First, Have some charm

The basic tenet of the Hippocratic Oath is "First do no Harm." Doctors are there to help, not cause more damage. Perhaps that needs to be applied not only physically, but emotionally as well. Hence, the title of this post, "First, have some charm."

Someone needs to teach doctors some tact and manners. Not all of them, of course, but it only takes a few bad apples to make the whole bunch seem spoiled. Doctors are smart. Doctors are busy. But doctors are caring for people at their most vulnerable moments and because they are smart they need to remember that, no matter how busy they are.

My husband and I are the first responders for issues involving my father in law. He lives closest to us and that's what makes the most sense. We are happy to do it and he is very appreciative. Our past experience often comes in quite handy because the similarities between managing Maggie's care and managing my father in law's care are astounding.

Maggie as a disabled child was often ignored by the doctors even though she was the patient. Not doctors who knew her, of course, but doctors who didn't, for example those in the emergency room, or young residents when she was in the hospital . They would talk only to me and not even attempt to engage her. Obviously I spoke for Maggie so that was somewhat understandable, but a comforting word or pat on the arm would have been nice, not to mention the courtesy of telling her the plan. They assumed she didn't understand, which was wrong; but even if she didn't understand, take the time to speak comfortingly and engage your patient. Generally I held my tongue because it was easier. I am a big believer in the adage, "you catch more flies with honey."

[Note  all of Maggie's former medical providers just fell over laughing at that. I was not always the nicest person in the world, but I really did let a lot of little things go, so I could save steam for when I really needed to blow my top.]

The same thing happens with my father in law. He too is now disabled, but the issues in this case seems much more age related than disability related.  This morning he was taken to the hospital from his assisted living residence. (He is already back at home and is fine.) Steve actually arrived at the hospital before his dad did. Steve learned from the paramedics that Dad was ok - in fact they didn't think he needed to be transported to the hospital at all. (Separate issue altogether).

Shortly after arrival the young ER doc enters the very small room with my father in law right there awake and alert and probably not even needing to be there. Instead of finding out the situation he immediately starts talking to Steve asking, "How far do you want us to go? what is the plan here?"

 He might as well have said, "are we going to bother with this old guy at all?"

Really doctor, this is where you START? How about a question like, well, sir, what brings you here today? Oh, you can't hear me, ok I will 1) speak up or 2) get the story from your son and then we will decide the plan together. Instead he disregarded my father in law completely and wondered aloud if they should bother to intervene at all.

 Steve brought the doctor out of the room and let him know that wasn't cool, and the doctor said he got that from Steve's body language. That makes me laugh because I can well imagine what that looked like. Eyebrows UP, head cocked, chin tilted just so, arms folded..... We can only hope that doctor learned something from that body language.

Everyone knows the medical system is flawed. This event could have easily been handled at an urgent care site without involving the ambulance and paramedics and the unnecessary expense. Instead the resources are strained to handle this non emergent matter. Then when he arrives at the ER, the doctor treats him like he is not worth any time or effort despite his relative good health.

I wish I had a silver bullet to fix the medical system, but I don't. Fixing the attitudes is easier. Or it should be. Doctors: Treat every patient like you would want to be treated. Every patient, young, old, disabled, sick, afraid, hypochondriac, mentally ill and everybody else.

It's the Golden Rule.
And it's charming.

The Illness Olympics

Maggie is home from school again today. I let her go back on Tuesday and Wednesday but in retrospect I probably shouldn't have.  Tuesday wasn't too bad but she was really wiped out on Wednesday. She was not happy that I made her stay home, but considering this is what he looks like at 9:37AM, I'm thinking we made the right choice.

I kept getting calls from the nurse at school yesterday that Maggie's oxygen needs were increasing. She needed the oxygen at a higher level just to stay where she had been on Tuesday. Sometimes that happens. I said I would touch base an hour later and see what was going on. When he called back an hour later she had a complete explanation. It seems the oxygen tank that I filled and sent to school never actually filled. The tank was empty.

