Tuesday, November 29, 2011

Aging Wonder Dog

Brisco the Wonder dog is getting old. He doesn't really look old, but things are changing. He sleeps a lot. He is very deaf and is constantly shocked when someone approaches from out of his sight line. He doesn't hear his old nemises, the mailman, approach the house or drop the mail in the slot, but will bark wildly if he sees him pass the house. In fact, he barks at every passer by he sees out the front door or window as if to let them know he is still a force to be reckoned with.

He is still protective of Maggie. The nurses are allowed do their work in Maggie room, but as soon as they come out of her room he lets them know that they are now in his jurisdiction. This has been going on for a couple of years but now he actually has to SEE them exit the room with Maggie because he can't hear them coming.

One new behavior is to bark at me every morning as Maggie and I get in the elevator to go down to meet the bus. It's our new routine Once Maggie is all ready to go, we head out for the deck and approach the elevator. Brisco starts his incessant barking as though he's Lassie and Timmy is down a well. It's 7:30 in the morning and I'm sure the neighbors really appreciate this. I wave at him to be quiet and get into the elevator as fast as possible. He barks wildly until he remembers to run downstairs.

He's frantic as though we are in danger. I thank him for his concern and say it's an elevator, we are ok. (Because reasoning with a barking dog is always helpful.) He barks as we starts to descend and I gesture for him to run downstairs to meet us. He is always waiting at the bottom relived when we arrive.  I cannot figure this one out at all. We have had the elevator for 6 or 7 years now, and we get in it every day. Interestingly, he doesn't bark when she ascends, only on the ride down. As a middle aged woman, I know gravity is the enemy, but how does the dog know that?

Of course Maggie finds this hilarious. She starts laughing,which makes her start coughing and needs suctioning. I am in the lift standing on my tiptoes to squeeze in beside Maggie's large wheelchair and all the equipment trying to free up the suction tubing with one hand and gesturing for the dog to come downstairs with the other.  

Once that harrowing ride is done he is happy to see us and runs for the basement door. When he finds it closed, as he does very morning, he looks at me very concerned and starts barking again. Maggie starts laughing again, which means more suctioning. I look at the dog and even though he can't her me I tell him, "Don't worry, there's a door knob. I have opposable thumbs and I can open it."  He is delighted when I open it and runs to the closed garage door and starts barking as if to say "HA! Another obstacle. Can you figure this one out too?!?!?!?"

Maggie laughs. I push the button to open the door and Brisco calmly walks out if front to sniff around and wait for the bus. To the passer by he looks like the picture of a the perfect family dog, not the nut case he has become.

Monday, November 28, 2011

Sneaking around downtown

The school bus was a welcome sight this morning. Maggie has been home for five days and we both need a little change in the routine. She will have fun with others and I can get some stuff done around here.

The weekend was great but busy. We had family over Thursday and Friday and part of Saturday. We all consumed Turkey in various forms. Yesterday everyone was gone. We headed downtown early for our annual stop at the Hyatt Regency to view the Christmas decorations and ride the glass elevators. Maggie loves those elevators.  They overlook the beautiful atrium lobby which is 17 stories high and adorned with lights hanging down several stories from the top.

We have done this for several years now and Maggie starts laughing as soon as we enter the building. Imagine our disappointment, then, when we discovered the Hyatt had installed security measures to keep out the riff raff (us). Now you had to have a room key to access the elevators.

We considered asking the concierge for permission because people rarely deny reasonable requests for Maggie.  Of course if he said no, then where would we be. Being the criminal masterminds we are, we just waited for a guest with a key. That took all of about 30 seconds. A family arrived and were happy to oblige. Sadly they were only going to the 6th floor. However another couple boarded on the 3rd floor. They were a bit grumpy and didn't appreciate the crowded elevator. We just gave a smile and tried to look like we belonged. They put their key in for the 16th floor. SCORE!

Maggie got her elevator fix and was delighted.

We left there and checked out the Holiday Ice Rink in Justin Herman Plaza

Then we walked past the Occupy SF encampment and saw this Barbie Dream House tent.

