Not a lot to share yet but since I am taking you with me on this journey to find the cause of Billy Ray's pain and seeming deteriorating health, I wanted to share that I am feeling more hopeful today.
Not only am I frustrated but the other members of the medical team are probably frustrated because we have tried so many things and nothing demonstrates why the issues continue. The team called in Dr. Rick Bochner from Bend Memorial Clinic.
Dr. Bochner saw Billy Ray in the hospital and again at his clinic yesterday. We went over the results of lab tests run while BR was in the hospital. I am relieved to find he does not have a sensitivity to glutten because that is something I feared. Billy Ray is a big bread fan and there is so much talk about glutten free diets I have asked to have him tested for it several times over years but it hasn't been done. This time Dr. Bochner honored my request and eased my mind considerably.
The thing I felt best about in the visit with Dr. Bochner, though the glutten thing was a big relief, was that Dr. Bochner said "I want to stay with it and find out what is making Billy hurt and fix it." That commitment is encouraging. That is especially true since the other two members of the team are equally committed and have gone far beyond what many providers might do.
Next on the agenda the wonderful colonoscopy on the 27th. I am so relieved that Dr. Bochner had his assistant work to schedule the colonoscopy when both he and Dr. Raudy will be available.
As shared before it is frightening when we have to call in an anesthesiologist because of his history on not being able to come off the ventilator. We met and immediately respected Dr. Todd Raudy when he sedated Billy Ray for a scope of the upper abdomen in April. I have met with many anaesthesiologist over the years not only for Billy Ray but for prior disabled clients. It is clear they understand their field well but none have communicated so much understanding of the specialized needs of disabled children and adults as Dr. Raudy did.
It is still onward and forward. Billy Ray is up and down but able to participate in his Meals on Wheels yesterday before his visit with Dr. Bockner and is now on his Thursday activities.
Until next time,
Peggy Lou Morgan
Websites: www.parentingyourcomplexchild.com and www.lighthouseparents.com
Blogs: Amazon Blog and Lighthouse Parents Blog
Thursday, July 6, 2006
Monday, July 3, 2006
Reading the Signs AGAIN...7/3/06
The weekend has been a bit up and down. Billy Ray has continued to have pain some of which may be caused by the medication for the yeast in his esophagus. Two of his medical providers have said that it could cause irritation and even stinging.
As in the past he has had severe pain sometimes with communication by behavior. Once the pain is treated with his meds, he is anxious to be busy at least for a short time. This weekend he went for short periods with his stepfather to our storage unit to help organize and remove what we can. It is just around the corner from us so when he is tired he can come home and go back later if he wants to.
The revised picture schedule for the week is now in draft. He seems to have more irritation during the week than on the weekend. At this point, I am trying to easedrop a bit to ascertain if he is having more pain, additional staff training would be helpful or the schedule needs more honing. It is a constant need to Read the Signs.
When there doesn’t seem to be any easy answers I tend to pull away as much as possible and try to seek guidance spiritually. That part of the journey is an important one but not necessarily what you expect to hear about when you come to this blog. I have created another blog that will specifically discuss the spiritual part of our journey. It is Lighthouse Parents Blog if you would care to visit.
Until next time,
Peggy Lou Morgan
Amazon Blog
Parenting Your Complex Child Yahoo Group
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Lighthouse Parents Blog
As in the past he has had severe pain sometimes with communication by behavior. Once the pain is treated with his meds, he is anxious to be busy at least for a short time. This weekend he went for short periods with his stepfather to our storage unit to help organize and remove what we can. It is just around the corner from us so when he is tired he can come home and go back later if he wants to.
The revised picture schedule for the week is now in draft. He seems to have more irritation during the week than on the weekend. At this point, I am trying to easedrop a bit to ascertain if he is having more pain, additional staff training would be helpful or the schedule needs more honing. It is a constant need to Read the Signs.
When there doesn’t seem to be any easy answers I tend to pull away as much as possible and try to seek guidance spiritually. That part of the journey is an important one but not necessarily what you expect to hear about when you come to this blog. I have created another blog that will specifically discuss the spiritual part of our journey. It is Lighthouse Parents Blog if you would care to visit.
Until next time,
Peggy Lou Morgan
Amazon Blog
Parenting Your Complex Child Yahoo Group
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Lighthouse Parents Blog
Saturday, July 1, 2006
Keeping on, Keeping On..7/1/06
Billy Ray was discharged from the hospital about 3:30 p.m. on Thursday. I apologize for not writing that on here sooner because I got some wonderful notes from fellow bloggers worrying. It has been hetic. Billy Ray went into the local clinic Friday morning and the case manager came to the house soon thereafter to do a in-home support budget plan for the new year that had been rescheduled until it couldn’t be rescheduled any longer.