This happened to me the other day too. Somehow the tank is not "catching" when I lock it on to the big tank to fill it. I called the company to come out and replace it. They are very responsive and arrived late yesterday afternoon. Of course there is absolutely nothing wrong with the tank, I just did it wrong.

That makes me feel so much better.

 I was going to get Maggie but she was able to use the O2 of another student.  Talk about relying on the kindness of others! I went home to get a spare e tank to trade for the one of his we were using, but they were different sizes.

We've spent the evenings this week falling asleep in front of the television watching the Olympics. It's not that they are boring,  they are not (but a little less ice dancing would be appreciated.) It's just that we are doing our own version of the Olympics here. We are all just wiped out from this bug and from ferrying Maggie to three doctor appointments and chest xrays and blood tests etc. No pneumonia or influenza but she is a sick girl.  I guess this is what you would call a Maggie version of a bad cold. Bad colds are tough on everyone. Maggie versions are scary.

  Hopefully she makes a turn for the better here soon.

Speaking of the Olympics, though, I have to tell you how very touching I find the story of the
Canadian Mogul Skier, Alexandre Bilodeau and his brother Frederic. Frederic has Cerebral Palsy and provides the inspiration and motivation for his now two time Olympic Champion brother.  Their connection is incredible. You don't need to have a kid with cerebral palsy to be touched by this story - but that fact that I do makes it that much sweeter. Watch the link for the sweet story

http://www.nbcolympics.com/video/alex-bilodeau-gets-inspiration-older-brother


And just because it's the Olypics, I get to share one of my favorite pictures of my kids. This was taken during the Nagano Olympics in 1998. They were fascinated with the bobsledding team and watched the competition in full bobsled formation.

X Ray Vision

My brief foray to Tahoe was great. It was relaxing and beautiful and a good opportunity to recharge my batteries. Good thing I did, too. We were about halfway through the 4 hour trip home when I received a phone call that Maggie had a fever. Hmmm. Maggie never gets fevers. She must really be sick.

As soon as I go home I could see that Maggie didn't feel well. The nurse had already given her Tylenol, so the fever was down, but Maggie was peaked and anxious. We couldn't get an accurate oxygen saturation reading because she was moving so much. I assumed that meant she needed oxygen so we turned it on and that helped a bit. She had an OK night, but I knew she needed to be seen by a doctor. When someone looks like this, they are pretty sick.

We went to the doctor, who talked about putting her in the hospital, then to the hospital for tests, then to the pharmacy for drugs etc. In between those trips there were at least 8 phone calls and emails to various doctors. She has some sort of respiratory issue that is not defined. Could be a slight pneumonia, could be atelectasis (partial lung collapse) and she also has a Urinary tract infection. Bad combo. Makes for an uncomfortable and unhappy Maggie. She needs oxygen and she is on antibiotics, so I am hoping things improve today.

 I am happily out of practice caring for a sick Maggie. She has been so healthy over the past year or so that we have been maintaining her health, which is a ton of work, but pales in comparison to the runaround and concern when she is ill. It didn't help that the runaround yesterday was far more complicated than it needed to be. Getting the chest xray added insult to illness.

It is NEVER easy to get a chest xray on Maggie. (I've written about it several times in the past) Maggie cannot get her body into the necessary positions to get a good picture. Generally one stands in front of the screen or sits on a stool. Maggie can't do either of those things. We can do it in her chair, but only after I remove the tray and the pole and the dynavox, take off the sides of the chair, flip back the laterals and the headrest and take off the straps. Of course then she is fastened only at the hips and I cannot let go of her for a second or she will be dangling by the groin straps.  It is labor intensive and very physical, but I know how to do it and can have it all done in about 3 minutes.

Of course one has to get OUT of the waiting room and into the xray room to accomplish all that. That can be more difficult than getting the xray. When they see Maggie arrive, they know it will be a lot more work for them (though really it's me) and there are immediately barricades in place. Yesterday they used the delay tactic, perhaps hoping we would give up and go home. But we all know that's never going to happen

When we checked in there was one person in front of us. I was relieved, because I needed to get Maggie home and into bed. That person was called and another family arrived. The other family was called as three others arrived. Now it's been 20 minutes. All three of those people went before us and I finally spoke up. There is always the fear that we weren't entered into the system or something.