We figured this must be the high rent district or the encampment - even the 99% has a 1%.

Maggie just wants to know if it has glass elevators.

Friday, November 25, 2011

The morning after

The obligatory shot of the turkey and a picture of the colorful vegetables and sweet potatoes.

Thanksgiving was great. Family came here, which is perfect. It's just too difficult to take Maggie out of her element. I would much rather do the cooking and prep work than try to cart her off somewhere. Everything we need is here and set up for easy use. We needed it yesterday as Maggie needed an oxygen boost for a bit mid day. Not sure where that came from because she seemed healthy. Maybe something is brewing. 'Tis the season for illness as well as shopping, holidays, family, eating, etc.

Just to complicate my life, I did start the day out with an unnecessary stressor. I offered to bring the turkey over to my moms house and put it in the oven for her. The problem was that both turkeys were going to take five hours to cook and both of us were planning to eat around three. I was waking up in the night worrying about how to get it all accomplished in a short widow of time. My plan was to get mine stuffed and in the oven and then race over to my mom's house to do the same thing. That was going to take precision timing.

I made the stuffing on Wednesday - a ton of it to stuff two big turkeys. I had the potatoes peeled and boiling and the cranberry sauce all cooked by 7:45 and then had to get my turkeys.

I always order my turkeys from Arguello Super (home of the World Famous Turkey Sandwich). It's just a couple of blocks form here and the turkeys are fabulous. The best part is you can pick it up Thanksgiving morning, meaning no ridiculous overcrowding in the refrigerator Wednesday night. I arranged to pick up two turkeys, one for us and one for my mom. I was standing at the door when the store opened at 8AM. These are big birds, 21 and 22 lbs. I knew I couldn't carry them home so I brought my old lady shopping basket. I put my 43 lbs of turkey in it and wheeled it home. .

Really sorry I don't have a picture of that to share with you.

My bird was in the oven by 8:30 and I headed over to moms. Steve called while I was en route. He was exasperated. Ms. Maggie was going crazy and he couldn't get the talker to work. That was making her crazier and she was trying to pull her trach out. I tried to talk him through the fix, which I can do in my sleep, but I just know it, I can't explain it without looking.  I was sitting in my mothers driveway trying to explain it and finally said, "Look, if I could hang up and get this turkey stuffed and in the oven, I could be home in 25 minutes." He basically had to sit next to her and hold her hand down until I got home. Come to think of it, that episode should have been a warning that she didn't feel well, because that is definitely not her norm.

I stuffed mom's turkey and put it in her oven, gave her a kiss and left. My sisters and brother were headed there for dinner and one of them would get it out when it was done. I was back home by 9:45, fixed the dynavox in about 30 seconds. (Steve was on the right page to fix it, but we were describing different parts of the page to one another and didn't realize we were talking about the same thing.)

The rest of the day went off without a hitch. The food and company were excellent. The dishes are done. The 49ers lost, but they are still 9-2, so even that was palatable. The nurse arrived at 11:00PM and I fell into bed. And then woke up at 4:30 AM and never went back to sleep. I got up at 5AM and had a cup of tea and said goodbye to Tim who had to go to work early. Now it's 6:30 and I'm out of gas, but the nurse leaves at 7.

The term "long weekend" is taking on new meaning. At least there are leftovers.

I need coffee.

Wednesday, November 23, 2011

It's Thanksgiving. I will be preparing food all day today so that tomorrow is less crazy. Things are not perfect but they are good and I'm thankful for that. I wish Eddie was going to be here, but I'm thankful he and Grace will be together. I wish I could see my mom, my siblings and their families, but I am thankful to have Steve's family coming. I wish the table were already set, but I am thankful to have everything I need to set it.