I started to write last night but was at a loss to know what to say. It seems like I complain about my frustration too much and that dispels the joy of being Billy Ray’s Mom that I want to convey because it is real. Do I tell you about a nurse who caused problems? Probably not, since there is only one hospital in our area. We might have to go back someday.
I would like to tell you that all is well and we fixed the problem. That is what you want to hear and what I want to believe. My gut says that’s not true. As shared previously Billy Ray was almost sent home from the emergency room in July 2005 with increased psychiatric medications because the ER doc said there was no medical reason for his pain. If advocacy had not convinced the doctor to order a cat scan he would probably have died because his appendix was already leaking bacteria into his abdomen in addition to other issues the surgeon found. My “gut” says we are in the same situation but it is not as simple this time. Billy Ray has a strong relationship with his primary provider and the surgeon and I know that they are doing everything they can to find whatever it is.
They did find that he has yeast in the esophagus but since that is believed to be caused from recent antibiotic treatments for his sinus infection I don’t think that is the answer to his months of pain
I lost my cool at the hospital. I haven’t done that much since I learned to advocate better but when I am afraid for Billy Ray and frustrated that no one is understanding his needs it is a real struggle. I was embarrassed for myself and others on the team who were probably effected.
I feel bad for the team, especially Brice Stanley, PA-C, who is surely as frustrated as I am at trying to find the answer. He has done everything that he could do and more than many would. I am so thankful that he is our family primary provider. It just seems that all the things going on with Billy Ray makes finding answers harder. One thing masks another.
A routine thing happened when he was admitted. I was asked to do a code status. While there was nothing terminal in his present situation, they had to have information about how to handle such things as his heart stopping. I did feel very good about discussing it with Brice and Dr. Masterangelo who have been involved in the team since the ventilator episode last year and felt that we came up with a reasonable plan for that event if it should occur in the future.
Basically we are going to continue to do everything we can to help Billy Ray to have the most quality life he can: the best medical care we can provide and the best activities and care we can provide at home and in the community. Hopefully helping him to have as many smiles like this as possible. However, we are not going the ventilator route again.
Having made that decision it felt peaceful that we were in agreement. However, that night when I couldn’t sleep at the hospital my mind raced to something I had read in Breakthrough Parenting for Children with Special Needs by Judy Winter. In the foreword to that book, Gail Williamson wrote about Judy Winter’s loss of her son: “I am sure the pain of losing a child is just as strong no matter what the child’s needs are. The difference, I believe, is that the void can be cavernous when a parent loses a child with special needs. All those daily activities immediately cease, and you are left alone with time – and time can become your enemy.”
Thinking about that I realize more fully as I have said so often that he is the music and the notes of my symphony, he is the music of my life. It makes me question whether I fear for him or for both of us. Without doubt, I fear his suffering and that is something I will fight with everyone ounce of strength I have. However, I have to admit since I believe that there are multiple types of healing: becoming well through great medical care or divine healing here on earth or in Heaven, the fear of losing him is more selfish. It terrifies me.
He has had a pain pill which helped and now is enjoying time with his stepfather. He gets relief and then wants to do things. We are going to do what we can to give him quality in each day and pray that somehow what seems to be hidden from the doctors will become clear and be fixable.
It has been a struggle to know how transparent to be with you here but seemed important to do so.
Until next time,
Peggy Lou Morgan
Amazon Blog
Parenting Your Complex Child Yahoo Group
www.parentingyourcomplexchild.com
www.lighthouseparents.com
I started to write last night but was at a loss to know what to say. It seems like I complain about my frustration too much and that dispels the joy of being Billy Ray’s Mom that I want to convey because it is real. Do I tell you about a nurse who caused problems? Probably not, since there is only one hospital in our area. We might have to go back someday.
I would like to tell you that all is well and we fixed the problem. That is what you want to hear and what I want to believe. My gut says that’s not true. As shared previously Billy Ray was almost sent home from the emergency room in July 2005 with increased psychiatric medications because the ER doc said there was no medical reason for his pain. If advocacy had not convinced the doctor to order a cat scan he would probably have died because his appendix was already leaking bacteria into his abdomen in addition to other issues the surgeon found. My “gut” says we are in the same situation but it is not as simple this time. Billy Ray has a strong relationship with his primary provider and the surgeon and I know that they are doing everything they can to find whatever it is.
