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,
Rose
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,
Rose
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