Better Food Please at Seattle Children's

I feel like a 4 year old in a room of adults.  They are talking and drinking and discussing big heavy important topics and I can not get their attention. The House is on Fire.

They pretend to listen when I interrupt but the house is burning.  First I ask nicely. Then I get a bit frantic and then I scream.  They still just go on eating and drinking and ignoring me.

I have always had this issue.  Some answers are so clear to me.  When I was a family lawyer I could see the solution but soon learned it takes some people longer to have clarity. I had a case once where I made a suggestion during mediation as to what the best solution might be.  When the case settled, I withdrew.  The old "hitting your head against the wall" thing.

The case went to trial and the judge did exactly, down to the minute, what I had suggested.  I some times see to the end and don't understand it is necessary to "Show your work".

So for more than a year I have been screaming at the hospital.  I had a friend suggest they just don't take me seriously because they think I am kidding.  How could a mom with a child going through a transplant thing Food is important? 

I have never been a tree person, but rather a forest person.  How can the food they feed the kids not be important?

So as I sit here today, again at the end of my 10 cup pot of espresso, I will try again.  I know there is a full floor of exhausted parents that have to deal with side effects and new meds and bad news about their children's.  They have left jobs and families and dogs and everything they love and are on the SCCA floor fighting for one more day for their child.  They don't want to go over to the Met Market and spend $60.00 or even $6.00 for something to feed their child. 

I am not done.  In fact the further out from transplant we get, the more real energy I have.
http://www.facebook.com/BetterFoodPleaseAtSeattleChildrensHospital

Better Food Please

http://www.facebook.com/sally.a.lanham#!/BetterFoodPleaseAtSeattleChildrensHospital

I started a Facebook Page about the Hospital Food at Seattle Children's Hospital.  Spread the word....

Sometimes things just GO

It's not right or wrong, it just is.  All day, we spent all day at the clinic.  No way around it, and someone asked if spent a lot of time waiting and we really did not.

In at 10:30:  Back into a room.
Heat the child
Look for vein that wants to cooperate
Look some more for a vein that wants to be invaded.
Look again.
Look yet again.
Find the vein, Mom looks away.

I want her to have a port put in because I cann't stand the pokes but then I don't think that is a reasonable request.

IVIG, 138 minutes plus a flush or two.

Then a doctor appointment.  Never were we bored or kept waiting, not really.  It just is how the day goes.

I am practicing the "nature, time and patience" chant a lot.

I spoke to Michael Reinfelt today.  His daughter had a transplant many moons ago.  He and Susan came to visit us during transplant.  He told me it took about 4 years before life really settled down. 

I guess we have a bit of a way to go.  I can do this.  She can do this.  Sometimes I just assume this is going to over and done.  We have had no big set backs, no big serious issues, no ICU, no drilling of bones to stimulate growth. 

WE can do this, we can do this, we can do this.  Said three times while twirling around.

Now if I could just figure out why I have the urge to buy wine and make Muffalletta sandwiches.

She has escaped but I did not....

She is out, She is out, She is out.  She has escaped the horror that now surrounds each and every blood draw. Her bruises are solid PURPLE. She is giving herself two more shots a day.  Each shot = a bruise.  It is nuts.  I look at her bruises, and scars and the stretch marks from the prednisone.  It makes me so sad.

With each admission and each time the process becomes more complicated and hurtful and frustrating: she cries, she is sad and then we move on.   Today she needed to get out today so she could go to the Ruby Project class and do some printing.  Photography is a great thing for her right now. Great Distraction.

I, on the other hand had challenges and a couple fun things today.

 Did not sleep in;
Did arrive just as the donut lady was serving to the  SCCA floor;
Had coffee with Amber and Karen;
Missed rounds;
Met some new people with a 9 month old ALL baby, let broken heart heal;
Tried to take a nap but then quicker then you could say "Discharge"they were pushing us out the door; 
Dropped Mary-E at the house and headed for my root canal appointment;
Found a great parking place;
Was on time and there was very little paper-work;
Met with the nice doctor;
Could not convince her that a hand full of pain meds and time would make the excrusiating pain in my tooth go away;

OMG. 

