Aren't you glad you asked me here...

Yesterday I had the opportunity to participate on a panel with two other moms. All three of us lost a child in the last year and the panel was part of a two day course at UCSF for medical providers on end of life issues. As the day approached, I was really questioning my decision to do this and kind of dreading it. But I am impressed that these health care providers want to hear from families. There were about 50 medical people taking the course, mostly nurses. Each of the three moms on the panel recognized one or two people who had worked with our kids.

I'm not going to lie. That was a heavy 90 minutes.

I think there were times when everyone in the room was crying. We discussed the end of life issues involving out own children and what the staff did right or wrong what could have been done better . They want to get things right, even when they can't fix the medical issues.

Though it wasn't specifically applicable to what actually happened at the end of Maggie's life, I took advantage of the opportunity to address some of the disability bias she had experienced in the medical world at other times she was in medical peril. I felt I owed that to Maggie and to her disabled peers. I cautioned the audience to treat their disabled patients with the same respect as the non disabled and to make medical decisions solely on medical grounds, not on unrelated disabilities a patient might have.

I told them about the surgeon refusing to do a relatively simple procedure on Maggie and then saying right in front of Maggie, "You didn't expect her to live forever, did you?*"  I told them about doctors asking me how much intervention I wanted for her for a given malady that required nothing more than simple antibiotics. I told them about reminding some doctors they would never ask these questions if I brought in one of my sons with the exact same symptoms.  I told them that the subject of a DNR (do not resuscitate) is broached far sooner with a disabled patient than their non disabled peers. I also told them that  while "quality of life" is a real issue for medical personnel to consider in some cases, that it is open to judgement and bias and is a frightening slippery slope for the disabled and their families. I told them that many of the parents of Maggie's peers had been told to institutionalize their children because they would be vegetables. (None did and their children are thriving.) I told them to be aware of the bias against the disabled that is so prevalent in society and especially in the medical world. I told them children and families can adapt to anything - we are proof of that - and that they have to live the lives they are given in the best way they can. The medical world can and should help that to happen, not sit in judgement about the quality of those lives.

I didn't plan on saying any of that. I felt like Maggie was sitting on my shoulder saying, "mom, don't forget this and this, and what about that." And when it was over I was glad I participated and received a lot of positive feedback from the audience.

Of course those willing to take a two day class on this topic probably are the last 50 people who needed to hear it, but I was glad I got to say those things anyway.

All of the examples I gave really happened to Maggie in her life, but did not happen in her final days. There was no question about how that was handled and I told them that too.  The circumstances of Maggie's final days were different from those of the children of the other two panelists. It is likely that every single one is different, which makes it that much more difficult for the professionals to find right answers. What works for one family in one situation might not work at all for another.  Still each of the three of us believed that the personnel helped to make the worst days of our lives more bearable.


__________

* this was in 2011. We went to another doctor who performed the simple procedure, fixed the problem and allowed Maggie to enjoy the healthiest two years of her life. In fact she never spent another night in the hospital after that procedure until the day she died.

Ch ch ch Changes

I participated in a panel yesterday at UCSF. I do this fairly regularly and I enjoy it. Various groups from UCSF listen to parents of patients, and in yesterday's case to an adult patient as well, while they talk about what works and what doesn't work for families when one is hospitalized. The groups are interested in the feedback because it really is their desire and mission to provide the best care possible.Yesterday's group was the Patient Satisfaction committee, who are even more interested in how to keep Patients satisfied.

As the panel wrapped up  I found out that  tangible change happened as a direct result of my participation in a panel presenting to this group a year ago.  One of the leaders told me that last year I mentioned how difficult it is to leave Maggie's bedside, even to grab a cup of coffee in the morning. She said they instituted the coffee cart on the hospital floors because they had never considered that difficulty until they heard me mention it. That was nice and gratifying.

There was polite applause from the group but that changed to laughter (by most) when I decided to strike while the iron was hot. The second she finished telling me about the change, I said, "Oh, by the way, parents really need to have a glass of wine and cheese around 5PM."

After all, there are documented health benefits and this IS a hospital, right?


Not sure that's going to happen, but you can't blame a girl for trying.

Speaks Latin, my Satin Doll.....