I inquired very politely why all these people who arrived after us were going in while we were waiting 35 minutes. The woman asked my name and I said McDonald. She gave me some attitude and said, "don't worry, you're next." OK. Properly chastised I returned to my seat and gave a wan smile to another mom sitting there with her 12 year old daughter. I told her "it's the wheelchair. No one wants to deal with it so they put us to the bottom of the pile" Amazingly she said, "I know, my daughter used to be in one and it happened all the time." I said, "I do so hate to inconvenience health care workers with my daughter's medical needs." The mom laughed and so did the 12 year old.  We all bonded at that moment.

Them someone called Maggie's name and when I stood up she looked at the wheelchair and said, "oh, you need to wait here we have two more people in front of her and if she doesn't need to change (which she did not) then you can wait here." OK. Progress, I guess. Then they called the 12 year old girl with whom I had just bonded. The mom looked at me sort of  helplessly and I started to laugh. I said, "just go, you paid your dues. Besides,  they have to take us sooner or later."

Finally a full 45 minutes after we arrived,  they came to get Maggie. The mysterious people who were in front of us never materialized and we found ourselves talking to the nice mom again. Her daughter was just finishing up and we went in after her. There was absolutely no reason at all that Maggie had to wait. It was just a game of pass the buck until they couldn't pass it any longer.

The woman who had gently chastised me was the tech. I said nothing. It was time to just get this done. Maggie was getting hotter by the minute. She asked if I was going to remain in the room, and I said, simply. "You will need me to hold her." I removed all of the supporting pieces of the chair, put foam behind Maggie's head and held her arms above her head so they could get their picture.  I donned one of those lead aprons that weigh about 20 pounds and the xrays were completed.

As I started to put things back together the tech said nicely, "Please take your time. And thank you for your help."Again, I said nothing. It just seemed wiser. She was offering an apology of sorts because she knows I saw through the subterfuge.

It's called xray vision.

Give your input

My friend Elizabeth received a comment on her wonderful blog,  a moon, worn as it had been a shell. The comment was from a fourth year medical student who reached out to Elizabeth as the parent of a child with disabilities or special health care needs. The doctor wanted to know what parents want/need from their doctor and how s/he can provide that to parents and children s/he will meet in practice. Elizabeth called for responses. I gave one and if you feel the need, you should too. You can either respond at her specific post. (Just tell her you came from me) or respond here and I will forward it.

This was my response


Well, well well, kind Doctor. I applaud your willingness to bravely go where few doctors have gone before. It's a little place we like to call reality. Sorry for the snark, I do applaud you. Really I do. I want doctors who listen and get the fact that when I'm in his/her office with my severely disabled daughter for 25 minutes they do not understand my life or hers. They don't have to find a parking space that can accommodate her wheelchair, find space in a crowded elevator and find an outlet in the waiting room to plug in her suction machine. They don't know that I go home and lift her 80 lbs 20 times a day, change 10 diapers, catheterize and tube feed her and then have to do it all again the next day. They don't know about fighting insurance companies, schools, other services and the time and energy all of it takes. They don't know that I would do 100 times more than this if I were physically able because she is my child and even though it's a ton of work I should not have to justify her existence to anyone. at all. Ever. And especially not doctors. I want doctors to understand that saving a life means saving a LIFE -whatever that life is. I want them to read Elizabeth's blog over and over again until they get it as you seem to have. I want them to stand and cheer for my daughters amazing life, her amazing achievements, her amazing spirit without prompting. I want her to be valued as a human being. I want her to be judged by her character, and not by her disabilities. I want them to know we are all doing the absolute best we can in a very difficult situation and we do it proudly, even if a bit wearily. I want them all to want to reach out as you have. COngratulaitons. You will make an excellent doctor.

Give a kid a chance, will ya?

"In the End, we will remember not the words of our enemies, but the silence of our friends."  - Martin Luther King, Jr.

