Another realization about the importance of the doctor-parent relationship came with Billy Ray’s medical procedure yesterday. I have written about Brice Stanley, PA-C and Dr. Michael Masterangelo, the surgeon who saved Billy Ray’s life last summer. See an earlier discussion about the benefit of parent-doctor relationships here .
The medical procedure yesterday involved putting a scope down Billy Ray’s throat to ascertain why he is choking more and more seriously lately. I was not particularly worried about that. He has been sedated for many procedures with no problems. However, I am terrified that he will ever have to have general sedation with use of the ventilator because of the incident last summer where he was not able to resume normal breathing and was on the ventilator for nine days following surgery.
On Tuesday, the hospital called to say there had been a change of plans and Billy Ray was going to have general sedation which can mean the ventilator. I panicked for a bit and called Dr. Masterangelo’s office. Almost immediately, I felt stupid because I realized how confident I am in “Dr. Mike” (as Billy Ray calls him).
There are risks involved in medical care of all kinds. It seems heightened for complex special needs children. Risks are frightening but not totally avoidable. Additionally, mistakes do occur in medicine as in any other profession. The news is full of information on mistakes made by medical providers. All of that increases our fear as parents.
In that momentary panic two things became instantly clear: 1) The risk of Billy Ray continuing to choke was great and reduces the quality of his life by taking the joy away from eating. 2) Dr. Masterangelo knows Billy Ray very well, is a highly competent surgeon and I trust him to do everything he can to mitigate risks.
The Anesthesiologist Dr. Masterangelo had chosen was wonderful and seemed to have more of an understanding of Down syndrome than we have experienced at times. He did not use the ventilator and the procedure went very well. It was a comforting experience for Billy Ray and for me to just trust the team. Had I continued to panic instead of relaxing in the confidence that Dr. Masterangelo would do everything to keep Billy Ray as safe as possible, Billy Ray would have picked up on my panic and it could have been a horrible time for all. Instead he relaxed too and did great.
When we have done all that we can to have a relationship with the medical professionals for our child and feel confident in his or her understanding and care for the child, we have to relax in that confidence. An incredible comfort comes with that acceptance and trust. I am so thankful to have that peace with the medical providers in Billy Ray’s life.
Until next time,
Peggy Lou Morgan
Amazon Blog
http://www.parentingyourcomplexchild.com/
www.lighthouseparents.com
Yahoo Group
Showing posts with label Doctor-Parent Relationships. Show all posts
Showing posts with label Doctor-Parent Relationships. Show all posts
Thursday, April 6, 2006
Wednesday, March 29, 2006
Billy Ray "Made My Day" (of a Stranger)
Yesterday Billy Ray went to see his medical provider, Brice Stanley, because of another case of folliculitis (described on my website). While I was registering him at the desk, Ron, his support staff, noticed that the picture I had taken for a prior blog post was up on the wall of the reception area. Billy Ray, not feeling too well, was not very impressed but did eventually get up to look.As you can see here, it is not the best picture of either of them.
As we were walking out after having Brice work on Billy Ray's folliculitis to drain several of them, a lady tried to stop Billy Ray to make him look at the picture. "That's you" she said. "Did you see they have your picture up with your doctor."
Billy Ray was not his usual social self. He called "Mommie" but did go with the lady and me to see his picture with Brice. I then hugged him and told him to go with Ron while I dropped off his presription to be filled.
The whole interaction between Billy Ray and the lady was only a minute or two but she was elated. She said "it just made my day to meet him". It pleased me that even on a bad day he can touch the lives of those he meets.
Until next time,
Peggy Lou Morgan
Amazon Blog
Parenting Your Complex Child Website
Lighthouse Parents Website
Yahoo Group
Saturday, March 4, 2006
Seeing The Light at the End of the Tunnel
The past year has been a confusing one read Billy Ray’s “communication by behavior” because there were so many things to untangle. Parts of these events have been shared partially in prior posts. It will be easier to follow the chronology and share our joy at making progress to be a bit redundant.