 I learned in 9th grade Latin class that the suffix -logy comes form the Laitn  (or Greek) word "logia" which means "study." In English it is widely used to describe scientific pursuits,  e.g. geology or neurology. Not sure why, but it seems to be limited to science. Scientists and doctors are geologists and pulmonologists; but teachers are not called educationologists, and lawyers are not legalologists. I guess the sciences are a little more serious and the usage of Latin has a bit more gravitas (also Latin)*.

Maggie has more than her share of   "ology" and "-ologists "in her life. We are seeing a few today. At 1PM Maggie has an appointment with urology, which is something we have to do every couple of years.  Of course, she is having some problems with her trach again, so I called pulmonology yesterday. The pulmonologist wants us to stop by and see her too. She thought I was going to GI (gastrointerology) but I told her no, urology. She said oh, they're right here, just tell neurology that you're coming to see us too. Me, no, it's UROLOGY, not NEUROLOGY and they're on a different floor. I'm supposed to check in there on the 6th floor and come down to pulmonology while I'm waiting to be seen in urology - there's generally a long wait.

That will be my second trip to UCSF today. I am sitting on a panel this morning to discuss our experiences there. I would have said not to this one but I heard it was a presentation for newly hired nurses. They need to hear the family perspective. I love nurses and would do anything to help them; but selfishly, I am excited to get my words in their heads while they're fresh and new. I have to be there at 11:00 AM, leave at noon, pick up Maggie from school at 12:30 and be back for the 1:00 appointment(s)

So, I have no idea how this will all work, but Maggie will be seeing various ologists on various floors at the same time. I wish I knew horology** so I could figure out how to do all these things at the same time

*Latin - it's not just for crossword puzzles anymore.


**study of time. admittedly and purposefully misused...

Meet the Quarterback

I participated in a panel presentation yesterday at UCSF Benihoff Children’s Hospital. There were four parents on the panel. Each has a child who is/was a patient at the hospital. All four of us are members of the Family Advisory Counsel for the hospital and making these presentations is part of our “Parents as Educators” program. The audience was hospital staff, including all level of doctors, from resident to the medical director, nurses, therapists, child life specialists, social workers and other staff.  The audience seemed interested and engaged as each of us answered questions and gave them the view from the “other side”

The presentation was called “Meet the Quarterback” referring to parents as the play callers in the child’s care.  The name came from something I said at a meeting some time ago. The discussion involved making sure staff was welcoming parents or caregivers as part of the medical “team.”  I said, “They want to make me part of the team but what they don’t understand is that I’m the head coach.”   They loved that crack because it was obviously coming from a completely different perspective. "Head coach" became "quarterback" to avoid offending any doctors who are under the (mistaken) impression that they are the head coach.

Medical personnel change all the time, especially at a large teaching hospital like UCSF. If your child has a chronic issue, you better be prepared to provide necessary information to new practitioners. If your information is not accurate or up to date, your child may have to endure unnecessary or repeated procedures. It helps everyone, especially the child, if the parent is part of the team.

Not every parent is the quarterback (or head coach) or wants to be. They happily cede all decision making to the doctors. I would venture to guess, however, that is not often the case when a child has chronic problems.  Though many parents may not speak English or have cultural differences that preclude them from taking part, they are still parents and they know their child better than anyone else does.

We tried to impress upon the audience the pressures of having a sick child and especially the sick child they see in the hospital is not the whole person. Maggie’s disabilities and conditions are part of her but they do not define her. It is just one part and the doctors (et al) bring their expertise to that one part. The parents have to balance the illness with the rest of the child’s life and that of the rest of the family, including other children.

The panel addressed how they have been empowered as parents to assume the quarterback role. The answers were as varied as our children and their conditions, but each of us could point to a time where someone said, simply, you are the mom, you know best. I told them the moment that happened for me when Maggie was a very small baby.  

I have not shut up since. 

Presenting....

This morning I participated in another parent panel. This is a fairly regular thing for me, being on a panel with other parents of kids with “special health care needs.” I put that in quotes, because it is such a general term. The kids are as varied as can be; they include boys and girls from 0 – 18 years old and the special needs can be anything from disability to cancer and everything in between. Maggie has so many different dramatic needs and I have such a big mouth, that I am asked to make presentations all the time. I like it. I always learn something new about someone's situation, or even about my own attitudes.