There is a girl named Amelia who lives near Philadelphia and will need a kidney transplant later this year. But she may not get it. This is not a story about the difficulty of finding a match. Her family will donate the needed kidney. This story is different and more upsetting. She is being denied the transplant surgery she needs simply because she has intellectual disabilities. Doctors are denying her the transplant because of her “quality of life.”  

If you have not figured it out before from reading this blog, take note: There is a very strong bias against the disabled in the medical world. This bias is generally found hiding behind the phrase “quality of life.” As soon as I hear a doctor mention Maggie’s quality of life, I start looking for the door.

 Western medicine wants to “cure” illness and disease, but disability cannot be “fixed” by the curative model and it is therefore problematic to many doctors. (Not all doctors, of course.) Disability is not an illness or a disease, though. It is a reality; it comes in all shapes and sizes and it affects people without regard to race, gender, or socioeconomic status. It is true, some people with disabilities lead terrible painful lives; but others lead wonderful full lives and have adapted to the disability. The quality of their lives is quite good, despite or even because of  thedisability.  This is difficult for doctors who have the bias to understand and yet these very individuals are often in the position of deciding who lives and who dies.

The story about Amelia is a difficult story for me because it triggered so many things that happened with Maggie last year. Maggie, of course, is a different story because she is so very medically complicated in addition to her disabilities.  Doctors have legitimate medical reasons for declining some treatments on her. Sometimes, though, legitimate reasons are used as smoke screens to cover the underlying bias and I have to delve a little deeper to find out.

Last year Maggie needed a very complex surgery, which she might not survive. Neither Steve nor I were interested in putting Maggie through that and looked for a less invasive alternative. The surgeon refused to do the complex surgery, which we understood, and told us there was no less invasive alternative available. I had already spoken with other doctors and knew the possibilities. I simply did not believe him.

I asked a hypothetical and said, Ok, what if Maggie had a less complicated issue and needed a simpler surgery. (I used a specific example – one that I knew would present no problem for Maggie.) He said NO. “She is no longer a candidate for any surgery because she is too compromised.” The smoke screen cleared. I knew then that this was not about Maggie’s medical issues at all, but about her “quality of life.” Then, just to underscore the reality, he said, “You didn’t expect her to live forever, did you?”

Well, no doctor, I suppose I did not. But I do expect her to get the same chance as other people.  Oh and by the way, you are talking about my daughter.

Lest you think I am delusional, let me assure you I fully understand how compromised Maggie is. I understand the dangers and live with them every minute of every day. I also understand when someone is writing off my daughter because he does not think she is “worth” saving. We went to other surgeons who did the less invasive alternative. It was simple, but we cannot be sure it worked. We are back to waiting and hoping, but at least we know Maggie got the chance she deserved.

I hope Amelia in Philadelphia gets her chance.

You can read her story here and if you are interested sign the petition at change.org to get the hospital to reverse its decision.

http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/

http://www.change.org/petitions/executive-vice-president-and-chief-development-officer-allow-the-kidney-transplant-amelia-rivera-needs-to-survive

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.

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.  

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 18^th 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. 

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.  

Red Tape for $500 Alex

Medical drama for Maggie.  She's fine, but she had to have a brain scan on Monday. It was clear.

I dealt with some of the best specialties available, anesthesia, post anesthesia care, neurosurgeons. But no one could help with with a HEALTH issue. Perphap medicine is a bit too specialized. No one can address the whole PATIENT. And when you have a Maggie, with multiple problems, I need someone to think about the whole person, not just their specific specialty.

Maggie had to be anesthetized for the scan because she cannot stay still. She was out for about 5 minutes, if that. Even though it was short,  they had to send her to the recovery room. That was a first - generally they just let her wake up and I take her. Maybe they used different anesthesia. No one could explain the change - why would I want to know?  I'm only the mother.

While in the recovery room she developed a separate, unrelated but acute and dramatic issue, one that required medical attention. Good thing I was already in the hospital, or so I thought. I quickly called the nurse who looked very alarmed and asked if this had happened before. I told her it had once before but she was already an inpatient at the time.  The nurse looked through Maggie's paperwork and said "But that's not what she's here for." Right, this is a new problem.  "Then I suggest you call your primary care doctor immediately."