Larry and I made the decision in 2003 to sell our house and move to a cheaper property in a cheaper community so that I could be at home with Billy Ray. We knew that moving Billy Ray would create some issues for him so the decision was not an easy one. We have support staff weekdays but Billy Ray’s medical issues frequently require my constant involvement. Additionally it is hard to maintain staff – a problem experienced by many families with complex children even if funding is available.
In November of 2004 we accepted an offer on our house. Just a few days later, I got the call that Parenting Your Complex Child was accepted for publication. We were elated and stressed by both of these happening at once. There was a house to find, move in only 40 days and a manuscript to finish.
Just as the manuscript was finished and sent to the publisher for their magic late last Spring, Billy Ray’s behavior was deteriorating rapidly. Of course, I questioned everything – was this a delayed reaction to the move, was their a mismatch with support staff, had I been too busy to adequately train staff, were there medical issues we weren’t seeing, etc., etc. We redoubled our attempts at staff training at the same time we looked at medical and dental issues. Behavior issues continued to become more difficult and no answers became immediately obvious.
Billy Ray was being treated for one of his skin infections and taking oral antibiotics. As his behavior became more difficult Brice Stanley, PA-C, did a very thorough workup to try to eliminate any and all medical issues. Eventually he sent us to the hospital where they found no reason for his behavior and were suggesting sending him home on increased psychiatric meds. By that time I knew something medical was going on.
After the strongest advocacy I could muster, the emergency room doctor ordered a catscan. Billy Ray had leaking appendice, enlarged pancreas, gastritis and a beginning ulcer. He was rushed to emergency surgery. The reason they couldn’t find it was because the antibiotics for his skin infections were masking the lab test results. Just 47 hours after the first surgery he was rushed back to emergency surgery with internal bleeding. This time he didn’t resume breathing adequately after surgery and had to be on the ventilator for nine days.
In many ways his recovery from that episode could be described as nothing short of a miracle. I have often said it is what happens when you combine good medical care with prayer.
His behavior since that time and the up and down medical issues has been pretty well documented herein. See the most recent update for more on what we learned.
This week we realized that we substantially have our old Billy Ray (active, noisy, easily confused, etc.) back. The out of control behaviors or physical aggression have not occurred in 10 days. Now that the medical team has done it’s part we can start again to do things that work for Billy Ray in terms of adapting his environment and schedule to reduce confusion and behavior difficulties.
Is he easy now? Of course not. It is a constant need to stay on top of things. When he is going to sleep at night, I often observe his journal that happens to be on his computer. I am able to see patterns of behavior that occur after similar circumstances. We can then modify the circumstances that seem to trigger the problems and avoid. In the alternative we can track things that working and continue them.
Now we can do what works for Billy Ray. We don’t have to be stuck on doing what works for every person with a similar diagnosis because Billy Ray is a beautiful snowflake.
It will be tiring for a while to start again but the sense of satisfaction at seeing progress is what keeps me going.
Until next time,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Larry and I made the decision in 2003 to sell our house and move to a cheaper property in a cheaper community so that I could be at home with Billy Ray. We knew that moving Billy Ray would create some issues for him so the decision was not an easy one. We have support staff weekdays but Billy Ray’s medical issues frequently require my constant involvement. Additionally it is hard to maintain staff – a problem experienced by many families with complex children even if funding is available.
In November of 2004 we accepted an offer on our house. Just a few days later, I got the call that Parenting Your Complex Child was accepted for publication. We were elated and stressed by both of these happening at once. There was a house to find, move in only 40 days and a manuscript to finish.
Just as the manuscript was finished and sent to the publisher for their magic late last Spring, Billy Ray’s behavior was deteriorating rapidly. Of course, I questioned everything – was this a delayed reaction to the move, was their a mismatch with support staff, had I been too busy to adequately train staff, were there medical issues we weren’t seeing, etc., etc. We redoubled our attempts at staff training at the same time we looked at medical and dental issues. Behavior issues continued to become more difficult and no answers became immediately obvious.
Billy Ray was being treated for one of his skin infections and taking oral antibiotics. As his behavior became more difficult Brice Stanley, PA-C, did a very thorough workup to try to eliminate any and all medical issues. Eventually he sent us to the hospital where they found no reason for his behavior and were suggesting sending him home on increased psychiatric meds. By that time I knew something medical was going on.
