Long May you Run

Volunteering comes with great rewards. Generally, those rewards are in the form of quiet satisfaction that you have helped someone or given back to your community, which is plenty. Occasionally, though, there are tangible perks too. I received one of those last night in the form of free tickets to a benefit for UCSF Benihoff Children’s Hospital. The benefit was a concert featuring Neil Young. It was great! Members of the Family Advisory Council (FAC) were invited to attend the concert. I saw at least five of my fellow council members there. These people are my peers, all of us are parents of kids who have (or had) medical issues and are cared for at UCSF.

Steve was supposed to pick me up and we would head downtown together. He did not get out of his meeting until late, though and he was 60 miles away.  I had to get myself down there to pick up the tickets. It was raining and I was cutting it close. I knew parking would be a nightmare near the venue (some people waited in a long line to pay $40 to park.) As I neared downtown, I considered my options. I spotted a car pulling out of a place on the street, grabbed it and hopped in a cab for the last mile or so. It was brilliant.

Just as I was walking in, the nurse called from home. Maggie’s feeding tube was completely clogged and she could not get the food to go in. I told her how to fix it, but it would not work. I called Steve but he was already nearing downtown. I called my neighbor to go help her, but she was not at home. I knew I could fix it in about 10 seconds, but I could not get home.  I had no choice but to have her change the tube. It was a waste of resources, but fixed the problem.

After all the drama and excitement or getting there and dealing with the tube issue, I was hoping for a relaxing and entertaining evening. I was not disappointed. The beginning of the concert was delayed, which gave Steve time to get there. We were told they were waiting for President Clinton to arrive, but that never happened. The evening started with General Colin Powell giving a bravery medal to Paddy, a 12-year-old cancer survivor, which was very moving. Stevie Wonder and his entourage walked right by our seats a couple of times, which was pretty cool. When Neil Young took the stage, though, I did not think about any of that. I was back in high school and college days listening to song after song after song from that era.   

Heidi, a fellow FAC member was sitting next to me. She was amazed that I knew the songs. She was not yet born the last time I saw Neil Young live. She had no idea of his significance and trying to explain the shootings at Kent State and the importance of the song “Ohio” was mind boggling to me. I realized that my “peers” on this council could easily be my children.

That was a special moment for me.

It did not matter, though. As that music played, I was 18 years old and did not have a care in the world. We got home around midnight. When the alarm went off this morning, I did not feel 18 any longer. 

Have a listen to "Long May you Run" http://www.youtube.com/watch?v=nszR0tfp4Es 

And as I said on my facebook status, if you are too young to know about Kent State go look it up. Then listen to "Ohio" which was released just a few weeks after Kent State and you may start to understand the importance of Neil Young to that time  

Fancy New Digs

I had an unusual opportunity last night. The members of the Family Advisory Council for UCSF Children’s Hospital were asked to give additional feedback on the planned design of the new Children’s Hospital, which is ALMOST under construction in Mission Bay. We were invited to tour the "mock up" of several types of hospital rooms that will be in the new hospital when it is completed in three or four years. The rooms were fantastic!


Right now UCSF Children’s Hospital is within the larger UCSF Medical Center. Once this new building is finished, it will be a free standing children’s hospital with state of the art facilities to match the state of the art care. The amount of detail in planning and designing these spaces is mind-boggling. Every color choice and material has to be considered as do all the lighting, wall and window coverings and floors. (Speaking of floors, it is funny to see linoleum making a comeback. The choice for the flooring looked very contemporary and right out of 1942 at the same time. Everything comes back into vogue, I guess.)

Members of the council did have some valid suggestions but they were on minor details. Floors squeaked, get the emergency box out of the reach of children, lose this sleep chair, keep that one, etc. I took it upon myself to try out the parents recliners, sleep chairs or sleep spaces in every room. It’s a tough job, but someone has to do it. This one was not the winner.

 

A couple of us with kids in wheelchairs noted access issues for the showers. They are open without steps, but one has to be able to stand to use them. The architects/designers proudly said every shower would have a bench. We pointed out that many disabled kids cannot sit up and even those who are without disabilities but recovering from orthopedic surgeries etc will need a shower chair or something supportive in order to use the showers. There is also a question of where all the equipment will go for many of the kids. Even with those issues, however, the enormous improvement over the current hospital is noteworthy. Mostly we ooh’ed and ahh’d at the fantastic new spaces.

When this hospital is complete, pediatric patients will have their own room and a big bathroom to go with it. The interactive area will be a TV, computer, mp3 and any other state of the art electronics – most of which we probably don’t even know about yet. The planned ICU rooms are about twice the current size and have everything you can imagine. Even the wee babies in the NICU will have their own spaces (for the most part) which is a lot calmer than the “bays” they have now with several babies in them. These will be more family friendly so parents can visit and even room in without feeling like they are in the way of the medical team.