I am also thankful for:
family, friends, nurses, therapists, teachers, classroom paras, bus drivers, administrators, doctors, my dog, my health, music, crisp fall weather, my city, my house and all the crap inside of it, my dream car (a wheelchair van), turkey,all the trimmings. an over sized refrigerator that is stuffed to the gills, Maggie's joy and her attempt to make noise when she laughs, the Internet, television, books, the smells the house will have all day tomorrow, good wine, average wine, leaves for the table, Thanksgiving colors, people who read my blog, my sons, Eddie's girlfriend Grace, my husband who still makes me laugh, and laughter itself.

Most of all, though I am thankful that no one at my Thanksgiving table plans to go shopping at midnight and that we won't lose one holiday preparing for the next.

Off to chop!

Tuesday, November 22, 2011

Do something good

Why is it only the bad days that stick in our collective memory.

November 22. It's STILL one of those days. In 1963 I was in the second grade lined up (arms distance) to come in from recess at Our Lady of Mercy School when Father Power came out of the Rectory and said something to the nuns. I remember one nun started to cry. I had never seen a  nun cry and was amazed by that.

We filed inside and learned the President Kennedy had been shot. We watched the television on the large rolling stand in the classroom. When they said he died, they sent us home. I remember walking home in an eerie quiet. There were no cars on Southgate Avenue, something I then thought of as a busy street. I remember thinking my dad was going to be mad about this, because when you are seven years old your entire world is your parents world.

 I don't know why I was walking alone, not that I was concerned about that. It was a calmer time and seven year olds walked home alone all the time. I just wonder why my sisters weren't with me. Three of us went to the same school. Maybe they sent the little kids home first. Funny, I remember some things so crystal clear and cannot explain others.

What amazes me is that you have to be about my age to even remember that day at all. It was day that changed everything and no one under 50 could possibly remember. Weird.  My parents spoke of Pearl Harbor but that was ancient history when I was a kid. Same effect here.

There have been other days. Everybody remembers where they were when the space shuttle exploded and, of course, nothing can compare to September 11. But that was 10 years ago and probably anyone under 13 doesn't remember that. Time marches on. New things happen to define our world.

Maybe the next one will be something good.

Do something good today.

Sunday, November 20, 2011

Home again home again, jiggity jig

Maggie is home and fine. We came home Saturday around noon. There was no reason to stay. There was really nothing from which to recover. After all that it was a bit of a non event. The highlight of the stay was a visit from Tim on Friday evening. He climbed right in bed with Maggie carefully moving tubes and wires.

For the past 18 months we have lived under a cloud. Maggie had a life threatening condition. Maybe it had been there a long time, maybe it was newly formed. It was a time bomb and was going to effect her life. It certainly explained her continuous difficulties and symptoms that would not go away.  We waited and waited for something to happen, but gathering all the needed specialists took months. Finally we had a game plan, but then the surgeon declined to get involved. Back to square one, a little more bruised and frightened and more than a little angry.

We found other surgeons who proposed a minimally invasive procedure that might help. We jumped at it. We knew it might not work, but we had to give her every chance. I worried that we were going to cause more harm than good. I worried that it would not work. I worried that we would get even worse news. I worried that we were playing with fire. I fretted and wondered but decided to proceed.

Everything was arranged around this surgery. We arranged it to happen after our German visitors left because that was just too much of a cultural exchange. Once we had a date, everything was focused on the weekend. Though he has gone every year since I've known him, Steve declined tickets to the Big Game (Cal/Stanford for those of you not in the Bay Area). I declined a couple of invitations to things so we could focus on Maggie. Of course we canceled the school bus for this week so Maggie could recover from this delicate procedure.

The procedure was Friday. They went in and were done in 40 minutes. The condition did not exist. There was nothing to fix. I guess that's good news, but her symptoms will not improve because this problem is not the cause.  The doctors who declined to help her any more made that decision on erroneous information. All that anguish and anger were for nothing. I am more than a little irritated.

It's Thanksgiving week and I am trying very hard to focus on the grateful part of this story. I am very grateful that Maggie does not have this condition. I am very grateful for the surgeons at Stanford who were willing to go in and try to fix it and let us know it wasn't even there. I guess I'm grateful to know who I can depend on when the going gets tough and who will walk away.