After the strongest advocacy I could muster, the emergency room doctor ordered a catscan. Billy Ray had leaking appendice, enlarged pancreas, gastritis and a beginning ulcer. He was rushed to emergency surgery. The reason they couldn’t find it was because the antibiotics for his skin infections were masking the lab test results. Just 47 hours after the first surgery he was rushed back to emergency surgery with internal bleeding. This time he didn’t resume breathing adequately after surgery and had to be on the ventilator for nine days.
In many ways his recovery from that episode could be described as nothing short of a miracle. I have often said it is what happens when you combine good medical care with prayer.
His behavior since that time and the up and down medical issues has been pretty well documented herein. See the most recent update for more on what we learned.
This week we realized that we substantially have our old Billy Ray (active, noisy, easily confused, etc.) back. The out of control behaviors or physical aggression have not occurred in 10 days. Now that the medical team has done it’s part we can start again to do things that work for Billy Ray in terms of adapting his environment and schedule to reduce confusion and behavior difficulties.
Is he easy now? Of course not. It is a constant need to stay on top of things. When he is going to sleep at night, I often observe his journal that happens to be on his computer. I am able to see patterns of behavior that occur after similar circumstances. We can then modify the circumstances that seem to trigger the problems and avoid. In the alternative we can track things that working and continue them.
Now we can do what works for Billy Ray. We don’t have to be stuck on doing what works for every person with a similar diagnosis because Billy Ray is a beautiful snowflake.
It will be tiring for a while to start again but the sense of satisfaction at seeing progress is what keeps me going.
Until next time,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Thursday, February 2, 2006
Doctor-Patient Relationships and Documentation
I felt really affirmed by Billy Ray's medical provider, Brice Stanley, recently.
Yesterday he came in just before seeing Billy Ray to get a business card to give to another parent. It made me feel good to think he values the documentation methods so much he would suggest them to other parents.
Additionally, in a recent email he made comments about my documents which I think support the benefit of doing them. I also think they say a lot about Brice as a person and as a medical provider. I am sharing them here with his permission.
"I am excited to see** your son. Why? Because... despite the enormous challenge he presents each and every visit I find a unequalled satisfaction in seeing him trust me. I feel content to see your well-done behavioral logs that make my job so much easier. I also have a strange satisfaction in knowing that we have made some difference in his perception of daily quality of life when he smiles in the exam room."
"Each day that I see Billy I learn something new. A better way to communicate, or a more intuitive way to observe his behavior, or how important it is to read reports you bring. Each of these things presents a new challenge and satisfaction in my career. I look forward to seeing him because I get to partake in his well-being and LEARN at the same time."
In prior posts we have discussed the importance of the relationship with your child's medical provider. See Trusting Your Gut and Doctor-Parent Relationships and Developing the Right Doctor.
Until tomorrow,
Peggy Lou Morgan
Thursday, January 19, 2006
Lab Technicians and Other Para Professionals Make a Big Difference
This morning I read reports on a couple of different list servs that I belong to about parents having trouble with their children pariticipating in lab tests. I thought of how fortunate we are to have had Jeff to get us started on the right attitude about lab work because it has been so necessary for Billy Ray.When Billy Ray came to us at 15 months old he had chronic ear infections and malnutrition. It took his developmental pediatirican a long time to get the infections stable enough to have tubes put in his ears. Then he grew and developed so fast they kept falling out. Each time he had to have surgery he had to have blood work.
Jeff was one of the lab techs at Kaiser Permanente. He was always so gentle and made it fun for Billy Ray even when he still sat on my lap with a bottle in his mouth.
Later Billy Ray had to have medication that was blood level for his bipolar so we had to do frequent blood tests. We worked them around Jeff's days off because it made such a difference in how it went for us.
We are in a different area now. However, the lab technician at LaPine Clinic, Dan (BR pronounces it "Damn" but Dan is a good sport about it) and Billy Ray have become buds like Jeff and BR were. It helps so much when he is comfortable. He is the only kid I know who wants to go to the lab.