The most impressive of all, though is the labor and delivery rooms. They are huge! Octomom could deliver her babies in here with plenty of room to spare. These rooms get the most visitors and are designed to impress – and they hit the mark.

Maggie will be out of pediatrics before completion of this project. However, I know the next generation of parents will have the best possible facilities available for their sick children which is great and I can personally attest to the comfort of the sleep chairs - or at least some of them..

Team Justin

Both Maggie and I meet numerous people during our hospital stays. It is not unusual for us to know two or three other patients when Maggie is admitted. There are a number of “frequent flyers” (regular patients) at UCSF Children’s Hospital, and both parents and kids get to know each other.


On Saturday we went to Crissy Field to support one of those kids. Justin is 14 and has Cystic Fibrosis (CF) which is a crappy disease. He has to spend long stretches in the hospital but he makes the most of it. He is well known for the Wii competitions held in his room. Unless you saw him in the hospital though, you would NEVER know this kid has anything going on. He is an active 14 year old that has a ton of fun.

On Saturday, the “Great Strides” walk to benefit Cystic Fibrosis research was taking place at Crissy Field. This disease should be cured. Researchers are making "great strides” toward a cure and Justin’s family is very active in raising money for research. They recruited many walkers to participate and were having a barbecue afterward. It was a fantastic day, so Maggie and I headed down there. Dad was going to join us a bit later after giving his sister and her friends a whirlwind tour of San Francisco.

There were a gazillion people at Crissy Field. I looked around for “Team Justin,” pushing Maggie through the various awnings and parties set up for other walkers. There was a huge group or fraternity boys and sorority girls in one group. Just as I pushed Maggie through their group, the pizzas arrived and we were completely surrounded by frat boys. Note to self – never get between fraternity boys and free pizza. They quickly parted ways so we could pass, but it was a funny few minutes.

I found Team Justin when I saw a nurse from the UCSF PICU. She recognized Maggie and came to retrieve us. There were burgers, hot dogs grilling, and walkers returning for the feast. I spoke briefly with Tina, Justin’s mom (who serves on the Family Advisory Council with me and other parents). I caught up with Chriss, the nurse manager whose kids went to school with mine.

As I chatted, I started to suction Maggie and found the suction machine would not suck. Really? The machine has one function. I could not get it to work. I called to see if Steve was home and could grab the other, but he was still touring. We had to leave. Maggie was doing ok, but I had maybe 10 minutes to get to a working suction machine, which is just about how long it would take to get home. .

I said my goodbyes. Rob, Justin’s dad said,” Aren’t you going to eat.” I told him I couldn’t. I used to (jokingly) say that everything in my life sucked except my vacuum, so I quickly reformed that saying to fit the situation and took off.

We did get a picture of Justin and Maggie, though. Justin is holding his friends dog “Starbucks”

If you want to participate in the Great Strides Event on your area or get involved in the fight against Cystic Fibrosis, check out http://www.cff.org/great_strides/ 

Unrelated but important note: Today is my 24th wedding anniversary. I am a very lucky woman because I met and married the right person for me. As I waited for Maggie’s bus this morning at 7:00AM, chatting with the night nurse who was leaving and the school nurse who was arriving and trying to get the dog to stop barking I thought “who would have thought this would be my life 24 years later” And then I smiled. Better, worse, richer, poorer, sickness, health. We have had ‘em all. Happy Anniversary, dear.

Pizza and Parents

The event at the UCSF Children’s hospital was a great success. The Family Advisory Council (FAC) hosted a pizza dinner for the parents of kids who are in the hospital. As is often the case, it started out slowly, with everyone keeping to themselves, but as the time passed, the parents started visiting with one another. As you may imagine, it was easy for everyone to find common ground.

Because all of the members of the FAC are also parents of kids who are or were frequent patients at UCSF, we too could relate. Sometimes we relate generally, as parents of sick kids, and other times it’s specific. For instance, one mom rather shyly asked what my daughter’s condition was and I told her. She told me her otherwise healthy child had just been diagnosed with a specific disease. She was devastated. I said, "Oh, you need to meet Ms. X. right over there. Her daughter has the same thing. The two of them chatted the rest of the night. I know that woman felt better after talking to another mom dealing with the same disease. Spanish speaking parents could converse with Spanish speaking members of the FAC and get information they might otherwise not be able to get.

We had about twenty stockings full or goodies to raffle off. The goodies included hand knit scarves donated by the mom of one of our committee members and $5 Starbucks cards donated by Tim’s boss. The parents loved it. Many had returned to their children’s bedsides by the time the drawing happened. I had the happy job of delivering the goodies to the parents who didn’t know they won. Generally, I do not like to invade someone’s space in the hospital, but knowing they had filled out the raffle ticket and would welcome the intrusion, I was happy to have the job.