The audiences also vary somewhat. Lately it has been mostly health care workers but I have also participated in presentations to many educators and students. Each of those groups encompasses many different types of people as well. Health care workers include doctors, nurses, social workers, administrators and therapists. Today it was nurses and social workers with a couple of doctors and administrators as well. The presentation is basically what life is like on the other end of the medical world, that is, what it’s like to be the patient, or the parent of the patient.

It is a good opportunity to dispel some myths about our family life. Maggie is a ton of work, but that does not define her. Our family is hamstrung by the level of care she requires, but that does not mean we do not have fun. The boys did not have a ruined childhood because of having Maggie as a sister. Yes, it is different, but, to use an overused phrase, “it just is what it is.” It is our reality and we deal with it, just as the other parents deal with the challenges their children present. Sometimes the toughest challenges come in the best packages.

Today's panel was held at George Mark Children's house. The George Mark house is the only freestanding children's hospice in the US, but I understand one is about to open in the Phoenix area. It is an amazing place that provides end of life care to the dying children and also provides out of home respite for weary families like mine. A child can stay at George Mark for up to two weeks in respite care and I presume as long as necessary for hospice care. Families can stay as well if they want. If you are interested in this, I encourage you to check out their website. (www.georgemark.org). They take families from all over the United States.

This was my first visit and the place is incredible. It feels like a sprawling home but has all the equipment necessary to care for Maggie or almost any other child. I looked into George Mark a couple of years ago. It took all my courage to make the call and the person who spoke with me gave me inaccurate and very hurtful information, indicating Maggie could not stay there. Any hope I had for a break from this insanity was dashed by her misinformation. I never called back. After seeing it today, I believe Maggie could stay there if Steve and I ever needed to leave town for a week. It would be difficult for me, and likely very difficult for Maggie, but it has entered the realm of possibility. Perhaps we could get a break….

Like every other non-profit in America, George Mark Children’s house is having difficulty raising money. It would be a crime if they had to discontinue services.

Parenting for $10, Alex

This morning I sat on a panel with another parent describing what it is like to care for our children with “chronic life threatening conditions.”

I know. You are sorry you missed it.

The parent panel was the first installment of a long day of classes/seminars/whatever for the health care professionals enrolled in the continuing education program. I have done this many many times in the past and greatly appreciate the interest that the nurses, doctors, respiratory therapists and other professionals have in Maggie’s story, and in the story of other families . It never ceases to surprise me that during the course of the panel discussion, something or another will make me emotional.

People inevitably ask questions about how the news of Maggie’s medical problems and other issues were communicated to us. They want to know because that is one of the most difficult parts of their job and they want to know what goes right and what goes wrong for families. I appreciate that very much, but as soon as I start talking about it I am right back in the room when I first learned of (some of) Maggie’s problems, and the anguish we felt. I can feel tears welling up in the back of my eyes.

It happens every time and it surprises me every time.

My response to this concern about communicating – there is simply no good way to give someone bad news. There are a hundred bad ways, but I cannot think of a good way. I was appreciative at the time that the doctors came in with information and some idea of what was wrong so I could focus on that; but it was still not a positive thing for me. It would have been a lot more negative if they were cavalier or flip about things, but no one was.

We were asked to recount a time when communication with and between medical providers really worked in a positive way. Even though I had days to prepare this, I could not come up with an example. I told them honestly, 95% of the time the communication works fine, partly because I don’t let up until I get answers. For purposes of remembering, however, only the other 5%, the bad ones, come to mind. You remember and recount the bad ones, not the good ones. We take the good ones from granted. I hope they realize that 95% is still an A.

It is good for me to do these panels, even though they can be emotional. I can focus on how far we have come, the things we have learned and the person Maggie is. Sometimes all of that is lost in the day-to-day care and management of all of this.

Caring for a child with chronic life threatening conditions is a ton of work, physically and emotionally. However, being Maggie’s mom is fun. Participating in these panels allows me to transform her from the medical definition of her status to the person she is. She's a lot more intersting as a kid outisde of her numerous diagnoses and issues.