Until tomorrow,
Peggy Lou Morgan
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Tuesday, January 3, 2006
Trusting Your Gut and Doctor-Parent Relationships
The picture on the right doesn't have anything to do with today's post. It is response to urging from several of your to add more pictures of Billy Ray's day to day activities. This is of him feeding Penny Lane in the mornings. He is messy but she cleans it up.In today’s post, I want to expand on two previously covered topics because of email and phone calls from parents who are concerned about these issues.
Reading the signs our complex children give is always a challenge. Your instinct and skill at reading those signs is very important. When your “gut” that there is a problem is confirmed, a strange mixture of satisfaction at being right and sadness if it is means your child is ill. The most important thing to remember is to trust your gut even though sometimes it won’t be 100%.
On Saturday morning, Billy Ray had a major choking episode at breakfast. Throughout the day, his appetite increased drastically and as I feared so did his blood sugar. He was sleeping a lot as if he was getting sick but there were no apparent symptoms. Sunday his blood sugar was getting worse and he was not eating as much because all he wanted to do is sleep. Finally, called his medical provider, Brice Stanley, PA-C, on New Years night. I worried he might have aspiration pneumonia from the choking. It was one of those times that I did not know what was wrong but I knew that I knew something was wrong.
“Dr. Brice” (Billy Ray needs to call him doctor to understand his role even though he is a Physician Assistant) saw him this morning before clinic hours because he had a crazy schedule after the holiday. Billy Ray has an ear infection with bulge in his ear.
The relationship between your child’s medical provider and you as parents is very important. I have come to believe that listening skills and attitude are at least as important as education. The only medical provider I have ever fired was because he would neither allow me to verbally explain what was happening with my son nor read the documentation I prepared. He just kept prescribing more and more medications without enough information to make informed recommendations and without explaining side effects to us. That specialist had multiple degrees and certificates around his office.
When you have a provider who will listen to the differences your child experiences with various issues, you can accomplish so much better care and understanding. For example, the first question you are often asked when looking for infection of some type is does your child have a fever. Billy Ray has only experienced fevers following surgeries for internal bleeding and a leaking appendice. He has had infections doctors referred to as “raging” without any temperature. Some things the doctors just have to trust the parents about. Thus, the relationship must be strong.
I feel very fortunate that we have Brice Stanley. I am sure that he has never seen another child like Billy Ray but he is sharp in his medical skills and he listens well so he can use those skills to adapt to Billy Ray’s special needs. When I explain that certain behaviors are "signs" of certain things historically, he believes me and checks it out medically. He was there for us the night Billy Ray was taken back to surgery until he was out of surgery and somewhat stable (3 a.m. if I remember right).
Until tomorrow,
Peggy Lou Morgan
http://www.parentingyourcomplexchild.com/
http://www.lighthouseparents.com/
Monday, October 24, 2005
Monday Morning Reflections
Billy Ray has been awake since 6 a.m. or so. He is noisy and bouncing while I am in a reflective mood.
He had such a good weekend behaviorwise. This is a good thing but may mean something is changing. Sickness or fear can manifest itself in two ways: especially good behavior and/or aggression. When his behavior changes there is caution about why.
This is more frightening because this summer he had two surgeries in 47 hours and ended up on the ventilator for 9 days in the Critical Care Unit. Knowing his past difficulty with recovering much less serious illness it seemed unlikely he would recover. However, thanks to Dr. Mike Masterangelo, Dr. Harliss and Dr. Jacobs and a lot of prayers he came back better than I ever dreamed possible.
Dr. Masterangelo kept me hanging in there when I wanted to give up. Reflecting on that this morning I realize we wouldn't have had the wonderful day together that we had yesterday if it were for Dr. Mike and his helpers.
I am thinking about the post I wrote a couple of days ago relative to planning for adulthood and the time I can no longer take care of Billy Ray. Because it is my birthday today I am reflecting on his care if I am not here. I am more confident because of the documentation system but there is always the nagging questions.
Time for a second cup of coffee.
Until tomorrow,
Peggy
www.parentingyourcomplexchild.com
www.lighthouseparents.com
He had such a good weekend behaviorwise. This is a good thing but may mean something is changing. Sickness or fear can manifest itself in two ways: especially good behavior and/or aggression. When his behavior changes there is caution about why.