I'm also grateful that it rained so hard last night and Steve didn't mind watching the Big Game from the living room while he folded laundry. I'm grateful for the uninterrupted sleep I got Saturday afternoon and evening even though I missed  the two events.. And even though it's too late to arrange for the bus this week, I am grateful that Maggie can go to school on Monday and Tuesday.

Mostly I'm grateful that it is over and Maggie is fine and that black cloud that has been hanging over her head for 18 months is finally moving on. Or was never there.

I'm grateful the worst thing to come out of this surgery is frustration.

Friday, November 18, 2011

Checking in

Maggie's procedure went well. We are sharing her bed in the ICU, but she's a total bed hog. She's still a bit Dopey from the drugs, but I'm Grumpy so we complement each other nicely.

Thursday, November 17, 2011

Sweet Sydney

Maggie received a gift in the mail yesterday. That's a fun thing for a random Wednesday. Of course Ms. Maggie tends to receive gifts fairly often. This is her third gift in a week. Her aunt and uncle sent a t-shirt from Notre Dame University. She loves it. Over the weekend her brother Eddie gave her a cool Felt Bicycle shirt, so Maggie looks very cutting edge. All three gifts were great, but the one on Wednesday was very touching.

She received a book from her cousin Sydney.

Sydney is actually the daughter of Maggie's cousin Kelly. Kelly is the first of the 20 grandchildren and Maggie is among the last.  The age spread is just about an entire generation. Sydney, the first of the NEXT generation  will be 11 next month so she is much closer to Maggie's age. Sydney and her family live in Montana and we've really only met the kids, including Sydney, a couple of times. When they come to California they naturally go visit their grandparents in LA not crazy great aunts and cousins in San Francisco. I did write about a visit they made her a couple of years ago. That was a great time. (Maggie World: Big Sky Invasion)

Sydney sent Maggie a book entitled Out of My Mind by Sharon Draper. This book is a novel for kids about a girl very much like Maggie. We plan to read it to her while she recovers from her surgery tomorrow.  The book itself is great, but the sentiment is even better.

Sydney wrote this inside the cover:

Dear Maggie, When I read this book I thought of you! The main character is Melody. She is sweet, kind, loving and SMART, just like you. Love Sydney.  

Then she decorated the page with a Glittery version of "MAGGIE" (hard to see because it's neon green)

Maggie grinned from ear to ear when she saw it and ran her fingers across the glittery letters.

 I almost started to cry. It was so heartwarming to receive this and to know it came from Syd's heart, which is obviously quite large. Maggie is very lucky to have cousins like Sydney and her sisters who don't let little things like time and distance interfere with thoughtfulness and family.

I wish I could think of a clever book to send back but I am unaware of a book with a heroine so sweet and generous and thoughtful. If Sydney is indicative of the next generation I think we can all relax a little bit about the future.

Monday, November 14, 2011

No guts, no glory

I need to lighten things up.  Just so you know, we are not hanging crepe around here. Life goes on just as before. We did go to a different surgeon and Maggie is indeed having surgery on Friday. We are hopeful it will fix her problem and allow her to ward off pneumonia and bronchitis this winter. Time alone will tell. We are delighted that she is getting a chance. That's all we wanted.

I am flabbergasted, disappointed and angry at the effort it took to get here. This is not a game. But now we are here and we are moving forward.

Today we met with the new surgeon. All of our questions have been answered to the extent possible. We are on  some uncharted waters here. The surgery itself should not be problematic, but the success of the procedure is in question. Time will tell.

We are still the immature goofballs we always were. Take for example the way we left the exam room. We had to wait quite a while and both Steve and I were looking at the poster with the entire digestive system on it because just when you think you understand anatomy, you are wrong. We laughed at each other for being such nerds trying to figure out how our guts work.. I said, "Hey, No guts no glory."

 That really sums up this whole episode and Steve liked that and decided we needed to leave the sentiment on the poster. Not defaced, mind you, just a post it note.   Here's the poster and a close up.