They did find that he has yeast in the esophagus but since that is believed to be caused from recent antibiotic treatments for his sinus infection I don’t think that is the answer to his months of pain
I lost my cool at the hospital. I haven’t done that much since I learned to advocate better but when I am afraid for Billy Ray and frustrated that no one is understanding his needs it is a real struggle. I was embarrassed for myself and others on the team who were probably effected.
I feel bad for the team, especially Brice Stanley, PA-C, who is surely as frustrated as I am at trying to find the answer. He has done everything that he could do and more than many would. I am so thankful that he is our family primary provider. It just seems that all the things going on with Billy Ray makes finding answers harder. One thing masks another.
A routine thing happened when he was admitted. I was asked to do a code status. While there was nothing terminal in his present situation, they had to have information about how to handle such things as his heart stopping. I did feel very good about discussing it with Brice and Dr. Masterangelo who have been involved in the team since the ventilator episode last year and felt that we came up with a reasonable plan for that event if it should occur in the future.
Basically we are going to continue to do everything we can to help Billy Ray to have the most quality life he can: the best medical care we can provide and the best activities and care we can provide at home and in the community. Hopefully helping him to have as many smiles like this as possible. However, we are not going the ventilator route again.
Having made that decision it felt peaceful that we were in agreement. However, that night when I couldn’t sleep at the hospital my mind raced to something I had read in Breakthrough Parenting for Children with Special Needs by Judy Winter. In the foreword to that book, Gail Williamson wrote about Judy Winter’s loss of her son: “I am sure the pain of losing a child is just as strong no matter what the child’s needs are. The difference, I believe, is that the void can be cavernous when a parent loses a child with special needs. All those daily activities immediately cease, and you are left alone with time – and time can become your enemy.”
Thinking about that I realize more fully as I have said so often that he is the music and the notes of my symphony, he is the music of my life. It makes me question whether I fear for him or for both of us. Without doubt, I fear his suffering and that is something I will fight with everyone ounce of strength I have. However, I have to admit since I believe that there are multiple types of healing: becoming well through great medical care or divine healing here on earth or in Heaven, the fear of losing him is more selfish. It terrifies me.
He has had a pain pill which helped and now is enjoying time with his stepfather. He gets relief and then wants to do things. We are going to do what we can to give him quality in each day and pray that somehow what seems to be hidden from the doctors will become clear and be fixable.
It has been a struggle to know how transparent to be with you here but seemed important to do so.
Until next time,
Peggy Lou Morgan
Amazon Blog
Parenting Your Complex Child Yahoo Group
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Wednesday, June 28, 2006
The Ramblings of a Sleepless Night - More on Awareness
We are at St. Charles Medical Center in Bend, again. Billy Ray is continuing to have pain and weird lab results that keep the whole team hopping. "Dr. Brice" had him admitted this morning.
I am writing this in the middle of the night when BR is sleeping but I can't. This time the hospital put us in a slightly bigger room that a rollaway bed will fit (barely) in but I can't seem to relax on in.
Like Sue Rubin wrote "The argument dividing the autism community regarding the need to cure autism as opposed to accepting autism as a natural emission of diversity has been on my mind lately."
I wrote about Awareness my prior posts and also asked for your input relative to why people were somewhat critical of the Autism Everyday, a video by Austim Speaks. The feedback received seems to suggestion that much of "awareness" is really protraying autism as a death sentence leaving no room for joy and satisfaction together with the frustration.
I saw a bumper sticker yesterday. It said "Think Autism, Think Cure". It seems to me there is one main problem with the cure goal, it may take years and probably won't have an impact on some of our kids. Of course, we should fight for a cure but not because so focused on the cure that we lose the good in today, helping our children to be the best THEY can be. It goes back to an article I have loved and quoted for many years, "Don't Mourn for Us" by Jim Sinclair.
Mr. Sinclair recognizes the natural grief a parent experiences when they get the dreaded diagnosis. At the same time he suggests: "But this grief does not stem from the child's autism in itself. It is grief over the child the parents had expercted.*** But this grief over the fantasized normal child needs to be separated from the parents perceptions of the child they do have; the autistic chidl who needs the support of adult caretakers and who can form meaningful relationships with those caretakers given the opportunity."
In a real sense the idea of cure needs to be put in that same perspective. We should give every dime we can spare to places like Autism Reserach Institute and other reputable organizations seeking a cure, advocate for research but make helping our individual child to have the highest quality of life possible.
Thanks for your best wishes through comments, email and my Yahoo list. Billy Ray is actually a little better tonight. I will try to keep you posted.
Please note that the links file is at home on my own computer and I tried to cut and paste the link for my Amazon Blog but the computer in the hospital family room will not left me cut and paste. If you want to see the Amazon Blog scroll down to a prior post to click on it.