This is more frightening because this summer he had two surgeries in 47 hours and ended up on the ventilator for 9 days in the Critical Care Unit. Knowing his past difficulty with recovering much less serious illness it seemed unlikely he would recover. However, thanks to Dr. Mike Masterangelo, Dr. Harliss and Dr. Jacobs and a lot of prayers he came back better than I ever dreamed possible.
Dr. Masterangelo kept me hanging in there when I wanted to give up. Reflecting on that this morning I realize we wouldn't have had the wonderful day together that we had yesterday if it were for Dr. Mike and his helpers.
I am thinking about the post I wrote a couple of days ago relative to planning for adulthood and the time I can no longer take care of Billy Ray. Because it is my birthday today I am reflecting on his care if I am not here. I am more confident because of the documentation system but there is always the nagging questions.
Time for a second cup of coffee.
Until tomorrow,
Peggy
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Tuesday, October 18, 2005
Developing the Right Doctor
When we were exploring adoption the doctor we met with commented that we are lucky to have Kaiser Permanente because two great specialists in Down Syndrome in our state were both there. It turned out both were in our neighborhood Kaiser clinic for the first several months after we adopted Billy Ray in our home. One eventually moved to another clinic but has been involved in some measure all these years and the other was Billy Ray's pediatrician for nearly 18 years when she retired.
When Billy Ray was seven his pediatrician sent him to pediatric psychiatrist, Dr. Ron Roy. I learned so much from Dr. Ron. In fact my book would not have happened if not for Dr. Ron. He used to say "I need to know what his day is like" and he taught me to journal. Dr. Ron taught me about communicating my son to professionals who could treat him better if they could understand clearly what he experiences.
It didn't seem to be an issue while we had his longtime developmental pediatrician and Dr. Ron. However, Dr. Ron died several years before the pediatrician retired. We needed to explain Billy Ray's complicated history to new people. We had some great doctors involved following the pediatrician's departure but the challenge of explaining my son to them seemed more difficult.
The way we receive services makes explaining a child's day even more difficult. Even in an hour appointment (rare)it is difficult to explain a month of explosive or changing behavior plus physical symptoms. Explaining it in a ten minute appointment seemed impossible. I used to think constantly about what Dr. Ron had said years before about showing him what we experience. How to do that in a way that could be absorbed in the rush appointments was the challenge.
The documentation system presented in Parenting Your Complex Child came out of that challenge. When the information is communicated in a way that your doctor can absorb quickly it gives him or her more chance to help your child.
Complex children are not typical. They can stump the most skilled professional. With the added understanding you provide with the documentation system your doctor has a better chance of being able to help your child.
Until tomorrow,
Peggy
www.parentingyourcomplexchild.com
www.lighthouseparents.com
When Billy Ray was seven his pediatrician sent him to pediatric psychiatrist, Dr. Ron Roy. I learned so much from Dr. Ron. In fact my book would not have happened if not for Dr. Ron. He used to say "I need to know what his day is like" and he taught me to journal. Dr. Ron taught me about communicating my son to professionals who could treat him better if they could understand clearly what he experiences.
It didn't seem to be an issue while we had his longtime developmental pediatrician and Dr. Ron. However, Dr. Ron died several years before the pediatrician retired. We needed to explain Billy Ray's complicated history to new people. We had some great doctors involved following the pediatrician's departure but the challenge of explaining my son to them seemed more difficult.
The way we receive services makes explaining a child's day even more difficult. Even in an hour appointment (rare)it is difficult to explain a month of explosive or changing behavior plus physical symptoms. Explaining it in a ten minute appointment seemed impossible. I used to think constantly about what Dr. Ron had said years before about showing him what we experience. How to do that in a way that could be absorbed in the rush appointments was the challenge.
The documentation system presented in Parenting Your Complex Child came out of that challenge. When the information is communicated in a way that your doctor can absorb quickly it gives him or her more chance to help your child.
Complex children are not typical. They can stump the most skilled professional. With the added understanding you provide with the documentation system your doctor has a better chance of being able to help your child.
Until tomorrow,
Peggy
www.parentingyourcomplexchild.com
www.lighthouseparents.com
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