Never go to the Root Canal lady without a fully charged I-Pod.  They drill and dig and then start again. Then they dig some more.  I never thought it would end. 

And when it did, it was a lie.  I am expected back for one, maybe two more chances for drilling and digging and ......

I will have a book loaded on my I-Phone, it will be charged and I will have really fabulous earphones. 

My ordeal will be over in a few weeks.  She is not so lucky.  Headphones fix my situation.  I wish  I could find the magic ones that would fix her.

  

We're Back in the Hospital Again, We're Back in the Hospital Again....

Should be sung to an old country western tune.

But I had such a great time in LA with my family and with the weather and with the rental car.  It was grand.  Dinosaurs, Saber Tooth Cats, (no tigers, they are different), Van Gough, Nixon, Melrose, Compton, Norma's Restaurant, Kindle Donuts, Nigerian Delegation, Quiet Spoken United Pilot that did not understand how we could let the Japanese have the first 787 and not an American Airline, Sabine and Stephan from Munich.  It was wonderful.

Wonderful ends and reality begins.

Above the cute toes, a swollen leg.  Clots in legs cause swelling.

She was complaining when I came home.  I looked, I assessed, we went to dinner.  Then we called Dr. Fassett and then we went to the hospital and then she had an ultrasound and then she was admitted and then.....blood drawn, lovanox (yet two more shots a day).

Lots of blood draws, blood clotting  before it can be tested....

Cancer is creative.  I have to adjust my thinking.  I have a six month old baby.  As baby's grow, they are unpredictable.  They grow and change and just as you have it all figured out, they change again.  I am 6 months through this process.  I should not be surprised when there are new developments.

Okay, I can't fix this situation.  So I shall concentrate my efforts on identifying the warbler I saw by Nixon's birthplace.

We Missed Elli Mae's 5th Month Birthday.

I don't quite get the "new birthday" thing.   Some parents  have cake and ice cream and celebrate every year. We are not that family.  There will be a celebration of sorts on January 24, 2013 but that is more of a

"Get out of Jail" sort of thing but then there are still some parol issues. I wonder when we will really be done.  

Six months brings a bit more freedom but there are still lots of "NO's"  This last admission for GVH sort of took my by surprise and deflated my "We are Rock Stars" attitude.

I am trying to be brave and optomistic and have planned a couple of short get-aways for myself but am also preparing myself for the need to cancell them.  I just hate the Uncertainy and may have to go to the Space Supply Store and buy some Certainty.

Fred told me before this process began that they would give Mary-Elizabeth her a chance to have her life back but we would not be returning to the same life. I told him we really wanted the long term insurance policy.

Every time we do something I realize how much has happened to her. Her body is so beat up.  Time will heal the scars, the holes, the marks.  She will become stronger and more active.  She will do more than wait for her friends to call and will call them.  She will get back into some sort of school before she returns to finish at Gonzaga.  It just takes time. 

It has been 5 months since transplant, 10 months since relapse, 7 months to go to year one. 

We can do this.  Now we need to get ready for the "real" birthday party.  4th of July the dogs go on the grill....

Bright Moments in Gray Days

Grey or is it Gray skies.  Rain, dripping.  Dogs sleeping. Child Sleeping. We are done doing errands today. 

Up at 5:00 a.m.
Out of the house by 6:00 a.m.
Off to Hospital for the "Line Pull".

Yes, they put her to sleep, and every so gently but ever so firmly remove the double Hickman from her body.  The one that has transported blood, platletts, IVIG, chemo therapy, fluides, more drugs then I can list, pain meds, anti-everything meds. 

The Line has been less willing to give up some of it's precisous fluids lately. It was more willing to receive than to reliquishe.  Since it is such a risk for infection the decission  was made to have it leave the building.

I was not in favor of it but she was so so ready to have it go.  She is in charge.  She has to have the IV's if necessary and blood draws.  I will not say a thing...

 Okay maybe one I told you so but not for now.  For now I will let her sleep off the side affects of the sleepy medicine.  I will get a couple of things done while it is quiet.