Until next time,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Yahoo Group
I am writing this in the middle of the night when BR is sleeping but I can't. This time the hospital put us in a slightly bigger room that a rollaway bed will fit (barely) in but I can't seem to relax on in.
Like Sue Rubin wrote "The argument dividing the autism community regarding the need to cure autism as opposed to accepting autism as a natural emission of diversity has been on my mind lately."
I wrote about Awareness my prior posts and also asked for your input relative to why people were somewhat critical of the Autism Everyday, a video by Austim Speaks. The feedback received seems to suggestion that much of "awareness" is really protraying autism as a death sentence leaving no room for joy and satisfaction together with the frustration.
I saw a bumper sticker yesterday. It said "Think Autism, Think Cure". It seems to me there is one main problem with the cure goal, it may take years and probably won't have an impact on some of our kids. Of course, we should fight for a cure but not because so focused on the cure that we lose the good in today, helping our children to be the best THEY can be. It goes back to an article I have loved and quoted for many years, "Don't Mourn for Us" by Jim Sinclair.
Mr. Sinclair recognizes the natural grief a parent experiences when they get the dreaded diagnosis. At the same time he suggests: "But this grief does not stem from the child's autism in itself. It is grief over the child the parents had expercted.*** But this grief over the fantasized normal child needs to be separated from the parents perceptions of the child they do have; the autistic chidl who needs the support of adult caretakers and who can form meaningful relationships with those caretakers given the opportunity."
In a real sense the idea of cure needs to be put in that same perspective. We should give every dime we can spare to places like Autism Reserach Institute and other reputable organizations seeking a cure, advocate for research but make helping our individual child to have the highest quality of life possible.
Thanks for your best wishes through comments, email and my Yahoo list. Billy Ray is actually a little better tonight. I will try to keep you posted.
Please note that the links file is at home on my own computer and I tried to cut and paste the link for my Amazon Blog but the computer in the hospital family room will not left me cut and paste. If you want to see the Amazon Blog scroll down to a prior post to click on it.
Until next time,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Yahoo Group
Monday, June 26, 2006
The Importance of Chosing the Right Medical Provider
I have talked a lot about Brice Stanley, PA-C, Billy Ray’s primary medical provider in terms of the importance of Doctor-Parent relationships. The relationship with your child's provider is important; however, I want to reinforce the importance of the thoroughness and attitude of the provider. I hold Brice out as an example to all medical providers whatever their degree because of his compassion and because of his thoroughness.
The only doctor I ever fired had Harvard Medical School degrees all over his offices and was a well-respected specialist. He refused to look at the documentation I prepared with Billy Ray’s history, etc.. He would say “just tell me” but then cut me off in the first sentence. Examinations were minimal but he kept writing prescriptions. I could not trust his judgment because he didn’t have a true understanding of Billy Ray.
In an exam a few weeks ago Brice mentioned that one thing he has learned from Billy Ray is to never stop at the “usual” but to look for the “unusual” as well. That is so important. Over the years, I have heard the word “usual” so many times, I have come to hate it. There is nothing usual about Billy Ray.
If our complex special needs children have multiple situations going on, findings and examination can be masked by other things going on. It takes the patience of Job to stay in there looking for answers.
The reality is that not all providers have had adequate preparation to work with a complex child. As Kate Crow, Genetic Counselor, stated in the Foreword to Parenting Your Complex Child (AMACOM Books, April 2006), there are not as many studies done on complex children. This complicates their care for the provider and the parent(s). Thus, the finest medical education may not cover a child just like yours.
Attitude, listening skills and a desire to check every detail for the unusual are probably the most important traits you can look for in your medical provider. I am so thankful we have found that.
Another role of the "primary" that is so important is in effect case manager. The primary must pull together appropriate specialists and maintain communication with them. Many times you don't know the specialists so your trust must be in your primary to interpret data and find an appropriate specialist. Brice is especially good at admitting when he needs another opinion and staying on top of communication with other professionals. I think that is an important part of the job but not always present in all doctors.
This past weekend I realized that if Billy Ray survives all the ever changing medical issues it will be because of the thoroughness of his "Dr. Brice". I take great comfort in knowing that if we lose the battle down the road, we will have done everything that could be done for Billy Ray because of the team headed by Brice Stanley.
Until next time,
Peggy Lou Morgan
Amazon Blog
Parenting Your Complex Child Yahoo Group
www.parentingyourcomplexchild.com
www.lighthouseparents.com
The only doctor I ever fired had Harvard Medical School degrees all over his offices and was a well-respected specialist. He refused to look at the documentation I prepared with Billy Ray’s history, etc.. He would say “just tell me” but then cut me off in the first sentence. Examinations were minimal but he kept writing prescriptions. I could not trust his judgment because he didn’t have a true understanding of Billy Ray.