I was dumbfounded. I'm sitting in a hospital, Maggie is bleeding from places she should not be and I can't get help.

My primary care doc is at a different location. We had an appointment with the neurosurgeons after the scan and I could deal with everything at this place. I said perhaps you should call someone who can help her now  and the said I really don't know who to call. I gave her the name and department of the doctor who would handle this problem but it wasn't going to happen. I had to leave Maggie in the recovery room to go out into the hallway to call the other specialist's office to get the test ordered. (no cell reception in the recovery room). Even that office  were reluctant to do it becasue they could not fit Maggiein  that day and would have to charge for an office visit. I said, I have already collected the sample, I just need an order for it to go to the lab.  Done - reluctantly, but done.

Now it's been 72 hours since that happened and I still haven't heard form ANYONE up there about this. I called my pediatrician (and good friend) less than 24 hours after the tests who got the results and started the antibiotic immediately.  Maggie has now been on antibiotics for 48 hours, not that anyone at the hospital knows that. By the time the specialists deal with this Maggie will be an old woman. If they ever heard this story they would shrug and say , well it all worked out. Yeah - no thanks to you or anyone else up there.

I get that specialized medicine is necessary. In fact I know the specialists have saved Maggie's life on numerous occasions. But some common sense should be injected into the equation at some point. Should I have to machete my way through red tape to get Maggie what she needs? 

What do you DO all day?

For those who still ask "What do you DO all day," here's my day today.

Maggie had some medical tests today that meant she could not have any food after 8AM. We kept the night feeds going until 7 and then I fed her at 7:30. She had to go hungry until 2PM. That's a long time for Maggie who gets a feeding every two hours.

We headed downstairs and the school bus was 40 minutes late. I didn't call until it was about 25 minutes late and then they said another 10 minutes. We waited, but that definitely threw off my timing for the day. I took a shower, prepared paperwork for the afternoon appointments and waited for a contractor to come at 10 so he could take the ceiling lift back for repairs. He called at 10 and moved things to 12:30. Grr. Ok.

I head downtown to pick up the check for the nursing, which is available on the 11th of the month. Of course there was a mix up that delayed things for several minutes and  I had to dash home to get there before the contractor. No time to put the check in the bank. I'll have to do it after Maggie's tests.  He arrived and wanted to test the loaner machine. I was eying the clock because I had to get Maggie. He left, and I raced over to Mission high to pick her up.

I swear I missed every single light on the way back across town. When you are sitting at a light saying "Please turn green" over and over, you know you are cutting things close.

We get to the hospital at 1:45 and there is no place to park. No place for about six blocks. I went into the lot behind the nearby market and figured I would get a validation when I came back an hour later. It' s a little scammy, but I was desperate. We arrive on the stroke of 2 and the tests started right on time. They took a lot longer than I expected and one was HORRIBLE for Maggie. She was frantic and sobbing. I'm happy to be there to comfort her, but its very hard to watch and I feel like a co conspirator. We get out of there about 4:15. Maggie is fine, but still upset.

I walk back to the parking lot, buy an iced coffee I really don't want in order to get my ticket validated, load Maggie's chair into the car (right in front of the guy in the ticket booth) pull out and hand him the ticket. My two hour validation is expired. I need an extra $5 to get out. That's fine, but I cannot find my cash. I offer him the visa and he say no cash only. He tells me me there is an ATM around the block. There is NO WAY IN HELL I am going to unload Maggie again. I pull over so others can get by and search through my enormous purse because I KNOW there is cash in there somewhere. I contemplate making a run for it, but decide that's beneath me. I cannot find the cash.  I was going to just give him my business card and tell him I would be back in 30 minutes with cash but I had to get her home for her treatments. Maggie is whimpering a bit but not crying any more.

I decided to calm down a little bit and look again. I put the coffee down on the seat between my knees, and calmly look in the various slots in my bag. I feel something cold and realize the coffee is all over my khaki pants. Lovely. Just then I  find the cash. Who cares about he pants. Let's go HOME. I walk over and hand it to the guy who just looks at me sympathetically.