Oh, while she was recovering, I was conspiring with the secret committe to over take the caffiteria and food service.  I love a good conspiracy.

So, How Do the Docs do to Make Kids Feel Better?

Oh, they think it is with medicine and potions and magic thinking.  They think they come and look and order more tests and then ask questions and then guess and then.... the list goes on and on.

We went to the appointments yesterday.  My child was all in her " I don't feel well, I am mad as hell, I am not coming out from under this blanket" mode. Sort of like a bad stereotypical Indian.  She shuffled through the many appointments and refused to do more than mumble.

She had received her "appointment" schedule.  On the schedule was a date for her Hickman to be pulled out of her body and we hope it does not snap.  (yes pulled, don't ask I will explain later).  She told me it was scheduled.  I am still hesitant  and she was excited.

We had discussions with the docs, the nurses and others that were weighing in....  Then the magic words were spoken:  "We want to see you next Monday.  Then we can decide whether or not the line can come out.  You are not feeling well and if you aren't feeling much much better, we will have to wait a couple of months."

I often have to be reminded she listens to everything and hears some of them. 

We did a couple of errands and she was wrapped in her blanket sleeping in the car.  We came home and she went to bed.

About 6ish she came out.  She was hungry and ate some yummy Kansas City BBQ.  It was deemed wonderful and greatly appreciated. (Thanks Egglestons)  She then played with her dog and was up and talk-a-tive.  Mom noted she was feeling better and Meb agreed.  Magic

We did have fun with the the Doctors.   Brandon H was new to us but he was engaged in witty banter.  I am sure he will not forget us.  He was very thorough and had to be corrected in how to pronounce Tacrolimus.  We apologize but then we are aways poor examples of patients.  But remember we have been patients since before many of these doctors were born.

Dr. H then asked Dr. Jess Pollard to come bless Mary-E and further discussion.  Again we had never had her.  We told her were not as bad as our reputation but then she decided there had not been  C-Dif culture taken.  It is a culture of pooh.....  She promised they would send us home with a "kit" for collection.   Uh....oooh..... really.  I warned her I had a very active blog and she would now be mentioned and for ever known as the Doctor that wanted THAT sample.....  This comes under "it just never stops".

During the dressing change, the long bleeding session, and the waiting for lab results, I had a lot of time to talk with people.  I had a chance to relay the message from Mark Mendilow who heads the E-Feed Back Program.  He had sort of blown me off during our stay when I was trying to find something that Meb would eat from our award winning Chef Walter Bronowitz's kitchen. 

I asked him why he wouldn't meet with me.  He told that there was no reason.  He said the hospital does not feel food and healthy eating was a priority.  When asked why, he said that they have "other" priorities.  I was a bit shocked by his answer and asked why they did not care about the crap they fed the kids and he said, they don't care, they are not going to make any changes and you are wasting your time."

He did say they were going to remember the soda from the Cafeteria.  He was sure people were going to be unhappy about the change.  News Flash:  Children's Hospital, the place where they pretend to lead the nation in fighting childhood obesity, pop is going to be taken away.  Yeah.  Now that happened years ago in public schools.  The deep fryer is going away.  Yeah. 

Now what about calorie counts and carb counts in the cafeteria so people can make different choices.  What about really having whole wheat bread.  They serve the cheapest form of whole wheat from Fran's Bakery.  Here are the ingredients:

INGREDIENTS:
WHOLE WHEAT FLOUR, WATER, VITAL WHEAT GLUTEN, HIGH FRUCTOSE CORN SYRUP, YEAST, CRUSHED WHEAT, CONTAINS 2% OR LESS OF THE FOLLOWING: MOLASSES, SALT, VEGETABLE OIL (CANOLA AND/OR SOY OIL), DISTILLED VINEGAR, YEAST NUTRIENT (AMMONIUM SULPHATE), DOUGH CONDITIONERS (MONO-DIGLYCERIDES, SODIUM STEAROYL LACTYLATE, ASCORBIC ACID, AZODICARBONAMIDE, MONOCALCIUM PHOSPHATE), CALCIUM SULFATE, ENZYMES, CALCIUM PROPIONATE (MOLD INHIBITOR), SOY FLOUR, NONFAT DRY MILK.