I wonder how long it will take them to notice.

Quantifying Quality

This is something I've wanted to address for a long time, it is an important issue and I'm not trying to solve it, just to address it. 

(image grabbed from http://www.utoronto.ca/qol/)

People come in all shapes, sizes and colors. They have many different religious beliefs, political beliefs, socio-economic situations, education levels, talents and abilities. They live in cities, suburbs, small towns and rural areas.  I am an overweight middle-aged middle class white woman with a graduate degree living in the middle of a big City. Do I have the same interests as a slender young Asian male with a high school diploma living in the suburbs? Probably not. Is my life better than his? I might say yes. He might say no. We would both be right because neither of us is in a position to judge the quality of the other person’s life.

The quality of an individual’s life is subjective. It is unique to that person. Nevertheless, quality of life is measured all the time. These measurements use objective criteria and apply it generally to make a determination. We hear Magazines and surveys rate places on their “quality of life” score. For places that seems to be a combination of the weather and the number of universities and opera houses in the vicinity. The objective criteria, the weather and the arts – are predictors of the quality of life, because presumably most people want nice weather and access to the arts. However, if you like rain and hate opera that measurement does not mean much to you. Maybe you choose to live in a place because you ran out of gas in that town and found a job there. Turns out the people were nice and you made a life there. You still decide what brings quality to your life.  

Applying the objective criteria in a magazine survey is harmless and fun to read – especially if your area makes the “best” or “worst” lists. There are other areas, though, where it can be dangerous. When individuals or institutions decide from an objective standard that your quality of life is not good, and they have the power to affect your life, the results can be disastrous. I am talking, of course about healthcare.

 There are legitimate “quality of life” issues in health care. Healthcare providers and patients will address quality of life issues in making healthcare decisions. If a treatment will take pain away a patient’s quality of life may improve. It is an important factor for patients to consider in deciding whether to undergo treatment. It is the patient’s unique life. Only the patient knows what the quality is and what will improve it.

Yes. Some things are obvious. Less pain will increase almost everyone’s quality of life and it is safe to make that assumption. Many things are not so obvious. Other circumstances will have an impact.  Taking the drivers license away may have less of an impact on the quality of life of a person who lives in the city with easy access to public transportation than it will to a person who lives alone on a farm.   It depends on the individual. It depends on the life they are living.

I can safely say that most people would not want to be in Maggie’s situation. She is totally dependent on others for every need. For most of us that would be a devastating and unacceptable change in our quality of life. For Maggie, though, THIS IS HER LIFE.  It is the only life she has ever known; and I can tell you first hand, the quality of her life is different from yours and mine, but it is great. She is happy, loved, comfortable, pain free, smart, educated, engaging and entertaining. Often times I envy her for the joy in her heart.

People do not know that to look at her. They do not see the joy (unless they wait 30 seconds). They see the wheelchair. They see the trach. They do not see Maggie. If they did, they would know. Maggie is joyfully living the life she was given. She is living it to its greatest potential. If that is not quality, I do not know what is.

 There have been several instances where doctors do not want to treat her based on her quality of life. They measure her life by their own subjective criteria and find it unacceptable. It is snobbery. It is bias. It is discrimination. Then Maggie does something to surprise them. She smiles or makes a crack on her dynavox and they look at her from a different angle.  Generally, it takes them about 10 minutes to realize the mistake they have made. (The braying mother in the background may help or hurt – never sure which)

Recently and for the first time one doctor did not change his mind. Maggie needs surgery to address a life-threatening problem and he refused, requiring us to change doctors. He decided Maggie’s quality of life was too low to try to save. He made a decision that Maggie is not worth it.  

He is wrong.  

Saturday, November 12, 2011

Welcome to adulthood. Now go away.

Several things have happened over the past months that I have not addressed because they were too raw or too unbelievable. I wanted to think they were isolated incidents; or perhaps examples of extreme bad manners or lack of sensitivity or respect on the part of individuals. But they were not. 

I have to face facts. Maggie is a problem to the system and the system does not mind letting me know that.