In an exam a few weeks ago Brice mentioned that one thing he has learned from Billy Ray is to never stop at the “usual” but to look for the “unusual” as well. That is so important. Over the years, I have heard the word “usual” so many times, I have come to hate it. There is nothing usual about Billy Ray.
If our complex special needs children have multiple situations going on, findings and examination can be masked by other things going on. It takes the patience of Job to stay in there looking for answers.
The reality is that not all providers have had adequate preparation to work with a complex child. As Kate Crow, Genetic Counselor, stated in the Foreword to Parenting Your Complex Child (AMACOM Books, April 2006), there are not as many studies done on complex children. This complicates their care for the provider and the parent(s). Thus, the finest medical education may not cover a child just like yours.
Attitude, listening skills and a desire to check every detail for the unusual are probably the most important traits you can look for in your medical provider. I am so thankful we have found that.
Another role of the "primary" that is so important is in effect case manager. The primary must pull together appropriate specialists and maintain communication with them. Many times you don't know the specialists so your trust must be in your primary to interpret data and find an appropriate specialist. Brice is especially good at admitting when he needs another opinion and staying on top of communication with other professionals. I think that is an important part of the job but not always present in all doctors.
This past weekend I realized that if Billy Ray survives all the ever changing medical issues it will be because of the thoroughness of his "Dr. Brice". I take great comfort in knowing that if we lose the battle down the road, we will have done everything that could be done for Billy Ray because of the team headed by Brice Stanley.
Until next time,
Peggy Lou Morgan
Amazon Blog
Parenting Your Complex Child Yahoo Group
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Friday, June 23, 2006
Quiet is Scary
As I said before knowing when to worry and when not to is the hardest part for me.
Billy Ray has been struggling with a sinus infection on top of everything else for a few weeks. He started the second course of antibiotics on Tuesday. He has been whiney and having lots of pain but he still was eager to be somewhat busy, albeit less than normal.
While he went to his Thursday vocational activities yesterday, I posted yesterday with pictures from the day before about how he was playing even sick the day before. The post was no more than published to Blogger than Billy Ray and his support staff returned home. He had refused to go to his favorite restaurant following his activity and had been irritable. He remained irritable and complained of pain until 11:30 p.m.
At 5:30 a.m. he woke up very wheezing and congested and quiet. When he is quiet, in the morning, something is up and that is always scary to me because it is hard to read. We don’t get quiet often first thing in the morning.
I talked to his primary medical provider who is going to try to get Billy Ray into an Ear, Nose and Throat specialist today.
Until next time,
Peggy Lou Morgan
Amazon Blog
Parenting Your Complex Child Yahoo Group
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Billy Ray has been struggling with a sinus infection on top of everything else for a few weeks. He started the second course of antibiotics on Tuesday. He has been whiney and having lots of pain but he still was eager to be somewhat busy, albeit less than normal.
While he went to his Thursday vocational activities yesterday, I posted yesterday with pictures from the day before about how he was playing even sick the day before. The post was no more than published to Blogger than Billy Ray and his support staff returned home. He had refused to go to his favorite restaurant following his activity and had been irritable. He remained irritable and complained of pain until 11:30 p.m.
At 5:30 a.m. he woke up very wheezing and congested and quiet. When he is quiet, in the morning, something is up and that is always scary to me because it is hard to read. We don’t get quiet often first thing in the morning.
I talked to his primary medical provider who is going to try to get Billy Ray into an Ear, Nose and Throat specialist today.
Until next time,
Peggy Lou Morgan
Amazon Blog
Parenting Your Complex Child Yahoo Group
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Thursday, June 22, 2006
Billy Ray is STILL Amazing
As I have said before Billy Ray is amazing!! He can’t feel wonderful with a sinus infection, pancreatitis and constant struggles with acid reflex. He won’t let it keep him down. He can go from sitting in his recliner taking his nebulizer treatment for his congestion, whining and groaning to wanting to go out.
My husband, Larry and I are both sick with summer colds. I was working on a major unrelated project but moaning and groaning about how rotten I feel yesterday. Billy Ray who is more seriously ill than we are, went to the playground. Here are some pictures of Billy Ray and his support staff playing yesterday. They were taken by our consultant friend, Keddie Wanless.
This wonderful playground is courtesy of the First Conservative Baptist Church in here LaPine kindly allows Billy Ray to use it even though it is not our church.
Until next time,
Peggy Lou Morgan
Amazon Blog
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Parenting Your Complex Child Yahoo Group
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