.

    In 2010, he was in for 8 days before Christmas, then he returned a month later in January 2011 for 40 days.

    In between those hospitalizations, Jon has been bed ridden due to bed sores acquired in the hospital. That lasted 9 months in 2009-2010. This year, his wounds healed within 2 months.

    But then we had the indwelling catheter issues. Jon was unable to retain a catheter for 30 days, and usually needs a catheter change (by home health nurse) every 15 days, because his cath gets clogged with debris and mucous, and he pees over it. He has a cath, because of his enlarged prostate, for which there is no feasible treatment.

    In June, a new nurse injured Jon during catheterization, and he bled for 7 days, ended up in the ER, and we were irrigating him at home. It was not a fun time.

    This makes it nearly impossible to take Jon out anywhere, including to see his PCP.

    Jon's doc is a cool guy, and he is willing to care for Jon "remotely" via email and home health nursing reports. But legally, he should be laying eyes on Jon to continue ordering tests and writing prescriptions.

    Jon's doc was willing to make a house call, and he even suggested it. After many phone calls with Jon's medicaid provider by me and the doc, it appeared that all systems were go for the doc's home visit, until the doc's boss put the kibosh on it. Politics.

    My fear then became that Jon's doc of 11 years, who was also Michael's doc, would no longer be able to care for Jon, unless he saw Jon. And how was I going to make that happen?

    With a Nurse Practitioner visiting Jon at home, as the doc's representative, that problem is resolved. However weird that seems ~ that another nurse (albeit an NP) would take the doc's place ~ it doesn't matter. It's okay with the System. The doctor is still in charge, of course. But the NP has the power to order tests and write scripts.

    The incredible and unbelievable part of all of this is that I did nothing to make it happen. It just happened. No fighting, no advocacy on my part. People were working behind the scenes to resolve this situation for Jon.

    I also don't have to beg for supplies any longer. It is the strangest thing to ask for something and have it appear on our doorstep the following day. Believe me, my boys have needed a TON of supplies through the years, and I've been through the mill trying to acquire them, until now.

    Whatever the reason for this change in The System's response to Jon, I give thanks. Not battling for his needs relieves me of tremendous stress, so that I can focus on providing Jon's care.

    And knowing that Jon will now receive hands on care from an NP, as well as his outstanding home health nurse, is quite reassuring. Jim and I do our best, but we are not trained professionals. We're trained parents! :)

    Despite everything, Jon is well and happy. No complaints ever. His vitals are excellent. Currently, he is maintaining well with a larger catheter. And every single day with him is a blessed gift.

    Thanks to The System, Jon is able to remain at home and receive his care here.

    The programs, which allow him to do so, and allow us to be his caregivers, are always in jeopardy. Stay informed and continue to fight for these programs and services for your children. Even though all is well now for Jonathan, I am old enough to know that that could change overnight.

    Love & Light,

    Mom to Jon, 49, and Michael, 32, 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. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

  2. #2
    Distinguished Community Member
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    My Dear Rose,
    I think I know why these mysterious changes have taken place. You won! You actually won. I think that perhaps everyone in your family's perimeter now understands that you will never give up on Jon. They understand that Jon is precious and that you will continue to fight for his best care and treatment.

    I think that your professional team has finally said to themselves, "if you can't beat 'em, join 'em!"

    That's my opinion, anyway. Sending lots of love from sunny, autumnal Canada. xoDonna
    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:

  3. #3
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    You think that I wore them down, eh? You might be right.

    During Jon's last hospitalization, his intensivist just told all the nurses and therapists, "Give her whatever she wants." If there was a disagreement about a med or a dosage, he erred on my side, saying, "She knows her son better than we ever could."

    I don't think that I wore him down. In his case, since he was also Michael's intensivist during Michael's final illness, I think he realized that I know what's going on with Jon, and I don't make decisions capriciously.

    With the NP visit in lieu of Jon seeing his PCP, I think this occurred because Jon is now considered a palliative patient. Jon's home health nurse specializes in palliative care. This is all being revealed to me slowly as the nurses share their backgrounds with me. I think that they are gently easing me into "end of life" care for Jonathan. While Jon is robust right now, the potential for that to change in a matter of hours exists.

    I think that Jon's doc saw this as a means of keeping Jon as his patient, to classify Jon as palliative, thereby qualifying for an NP home visit on the doc's behalf. In more than one way, this is both politically and economically motivated on the part of The System. And Jon's doc is clever and saw this opening for Jon. He's also realistic and understands Jon's fragile condition.