The real bread has these ingredients.  Notice no high fructose corn syrup or a million and one preservatives. 

WHOLE WHEAT FLOUR, WATER, WHEAT BRAN, VITAL WHEAT GLUTEN, BROWN SUGAR, HONEY, YEAST, CONTAINS 2% OR LESS OF EACH OF THE FOLLOWING: VEGETABLE OIL (CANOLA AND/OR SOY), SALT, CULTURED WHEY (MILK), ASCORBIC ACID, SOY FLOUR.

This is a good example:  Walter's words and bread have no nutrition.

Seattle Children's Hospital should be a place of substance and not preservatives and High Fructose Corn Syrup.

Just Ickie News.

We watched hours and hours of Dark Shadows.  (Vicky Winters has been saved, Matthew is dead, Laura Collins is back and she is a Phoenix and stares for hours into the fire. Burke loves Laura and Vicky but is dating Caroline.  No one knows what is in the basement room.  Sam Evan's connection to the manslaugter charge is not clear but we are only on episode 144.)

Mary-Elizabeth's GVH is not gone.  She has to take a bunch of the steroids again and just cried yesterday.  Her line has to stay in, her appointments are more frequent, she has to stay on her immunosupresents longer and she is so so bummed.  I am bummed.  We are both just sick and tried of this right now. 

When this sort of thing happens, we both just crawl into a hole and re-group and re-tool and re-watch 1225 episodes of a long lots soap opera. 

It is just no fair.  Things were acting like life was good and returning to some sort of normal.  I was going to really really figure out the work thing, take care of my clients that are loosing their Mikkelborg home.  Start back to water aerobics.  I was cooking, and sorting and even going to keep up the laundry after Anne was so nice to do it ALL.

So that is all out the window.  My mind can only do so much when it is worried and anxious and afraid and sad and Oh my god I sound like a bad television pharmaceutical commercial. 

So what to do.....  Today I will hopefully be bringing Meb home and we will start the process again.  A little big less sure of good results and tapers.  Sometimes it is just what it is.  Thinking good thoughts and being positive and happy and all that crap does not work.  At least not today.  We are pretty good at making the best of things and we will get back to that place.  

This episode has just done the job of reminding us that it is a YEAR long program. She can not travel.  She can not be more than an hour from the hospital. She can not, she can not, she must, she has to....   

Okay. Enough pouting.  I will work on making my garden an even more special place then before.  My new, yet to be identified humming bird will be identified.  I will find more than two varieties of Saliva.  I will do some more purging.  I will do my laundry.  I will organize my pictures, I will.........

Oh, here was last night's dinner.  Chef Walter gets awards for this food. 

 Thank God for Wednesday Austin Pizza Night. 

They are going to use some of their toys today.

A small camera is going down her throat and into her stomach.   It is sort of an adult video game. They will a biopsy and some more cultures and then the decisions will be made.

They are looking for GVHD.  The girls have to be slapped down a bit.

Let me look into my Crystal Ball:  More prednisone, more beclamethosone.  More puffy hurty cheeks, more sleepless nights, more.......

When they said that this was a year, they meant it.  I am thinking we get to go home on Thursday. 

On the fun and cool side.  I am getting to educate lots of people about a long forgotten place, high on the hill, a place of ghosties and crazies and long pregnant silences... WOOOOOO,. Wooooooo, Woooooo. We have been watching endless BB episodes of Dark Shadows.  (Before Barnabas)  Sort of fun. 

We are also going to put together a visual for Chef Walter.  Maybe he can learn what a sandwich is if we send him a picture or make it a game. The game might be:  Find the Real Food.

Walter claims to be a member and supporter of the local food movement.  I love fruit that is grown in China, shipped to Thailand to be packed and then shipped to Seattle. 

How cool is that. We will play, find the real food with some fruit tomorrow. 

Less than 36 hours and it seems like forever.

and it is not that bad.  So she is sleeping.  I am thinking about all the bad things I am going to say about the white bread toasted American Cheese Sandwich she received last night.  I love seeing everyone. Talking to everyone. Trying not to think about what is going to happen.  