This was summed up best by an inelegant presentation I went to regarding transitioning care from the pediatric service to adult care. Obviously this is an issue that interests me as Maggie approaches her 18th birthday. The individual was speaking to a group of parents – and he KNEW he was speaking to a group of parents. As he started his presentation he spoke of the disjointed way transition issues are handled now and noted:

“It’s problematic because these children are living longer.”  

My head snapped up. I had been looking at his handout and thought I heard him wrong. Another mom at the table quickly called him on the remark. She said, “it is NOT problematic, it is wonderful and amazing and you are talking about OUR children.” He was unfazed by the correction.  

Bending as far as I can to give him the benefit of the doubt, I believe he was trying to say there is nothing formal in place because medical advances outpace the infrastructure and patients (like Maggie) survive today where they didn’t even 10 years ago.  With that extremely generous interpretation I have to agree with him. But I also believe he spoke the truth. It is problematic for the system that these children survive and the fact that a representative would say that to a group of parent demonstrates the callousness of the system.

I spoke up from my end of the table because my daughter is the oldest and perhaps most complicated (or in the eyes of the system “most expensive and most problematic”). I told the group that I have witnessed the shift first hand. While doctors used to marvel at Maggie’s history and her charm and intelligence, I now get lectures about quality of life*, and not in a good way.  

In denying to undertake a surgical procedure* that Maggie needs, the surgeon said to me,  

                “you didn’t expect her to live forever, did you?”  

Well, no, I suppose I didn’t, but (demanding parent that I am) I do expect her to be given every chance to live as long as she can. 

Maggie has become a burden to the very institution that saved her life over and over and over again. Medical technology and advance have been able to save the lives of these children, but cannot make them function as others do. Still, Maggie functions very well.  She is living the life they saved. Instead of patting themselves on the back as they should, the system is turning its back on her. Talk about problematic. 

To say this makes me sad is a wild understatement.

*The concept of “Quality of life” deserves it own post and not ALL doctors or institutions feel this way. My amazing pediatrician does not and arranged a second opinion. Maggie is having surgery next Friday. More about that to follow as well. 

Thursday, November 10, 2011


There are a couple of things that have happened lately that have been rattling around in my head. They are of the deep and meaningful variety so I am trying to get to a point where I can convey them appropriately. I think I have a framework now, and will start posting about those in the next few days.

In the mean time, my promise to list my gratitudes needs a boost. Today I am grateful to all of you. I  want to say thank you to all of you who read about our lives. I was just looking at the stats for this blog and there are over 50,000 page views since Blogger started tracking these in 2009. I know that's not all from my mother and I am grateful that people give us a little of their time. An old friend called me yesterday and told me that I make her laugh or cry when she reads this.  I love it when I learn that someone is reading and knowing its having an effect on someone is even better.

And just so I don't forget tomorrow. Thank you to all the Veterans out there who have served and sacrificed so that I can have the freedoms I do.

Wednesday, November 9, 2011

Today we say Auf Wiedersehen to Vanya and Betty. Their stay has come to an end and they are headed back to Germany this evening. It has been a great three weeks and I'm glad they stayed with us.

Betty asked if Maggie could come to Germany when the San Francisco kids come in May. I wish that could happen, but it's just not possible. (But I am giggling at the thought of going through TSA security with the suction machine and the cans and cans of her food pleading ,"No, really sir, she needs more than 6 ounces of liquid for the 10 hour flight."  I think I would suspect us because it's too ludicrous to be true. )

The morning madness will settle back to its normal overdrive level. We have been in super duper overdrive adding lunches and a ride across town to the already unbelievable mix. The other day I was making lunches and maggie was banging on her bed  which is her way of "calling" me. I said, "just one minute Maggie. you are NEXT on my list." I heard the night nurse start to laugh because Maggie made a face. The nurse said, "oh no, she did NOT like that. This girl needs to be FIRST on every list."

Other than the mornings, though this has been fairly effortless. We were lucky to get such lovely your women to join us because they made it so easy.  