We get home and Maggie is overdue for her treatments. She is still upset by the NG Tube they had to shove up her nose. I don't blame her. I am too.

I hop in the shower for the second time today. Never did get that check to the bank. It has to clear by Thursday so I can pay the nurses. I will have to juggle some funds to make that happen. But that's tomorrows problem.

Now I have to go to a meeting at a different hospital. In fact I'm late.

I sure hope there's parking.

Bend and Stretch

Note, I am a lay person, no one should rely on this information as anything other than my understanding.

Maggie has cerebral palsy, among other things. Cerebral palsy (CP) is an umbrella term for physical problems as a  result of damage to the motor area of the brain. The amount and precise type of damage dictate the level of motor impairment. In some people the CP causes high tone, causing some muscles to contract all the time making the limbs extremely stiff and hard to work with. Other kids might have low tone which makes their bodies very floppy. Maggie has a combination of the two, she can go from very tight and stiff to very loose and back the other way several time an hour. Also some parts can be stiff and other parts floppy. You just never know with her. Her specific diagnosis is spastic quadriplegia meaning all four limbs are involved, which they are, but in her case the tone in every limb and the trunk fluctuate wildly. She actually has excellent control of her arms, and good control of her legs, but her trunk and neck are particularly weak and she cannot hold herself up. She also has athetoid movements and dystonia which are involuntary movements and she seems to be flailing around at times. She knows what she wants to do and can generally do it, but it takes a lot more movement than it does for normal people.

One thing that is very difficult for Maggie is to consciously move in a specific way, especially on demand. If she thinks about it too much, it is harder for her. One example of this is asking her to bend her knees when we are changing her. Often her legs will straighten like a board because the message gets "confused" in her brain and it does the opposite. The neurologist said this is typical with Maggie's type of issues. Sometimes its behavioral - because it is fun to mess with mom or the nurses - but generally you can see that she's trying but the opposite is happening.

To get around this, we have to make her do something that causes her to bend without thinking about it. Sometimes I tap on her knees to remind her, sometimes I touch her hips to cue her etc. Sometimes those things work and sometimes they don't. She's too big and stiff to change her without some cooperation so lots of times we just wait for her to figure it out. It can take several minutes just to get her to bend her knees.

For the past couple of months we have been successful in getting her to help by using her muscle memory (my term) instead of making her concentrate. Maggie's nurse Fely taught Maggie something many years ago. She asks Maggie "how much do you love your mother?" The answer, of course, is head to toe.  Maggie points to her head and then bends her knees and touch her toes. Now when we need her to bend her knees I just say How much do you love you mother? and she automatically bends her knees to answer. (Note: if she's being funny it will only be from her head to her knees or, in a very bad case, to the chin. But that makes her laugh so hard her knees bend anyway.) She knows why we are asking and she's happy to comply.  I just find it fascinating that this works while her own best efforts often fail.

We do a similar thing to get her to let us help her in other ways too. Years ago Lydia,  her Occupational therapist, used to instruct Maggie to have a "soft body" so we could put her in her chair. She would automatically relax for a moment so we could safely get her in the chair. That still works occasionally too, but for some reason it often makes her laugh and, unlike her knees which automatically bend when she laughs, her trunk stiffens like a board. We can be trying to lower her into the chair when she starts to laugh and straightens out like a piece of steel. You have to be ready for anything to keep from dropping her. The closer you come to dropping her, the harder she laughs and the more she stiffens. It's a great game.

When I go to the doctor for my sore shoulders and tell him I have to lift my disabled child, he clucks sympathetically, but I'm fairly certain he has no idea of the daredevil tactics we undertake with each lift. I need to figure out some sort of muscle memory that will make her soften her trunk before I drop her on her head.

Maybe I can talk to these people.

 Have a great weekend!

School starts Monday!

Put the LIme in the coconut, then you feel lbetter

Maggie missed special Olympics. 

 It's Friday 13th. And it started early.  