There are going to be lots and lots of tests and scans and cultures and scoping but it will only affirm what we all know.  She has to go back on to the Anti GVHD stuff again and most likely longer.  It just really really sucks.


I am having a hard time getting on top of it.  I did make sure the plants were watered. The birds fed. The milk box emptied.  The dishwasher started.  The dead food out of the fridge. The sorts of things that keep the day running.  (I did have to call my neighbor to make sure the dead food made it to yard waste.)  


While I am an expert at handling and managing and maneuvering and manipulating this place.  It takes so much out of me.  I feel the same way I did the day we left after 2.5 months.  How is that possible. 


I have to mix it up.  I am going to only say nice things about Chef Walter. 


All the containers the food is served in are compostable.


We hope the salad was washed.

The not quite toasted American Cheese was a pretty  color.  White bread has no nutrition and I am so sure that is what should be fed to children with cancer. 


See I can be nice. 

Maybe, Maybe, Maybe .......

The alarms still ring several times a day. 

7:30 am
8:00 am
9:30 am
12:00 noon

On and on, the last one goes about 10:30 p.m.  But it is better.   Drugs are going away.  Icky things and not so icky things.  Slowly the med list is getting shorter.  The hair is getting longer.  The cheeks are very round but are beginning to shrink.  The round tummy is getting smaller.  The appointments are still very early in the A.M. but they are fewer.

Meb walked around the block with the dogs.  She was able to go to Costco and we only came home with 30 individual back of chips. 

She has no more appointments this week. Her upset stomach that put a huge damper on a movie and some week-end events.  Let us just say that she will not be eating Bone Marrow Approved sushi will be consumed in the near future.  Her cold is leaving.  Maybe we have turned a corner.

I keep thinking I can make some plans but I hate to disappoint anyone.  I hate to say that we are going to do something knowing how fast things can go south.  ( Why do things go South and not North?)  I guess.  So we have no plans.

Maybe we will make a plan to make a plan in the morrow. 

If things don't go Northeast.

Healthy Food in Health Care Pledge

370 hospitals in the country have signed on to this initiative.  This is the list from the Northwest.  For heaven's sake Kootenai Medical Center is on this list!!!!! and they are in a much more economically challenged part of the North West. 