As the event wound down the members of the FAC munched on the fabulous desserts and chatted with one another. One mom had us laughing about getting her daughter airlifted out of Yosemite. Admittedly, this is not normally a funny situation, but this group lives this and is able to see the humor in these situations. At that point, her daughter was not in huge danger, but they were so remote that airlifting was the only safe thing to do. She spoke of feeling like a movie star as the helicopter landed in a field with tourists and her husband snapping pictures. She said when they asked her weight she knew she could not lie. It was a helicopter, and if she lied about her weight, they could all go down. She did not want to be responsible for that. Someone else suggested giving them to total weight of mom and child and averaging them. I said I would make my skinny husband go.

I hope a dreary holiday in the hospital was brightened even a little bit for those families.

I know mine was.

The Pen is Mightier than the Sword

Okay, it is a keyboard rather than a pen and I rarely use a sword so I do not have comparison data. Nonetheless, I can attest to the power of the written word. Ok, the walls of Jericho didn’t come a tumblin’ down, but it is a coup.
UCSF, like any ginormous institution, is a hierarchy of interconnected corporate departments. While the medical care is delivered in an efficient manner, the behind the scenes work of keeping the medical center operating, compliant with laws and efficient takes an army of people. Of course, changing anything or getting anything accomplished means endless meetings and justifications. Unless you get to the right people first. Two of my blog posts Maggie World: Access this! (January 9) and Maggie World: Friends in Tight Spaces (july 29) [not sure if these links are working] made their way to the right person who in turn sent them to the department heads who can make a difference. It was those department heads who came to the meeting last night. These are three corporate bigwigs wanting to hear the issues first hand.
In the beginning of the meeting, we introduced ourselves and explained our role on the council. There are both family members and staff on this council. The family members have children with a variety of issues, from the occasional hospitalization to the chronic and ongoing issues to those whose children have passed away. It is sobering for anyone to sit at the table and listen to our collective experiences. By happenstance, I was seated next to the biggest of the three wigs and was the last to introduce myself. I told them that Maggie was a frequent flyer, she had undergone more than 70 surgeries, had hundreds of admissions, and then said, and I may be the reason all of you are here tonight. I joked that I have had many wonderful experiences at UCSF too, and I have even written about those, but the bad ones make the rounds.
They listened with interest and concern to the stories several parents shared about difficulties with both access and attitude toward our kids in wheelchairs. One gave somewhat corporate answers initially, (a reflex, undoubtedly) but when called on that, started dealing with the parents on a more human level. When she spoke of the general decline in service in the world, she was reminded this is a HOSPITAL, not Exxon. People arrive at a hospital in a heightened state of emotion and the non-medical staff needs to be cognizant of that and of their role in either exacerbating or easing those emotions.
Of course, we heard of the difficulty in finding the space necessary to make everything accessible, and I completely understand that. In my own home, I have to climb over furniture to get around Maggie’s wheelchair half the time. My thought, and that of many other members of the council, is to work on the attitude of the employees while the physical/structural issues are being addressed. Can you teach manners and etiquette to adults who did not learn it from their parents? Maybe and maybe not; but they can be held accountable for job performance. Interpersonal skills should count in a service-based organization. If they did not learn them as a kid, they better learn them now, or suffer the consequences of not meeting job requirements.
Because if they don’t that one crazy lady with the blog will just write about it again. But, if writing about the bad experiences helps make changes, or even get the right people talking about it the experiences are almost worth it.
Almost.

Pay It Forward

The Family Advisory council (FAC) met last night. This is an advisory board of sorts for the UCSF Children’s Hospital. The head of the hospital attended the meeting to thank the council for its commitment to the Children’s Hospital. We do not really see the effects we have anywhere but she assured us that we have a lot of power within the institution. For example, if the FAC has approved something, folks are reluctant to mess with it. That was nice to hear, because it’s easy in a large bureaucracy to feel small and insignificant.

Several new members joined the board last night and we took time to make introductions and explain why we are members of the board. For the parents on the board, the reason is simple: we have a child that was or is served by the UCSF Children’s hospital and want to give something back.

Many of us have been part of this board for two or three years and know the stories of each other’s children. With all the new members, though, everyone explained their situation just a little more clearly. On the other hand, maybe I just decided to listen closer. The stories are as varied as the children themselves. There are patients who spent weeks in the hospital protecting their unborn babies from high-risk pregnancies, some with positive results, and some without. There are parents of children who needed just one outpatient procedure and those (like me), whose child has permanent and ongoing medical issues. There are parents whose children made amazing recoveries from the brink of death and those who lost children despite the best efforts of a great hospital.