The nurse woke me at 12:45 because Maggie's sats(oxygen saturation levels)  were dropping and she was needing more and more oxygen. We got her stabilized and she fell asleep. I decided to wait on the ER because she needed the rest. She was stable and we were dong everything they would do at the hospital. Things are just easier in the cool light of morning. I came back down around 5:45 and she was still needing a ton of oxygen. 

I called the pulmonologist. He does't know Maggie - never seen her. I talked to him the other day after the xray which he called "equivocal". He gave me some attitude immediately and put the hair on the back of my neck at attention. Not a good idea. he said, "Recall I suggested we see her yesterday." I responded with "yes, that's Right, doctor and she wasn't that sick then.  TODAY she is sicker and I'm wondering if I should bring her to the ER."  pause, "Well I certainly would." A little jab, but I ignored it.   

Ok. We go to the ER, she has another chest xray and a ton of lab work. She has a very high heart rate (like 140) and  low sats (like 83) and needs a ton of O2. The also give her a litre of fluids because she's dehydrated. We are doing great in the ER and then this same doc from the phone call  comes down with a sort of "I don't know why you are here" attitude. 

 Really, dude? You guilt me for not coming, and then question why I've come. Even the ER doc and nurse called him on that. I wanted to say "Pick a side and stay there - don't just be opposite of me. It's not a fun place to be." - but I didn't.

 He figured it out soon enough. 

I got a little snippy with him and insisted we have a game plan. He threatened admission. I said "do you think she needs that" He said No, I said  "then why are you suggesting it? don't think that's what I want. I just want to know when I should be worried enough to come back."  He said come back if she needs increased oxygen and has a high heart rate. I looked at Steve and at the ER doc incredulously and said, "you mean like NOW?" He said I guess I mean higher than this. What's the highest O2 need she's ever had?  I said "this is it." He said. ok, if it gets any higher. 

 He wasn't making any sense, but I discerned it isn't an obvious  bacterial issue and the drugs she is on should be ok. Or it's viral and they won't help and neither will any other drug.  I can handle this at home, but I don't want to be stupid or cavalier about when we should go.  

When he left the room I looked at Steve and shook my head. I said "that was unnecessarily difficult. Steve just smiled wanly and said, "he was teetering on the brink." I said "Brink of what" Steve just paused and said "we both know." I smiled because I did know. I was snippy, but I didn't take his head off like I can and will if I have to. But he WAS on the brink of that. I'm getting better in my old age. 

So we are home and hoping two things. 1) this starts to go in a positive direction or 2) that's he's not on call this weekend. I need someone I can work with and he aint' it.  The ER doc and nurse kept telling me NOT TO HESITATE TO RETURN.

We left there with a dx of "presumptive viral pneumonia"  and told "to get plenty of rest and fluids."  After all tht it sounded like a commercial for Bayer aspirin. 

Apparently Maggie's only olympic event was rapid breathing. She medaled. 

Everyone's a winner

Neurology for $200, Alex

Maggie suffered a brain injury either before she was born or shortly after or both. It’s never been entirely clear because there was always so much going on that her delayed development was attributed to her medical issues unrelated to her brain. Eventually it became clear there was more going on and we started checking things out.  That meant visits with neurologists.

 A consultation with a neurologist first happened when Maggie was about two months old and still in the Newborn Intensive Care Unit. That doctor told me a a thick European accent, that “yore babee eez floppy.”  What did that even mean? I could feel panic rising. The nurse told me she says that about every baby and Maggie had all these medical problems so of course she was floppy.  Not wanting anymore problems, I ignored that doctor. Of course she was right.  Maggie was floppy and her medical problems were not enough of an explanation. But I had to deal with things we could DO something about.

I think we next saw a neurologist when Maggie was a year old because that is when we got the spastic quadriplegia diagnosis (a form of cerebral palsy). By the time we heard those words, though, we were already quite aware of her problems. It was confirming what we already knew. Maggie did not and does not have any seizures. Her neurological problems are what they are and other than constant therapy and occasional monitoring, we don’t need to see neurologists very often.  And  that is A-OK with me.  We’ve probably only seen one five times in her life. Now I go every three years and have a nice chat with the neurologist.