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Cascade Healthcare Community: St. Charles Medical Center, Bend, OR St. Charles, Redmond, OR Children's Hospital and Regional Medical Center, WA Evergreen Healthcare, WA Good Shepherd Medical Center, OR Group Health Cooperative, WA Island Hospital, WA Kaiser Atrium Cafe, OR Kaiser Sunnyside Medical Center, OR Kootenai Medical Center, ID Legacy Health System: Legacy Emanuel Hospital & Health Center, OR Legacy Emanuel Children's Hospital, OR Legacy Good Samaritan Hospital & Medical Center, OR Legacy Meridian Park Hospital, OR Legacy Mount Hood Medical Center, OR Legacy Salmon Creek Hospital, OR MultiCare Health System: Allenmore Hospital, WA Covington Outpatient Center, WA Good Samaritan Hospital, WA Mary Bridge Children's Hospital, WA Tacoma General Hospital, WA Northwest Hospital & Medical Center, WA Oregon Health and Science University Hospital, OR Overlake Hospital Medical Center, WA Providence Sacred Heart Med. Ctr. & Children's Hospital, WA Shriners Hospital for Children, OR St. Luke's Wood River Medical Center, ID St. Patrick Hospital and Health Sciences Center, MT Swedish Medical Center: Swedish Ballard, WA Swedish Cherry Hill, WA Swedish Edmonds, WA Swedish First Hill, WA Swedish Issaquah, WA United General Hospital, WA University of Washington Medical Center, WA October 26, 2011 Health Care Without Harm Press Release Contact: Eileen Secrest 540-479-0168 Hundreds Gather in Seattle for Healthy Hospital Food Conference Conference Reflects Growing Hospital Interest In Sustainable Food Sourcing, Less Industrialized Food System Seattle, WA — FoodMed 2011, the nation’s most important conference on sustainable food in health care, has wrapped up in Seattle, WA. Hundreds of hospital food service managers, nutritionists, dietitians, chefs, public health professionals, authors, suppliers, and growers gathered to share information and learn new strategies to develop sustainable hospital food services procurement and operations. The conference, sponsored by the Health Care Without Harm (HCWH) Healthy Food in Healthcare Program, is part of a growing movement in hospitals to serve fresher, sustainably produced food to improve health and to support a healthy food system. “This conference really demonstrates how food service professionals can do something locally that has a global impact. More and more hospitals are making changes to support a healthier and sustainable food system that promotes healthier people, economically viable and vibrant communities, and a healthier planet.” — Michelle Gottlieb, Co-chair Healthy Food in Health Care Program Health Care Without Harm “This conference really demonstrates how food service professionals can do something locally that has a global impact,” stated Michelle Gottlieb, co-chair of the Healthy Food in Health Care Program at HCWH. “More and more hospitals are making changes to support a healthier and sustainable food system that promotes healthier people, economically viable and vibrant communities, and a healthier planet.” HCWH’s Healthy Food in Health Care Program has been on the forefront of efforts to reduce the use of non-therapeutic antibiotics in animals raised for food. They have also worked to end the feeding of arsenic to chickens. In addition to serving fresher, less processed foods, many hospitals have begun composting, recycling and promoting farmer’s markets to staff and visitors. In 2010, the HFHC program launched Balanced Menus, an effort to reduce the amount of meat served in hospitals as an effort to reduce greenhouse gases and promote climate and human health. The First Annual Sustainable Food Awards were also presented during FoodMed 2011. Awards were presented to nine hospitals for excellence in sustainable food procurement, public policy and advocacy, food-climate-health connection; and to three individual health care clinicians who made the connection between our industrialized food system and public health. [Note: for a list of these award winners, visit the HCWH press release of September 27.] HFHC also released its 2011 Menu of Change Report at FoodMed 2011, which included results of a survey of hospital food practices, from which the award winners were chosen. “I think this is the most energized and inspiring group of people I have been around,” said Lucia Sayre, co-chair of the HFHC program and Co-Director, Bay Area Chapter of Physicians for Social Responsibility. “The attendees can’t wait to get back home and put what they’ve learned into practice. FoodMed helps seed a new cadre of leaders and future award winners. That is what is so important about this conference—we are inspiring hospitals to demand healthier and sustainable food from their suppliers, and become advocates for a healthier food system.” Participants learned to incorporate sustainable and nutritious food purchasing at their facilities, and heard about cost effective strategies that emphasize health concerns that meet the unique needs of healthcare and facilitate the development of healthy communities. Presentations were geared towards healthcare providers, dieticians, hospital food service directors and health care food procurement and distribution professionals. Several pre-conference activities took place, including a farm tour and hospital cafeteria tour. Keynote and plenary speakers at FoodMed 2011 included Melinda Hemmelgarn, a registered dietitian, “investigative nutritionist,” and award-winning writer and radio host, better known as “the Food Sleuth”; Oran Hesterman, Founder, President and CEO of Fair Food Network and author of FAIR FOOD: Growing A Healthy Sustainable Food System for All.; Gus Schumacher, Executive VP, Wholesome Wave. Heath Care without Harm, an international coalition of more than 500 organizations in 53 countries, is working to transform the health care sector, without compromising patient safety or care, so that it is ecologically sustainable and no longer a source of harm to public health and the environment. To learn more about HCWH's work, visit our website at www.noharm.org, our YouTube channel at HCwithoutharm, and our twitter feed at hcwithoutharm. Don't you think it is ironic that during the very time I was trying to address the issue with Children's Hospital there was a meeting IN Seattle on the very issue of how food was an important part of health care but I bet on a single person from Children's dietary was present. I bet this was not on the menu.

In Boston they did a Hospital Chef Cook-Off. I wonder how Chef Walter would do.

I am starting 
to get some ideas..........

http://www.boston.com/jobs/news/jobdoc/2011/10/hospital_chefs_sick_of_institu.html?comments=all