    It is far less expensive for The System to provide Jon with supplies, nursing, and an NP visit, than it is for Jon to end up in ICU for 6 weeks. I think that is the compelling factor behind this superior in home care being provided to Jon now. And with the right supports at home, we should be successful in keeping Jon out of ICU for awhile. We just celebrated 7 months at home last week.

    But I love your idea that I won! And in a way, I did. Or Jon did, actually.

    How is Nicholas? Is the Tegretol level stable? How is he faring at his new home and how are you faring?

    Thinking of you both and keeping you in my prayers.

    Love & Light,


  4. #4


    Rose, this is wonderful news! I know how it feels when things finally go RIGHT for a change! All your work advocating has paid off! YAY!

  5. #5
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    Dear gentle Rose.

    I believe indeed that you won by your perserverence. Well done indeed. Go to the top of the class :)

    It really is a blessing for you to have your medical team on side. That must be such a relief.

    You are absolutely right about this place being a life line. Without doubt this was THE PLACE for us to come to get advice regarding Grant's health. Rose, you were yourself instrumental in pointing out that Lamictal can cause fevers. Boy, oh boy that was a challenge wasn't it.

    Probably worth remembering again eh =

    When Grant was admitted the first time as an adult (17 1/2 years old) in the adult neurology ward with seizures out of control, he was under the self appointed saviour neurologist for the disabled in the State, Dr. Arrogance Personfied (Dr. AP).

    Well while Grant was in hospital with seizures out of control Dr. AP put Grant on Lamictal. He said that Grant needed to stay in hospital for 10 days and be watched carefully for the Lamictal rash, which could be very serious. As we were supportive of Dr. AP (this was the first admission under him), we went a long with his suggestions.

    As the days wore on, Grant's seizures got worse and he also started running fevers = Rose to the rescue :)

    Rose warned us that a rare side effect of Lamictal was fevers. Well, we mentioned that to Dr. AP, and he said that it was impossible for Grant to be having fevers because of the Lamictal because Grant was on a small dose. Then after about a week in hospital, Grant became so bad that he was transferred into ICU with a massive chest infection!

    When Grant came out of ICU, we asked the ward nurse if Grant could be weaned off the Lamictal because he was running fevers. He checked with Dr. AP, and we were told that Grant would not be taken off Lamictal, and we couldn't take him off because we were not Grant's medical guardians! Dr. AP had done his homework. We at the time were Grant's foster parents and did not have medical authority.

    So, when Grant's seizures subsided, we were able to take Grant home, still on Lamictal. Grant was still having fevers!

    We took Grant to the family doctor and he said that Grant's chest was perfectly clear. He could not work out why Grant was having fevers. He suggested that we take Grant back to hospital, and we asked if Grant could go to a private hospital. The thought of Grant going back to his local hospital was too distressing for us. So Grant went to a private hospital. The following day I faxed the hospital with the Lamictal information. They immediately took Grant off Lamictal, however Grant did end up in ICU for a day!

    When Grant had calmed down, we took him home. After the Lamictal was out of Grant's system, he stopped having fevers! Dr AP is not as good as he makes out is he! :(

    Incidentally, when Grant was admitted under Dr AP, Dr AP's instructions were for grant to be minimally medicated until he had an EEG. So we arrived at the hospital at midnight, with blood oozing from Grant's mouth. The head nurse said that Grant should be in ICU and she was right. Grant did not receive appropriate medication that night and had seizures all night, each time with blood oozing from his mouth.

    In the morning Grant had an EEG and the technician within a few minutes left the room and phoned the medicos, as she felt that Grant was in status! There was absolutely no medical reason whatsoever for Grant to have an EEG and be deprived of appropriate medication, while waiting for the EEG. The only reason for Grant to have an EEG would be if he had sustained a hit to the head or if his seizures were different. Once again Dr. AP mucked up :(

    Pretty horrendous incident if you ask me.

    I reckon that all the old neuro buddies should report in here at least once a month. I miss the updates.

    Best wishes to you Rose. Best wishes to Jon and also to your hubby.

    God bless and seeya.

    Paul, Alison and Grant the champ.
    Foster parent, now medical guardian and administrator
    for Grant the champ aged 30, yes 30!

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