 As is their very difficult job, the neurologist tells you all the things your child will not be able to do and the limitations she will face. When Maggie was little, I would listen to the parade of horrible and wish I was somewhere else.  It’s never fun.  In fact I read an excellent blog post describing what it can be like for many families, especially those looking for answers.Check out  Annoyed at the Neurologist 

We, of course, are not like many families. I actually have a neurologist story that makes me laugh to remember. When Maggie was about three we had an especially entertaining visit. Well, entertaining for us anyway.  The attending neurologist was preening a bit for his residents and going on at length about what Maggie would never be able to achieve. I sat there like a punching bag largely ignoring him, because it wasn’t being said for my benefit. Don’t’ get me wrong, he was correct in his assessments, but just kind of coldly listing them off.

I interrupted him at one point and said, “Yes, she does have physical limitations, but she is cognitively intact.” 

There was a long silence until the neurologist said to me in a rather patronizing way,

“And just HOW do YOU know THAT?”

I looked at the several doctors and said with a grin, “she laughs at my jokes. She MUST be smart”

Silence again, except for my snickers (and probably Maggie’s). The doctor just looked at me and made a notation in the chart. That was the end of that visit. I don’t know what he wrote that day, but I presume it’s something like “Mother delusional.” Again, he may have hit the nail on the head there, but I was right about Maggie’s intellect.

Maybe I should publish a study.

A break from Spring break

Maggie is off school this week. It is her spring break.We planned a fun outing at least once a day in the morning before the nurse arrived. We haven't done that well. We did go shopping on Monday, we went to grandpa's house on Saturday and had a trip to the park on Sunday. Monday was just one errand in the afternoon. Tuesday we did have fun doing some shopping for the opening of baseball season - including a walk around AT&T park in Maggie's panda hat.

 (For those of you NOT SF Giants fans 1) why not? and 2) "Panda" is 3rd baseman Pablo Sandoval's nickname.)

Today was supposed to be another trip to Fisherman's wharf. The weather is fantastic and we were going to hit the wharf early. But it was not to be.

Early was redefined.

Tim arrived home at 1:00AM and the nurse told him to wake me up to come and check on Maggie. She was needing increased oxygen. I hung out for a while evaluating and basically told the nurse to marshall on. Yes. It was concerning and I needed to check in with the doctor in the AM. The nurse may have wanted more, but Maggie just wasn't sick enough to justify a trip to the ER in the middle of the night. Basically they (read "I") would have monitored her all night and I had a private nurse to do that. I went back to bed and tossed and turned until 6:30.

In the morning, Maggie looked better. The nurse left and I was in charge. She was doing ok, but I had to report this. i called the nurse practitioner. The message said she was on vacation but the other NP would be checking messages and returning emergency calls. Were we an emergency? No, not at that point. I chatted with my sister on the phone and kept an eye on Maggie. By 10:30 she was looking pretty pale. I told her O2 sat and it was alarmingly low. I put the oxygen on and decided to page the pulmonologist. (First time I have used her direct pager since she gave it to me a couple of months ago.) I was hoping we could just get an order for a chest xray and whatever labs Maggie needed. Nope. We had to go through channels. She told us to go to urgent care.

Urgent care has punted Maggie to the ER too many times for my liking. They decide based on her description alone that Maggie has to go to the ER. Maggie is not sick enough to need the ER and it is a waste of time and money to go there. I called Dr. Aicardi, her private pediatrician. As usual, they were extremely accommodating and we could be seen there at 11:30. Perfect.

We were there for an hour. Maggie had (another) breathing treatment and her numbers improved dramatically. We took a prescription along with orders for blood work and a chest xray to use if she got worse instead of better.  It could go either way. We waited for the drugs for 45 minutes and then gave up and went home, arriving around 2:00PM. By 3:00 PM I talked to the doctor and they changed the antibiotic they had just ordered. I needed to go back to Walgreen's to get the new drug. ugh.

Tonight Maggie's numbers are a bit lower again. She is a little worse, but not terribly. Still, things are not gong in the right direction. It looks like our outing tomorrow will be to the lab for the blood work and xrays.

Too bad. We had much more enjoyable things planned.