As we went around the table telling our stories, I was struck by the individual drama of each story and each parent’s willingness to put that drama aside and work to make UCSF Children’s Hospital a better place for all families. It was humbling but it made me proud; I was feeling two competing emotions at the same time.

If the only change we effect is small, it is worthwhile. It is worthwhile to hear and understand that other families have stories more compelling than mine, and that they appreciate the importance of sharing their unique body of knowledge to assist others in the same position.

There is nothing good about having a sick child, or losing a child, but something good can come from it

Coffee Clatch

I do a lot of volunteer work. It is good for me and good for the community. Of course, it is hard to measure the contribution to the community when you are sitting on the board of a nonprofit and attending numerous meetings. Meetings and fundraising are absolutely necessary so those on the front lines can do their work; but the contribution does not feel very real, it’s intangible. Yesterday I was involved in a simple “hands on” event that meant a lot to the people involved. We simply provided food and a little respite for families of pediatric patients in UCSF Children’s hospital. The families were very appreciative of Coffee, pastries, fruit and the opportunity to mingle with other families. Witnessing the effect and appreciation first hand made a big difference for me, too.

The Family Advisory Council at UCSF Children’s Hospital sponsored this event. I have been part of this group for a couple of years. The Council is comprised of several family members like me who have experience with UCSF Children’s hospital. Most of the parents on this board have children who are “frequent flyers” at the hospital on an ongoing basis or had extended stays in the past that are now resolved. A couple of them have lost their children and a couple of them were labor and delivery patients who had lengthy hospitalizations themselves. In addition to the family members, there are hospital staff members on the council from most of the disciplines serving the children on a regular basis. Not the individual services/specialties, like Pulmonology or neurosurgery, but nurses, residents, social workers and child life specialists. It is a good representative sampling of the people running around the pediatric floors on any given day.

UCSF Children’s Hospital is a 180-bed hospital located on the 6th, 7th and 15th floors of the UCSF Medical Center. It is an amazing place with the best care possible, but it is overwhelming for parents, especially the physical layout. In order to get to the cafeteria on the second floor, you have to be able to comfortably leave your child’s bedside for 20 minutes or so, which many parents cannot or will not do. (I’m one of them) Once you get there, you are in an enormous place designed to serve the entire medical center. You can feel very alone is a room full of people.

A new freestanding Children’s Hospital is in the works, but it won’t be completed until 2013 or 2014. By the time it’s done, Maggie will no longer be a pediatric patient. A lot of the family issues will be addressed by the free standing dedicated pediatric center. Everything in the new hospital will focus on children and the unique issues presented by pediatric patients. The Family Advisory council has been focusing a lot of its time providing input on the design of the new hospital to meet the real needs of families of patients. That has been interesting, but it too is intangible. Will I even notice if the parents seating is within reach and sightline of the patient as I suggested? No, because 1) Maggie will never use these rooms and 2) if we were in there and it wasn’t set up that way I would just grumble and move it around as most parents would. (My point to the designers: Parents do not need their own “privacy zone” in the pediatric hospital room. They are there simply to care for their child.)

Providing that little break yesterday, right on the 6th floor, gave families the ability to grab a quick snack and we even delivered to the rooms of the patients whose families could not leave the bedside. There were at least 30 families in and out of the room and many others served in their rooms. It was also an opportunity for these families to mingle. Not everyone wanted to, which is fine, but for some it was the chance to get out of the room and commiserate with other parents in a similar situation.

I watched one little foursome chatting with each other. It was an unlikely group from my purely observational viewpoint. A white man in his mid 50’s was chatting with a Chinese woman who had some difficulty with English, a very young African American mother and another white 40ish woman with a US NAVY shirt on. I have no idea what the stories of each of these people were, but I bet there are not too many situations that would find them exchanging pleasantries. Having a sick child or grandchild is definitely an equal opportunity situation, every parent can relate to every other parent on the most basic level. Despite the differences in their age and appearance, each had the exhausted almost vacant look that I know I get every time Maggie is admitted to the hospital. As I watched them chat, I notices each looked just a little less vacant after spending a little time together. That was a very tangible reward for me.

Times being what they are, funding for this event was very difficult to obtain. The hospital is strapped like everywhere else. Becky, the Child life specialist who organized this, told me she spent $350 on the food, but it is unlikely she will get that money again. I have to believe that we can get bagels, donuts, fruit and coffee donated once a month. Even donors like to know their contributions are going to tangible things. Caring for families with sick children is very tangible indeed.

So now, it is my mission to hit up the local bagel places and grocery stores for donations to make this event happen at least once a month. It will be good for me and this time I KNOW it will be good for the community.