We will miss them and wish both young ladies well as they travel home to their families and friends. I hope they know they have a little of both right here in San Francisco if they ever want to.

Monday, November 7, 2011

Weekend update

Good thing we gained an hour this weekend, because we were busy!

Any change in the schedule causes a ripple effect. When the whole country shifts back an hour it takes several days for us to catch up. Add in our busy weekend and forget about it! Maggie fell asleep an hour early last night and by the time the nurse arrived at 11 all of us were sound asleep in the living room.

My posting has been slow of late. We have been very busy entertaining Betty and Vanya. In fact I think I'm using the extra hour to write this. On Friday night we went out for Chinese food, Saturday we went to the Legion of Honor to see the Pisarro exhibit, they toured Fort Point and then we had a picnic at Crissy Field. The rain was threatening all day, but held off

Yesterday we went to Ghiradelli Square. We felt it was out obligation to show our guests the Chocolate factory, or the remnants of it.  We hadn't been there is a very long time. I remembered why when we arrived. It its the LEAST accessible place in San Francisco. Multiple levels with one elevator that  comes four steps above ground level - WHAT??!?!?!.You have to call a security guard to unlock a lift to get up those stairs to get to the elevator that takes you to a bunch of shops that cannot fit a wheelchair. Even in the chocolate factory itself you could not maneuver with a chair. I'm sure they don't get many in there, but I can tell you there's a reason for that. All in all a colossal fail.

We wandered around Fisherman's wharf and stopped in at Cost Plus. It's always important to take visitors to our city to a store that specializes in imports from around the world, including Germany. Oops. Still they had fun.

Maggie loves to use her dynavox to say hello to each of them and they have become very adept at responding, even when she says hello 20 times. Maggie has them well trained.

It is hard to believe they will be leaving us in a couple of days and things will go back to "normal." There are still so many sites I want to see!

P.S. I forgot my gratitude for today. I am thankful that this experience has been so positive - but I am also thankful that tomorrow is election day and all the phone calls and junk mail will stop for a while.  If you are in SF., don't forget to vote tomorrow.

Thursday, November 3, 2011

Too Much Reality

Many years ago, a film crew was following various doctors around for a couple of weeks for a documentary on health care. The plan was for a two or three-part show on PBS featuring actual situations in children’s health.  I suppose it was a reality show before the genre existed except, of course, there were no prizes or gimmicks.  One of the doctors they followed was our pediatrician, Eileen Aicardi. Since we were at least weekly visitors in those days, they asked if we would agree to allow them to follow Maggie.  That meant I agreed if anything happened they could come and film it. I said sure, why not.

Something did happen. Maggie got very sick with pneumonia and had to be hospitalized.  Pneumonia is one of those things that gets worse before it gets better. I thought we could handle things at home, and we did for a while, but they got out of control pretty quickly. I had been up all night with her and knew I was in over my head.  I called her doctor about 6:30AM and told her we were going in.  I could not drive her by myself because she needed hands on care. Our choices were either to call an ambulance or wake the boys and have Steve drive us.  It was a Saturday morning, so we had to drag the boys with us

 By the time Maggie was in her hospital room it was an “all hands on deck” situation.  Maggie was in the bed, the respiratory therapist and I were working feverishly to keep her airway cleared and keep the oxygen on her. Steve was keeping the boys in line and arranging Maggie’s equipment. The film crew arrived with the doctor and started filming everything. I really did not care; my focus was on Maggie. Besides, if they wanted reality, they were getting it.

The small hospital room was very crowded. Maggie’s wheelchair takes up a lot of free space and there were at least a dozen people in there. The boys were young and they were playing with the controls on the empty bed next to Maggie’s, oblivious to all the action. (They were already old hands at this stuff). In addition there was the cameraman and three others from PBS, the doctor, the RT, the nurse, the charge nurse, Steve, me and of course Maggie.  We were suctioning, repositioning, fixing the oxygen and comforting Maggie every second. It was not a pretty site.

We had been working like this for about 45 minutes when suddenly the absurdity of the situation hit me. I was exhausted and worried and there were cameras, strangers, and more activity than I could even process.  I looked up as if I saw it all for the first time. The charge nurse, who I knew, caught my sudden realization. She was behind the camera. She grinned at me and started waving a lipstick in the air as if to tell me I had to look good for the camera. I started to laugh and had to turn away.

When the show aired on PBS Maggie and I were left on the cutting room floor. This did not surprise me. I cannot imagine it made for good television.

 If only I had grabbed that lipstick.

Gratitude: I am grateful for the nurses who have cared for my daughter under the most extreme circumstances and cared for me in the most unusual ways.  

Wednesday, November 2, 2011


November means Thanksgiving. Thanksgiving means gratitude. I think it's time for a gratitude adjustment.

I am grateful for so many things in my life large and small. I'll start with a few: my healthy sons and their sense(s) of humor, my tough and resilient daughter who amazes me every day, my husband and his creativity, my family, close and extended, especially my sister who is celebrating her birthday today, my city which is beautiful and warm as November begins, my health, my exchange students for their energy and cheerfulness,  and so many other things.

So just for today no complaining about insurance companies or access or any other problems. That will resume, believe me, but it will be followed by a daily gratitude, just so I can remember to make the most of November.

Tuesday, November 1, 2011

War on Drugs

There's a wind blowin and I live in a house of cards. The powers that be are messing with my imperfect but functional and very tenuous setup for getting Maggie what she needs. Somebody needs to FIX THIS and SOON!

About a month ago we learned that our health insurance carrier Anthem Blue Cross was Walgreens have not agreed to new contract terms and when the current contract expires on January 1, 2012 we can no longer get our prescriptions at Walgreens. 

WHAT?!?!?!? This cannot be.  I have been using the Walgreens at California and Spruce streets since Maggie was born over  17 years ago.( I used them before that too, but just for the occasional prescription we needed when we were a four healthy person household.) I know all the pharmacists and assistants and over the years have gone through more techs than you can count. I know that I can get a refill when I need it, even if it's impossible to get a hold of the doctor. They know all 16 of Maggie's medications and now have most on an auto-refill basis. Just this morning the night nurse told me we were out of Atravent and I said, that means there is a box sitting at Walgreens waiting for me to pick it up. And indeed there was.  It works.

Walgreens is pretty much the only game in this town. San Francisco is 49 square miles and by my count there are 63 Walgreens locations. (count for yourself here). When I talked to Anthem Blue Cross about this today I asked where we are supposed to go. He suggested Target - nope there isn't a single one in SF. CVS? I know there's one downtown, but it's not realistic to drive 5 miles and pay an arm and a leg to park every time I need to get some meds because it can be three or four days a week.  Anthem does have a mail order service for prescriptions, but that requires using one service for her "specialty medications", a separate service for her regular medication and a local pharmacy for her antibiotics and urgent care meds. I cannot have three separate pharmacies.It will be impossibleto keep everything straight.  I already have three medical supply companies to deal with, but if somethign screws up there I can purchase most of the stuff over the counter. I can't do that with regulated medications. Wehn he asked if I was interested I said, "No. That makes my life more complicated and it's complicated enough already."

I don't know who is at fault here, but one of these two giant corporations needs to blink so I can  keep things straight and get Maggie what she needs without increasing the burden.  I want to continue to get her drugs from my neighborhood pharmacy, even if it is part of a giant corporation. I know all the cogs in that part of the wheel. I don't know a single cog in the Anthem wheel, which may be by design. Every single time I have to deal with them I have to re-invent the wheel. For that reason alone, I believe Anthem needs to blink. Walgreens actually provides some service to the policyholders along with the medication. That's a concept Anthem seems to have lost along the way. 

This is a hassle for every anthem Policy holder that uses Walgreens and I'll bet in San Francisco that's 99% of the policy holders. FINALLY Maggie's with the majority on a health issue.  

It's time to occupy someplace because we ARE the 99%.