A Disturbance in the Force

Maggie runs this house. Her schedule, her rules. You don't like it, too bad. She is large and in charge (well except for the large part)

Lately, different things have happened that take some of the focus off of Maggie. Steve's dad has been ill and we had to get him here to San Francisco to keep a better eye on his recovery. That took a lot of energy. Maggie tolerated that because it was grandpa and she adores grandpa. Plus having him in San Francisco means she will get to see him more often, so she still wins on that front.

The dog is aging rapidly and having some health issues and there has been lots of focus on him. That is not constant, though so it is also ok. Maggie notices, but allows it.

This morning there are other things afoot that are taking the focus off of Maggie. Steve has a medical procedure this morning and Tim started a new job. Either would have been ok, but both - no way. That put Maggie second to last in the attention getting department (just ahead of yours truly.)

Maggie decided enough was enough and  yanked out her trach tube. In fact she pulled on the ties so hard she broke the flange. Of course I quickly replaced the tube before I noticed it was busted, so I had to get another tube ready.

There is really nothing like an emergency trach change at 6:45AM. It gets all the juices flowing very quickly. Who needs caffeine?

The morning continued on with the new tube while I got everything else ready to go. I looked over and Maggie was yanking on the ties again and had it so loose that I had to stop and re-tie it again. I told her not to worry, everything would be back to normal by the time  she gets home from school.

She can resume her place as the center of the universe.

Grazie for haircuts!

One of Maggie's favorite places to go is the hair salon where she gets her hair cut. It's in north beach and cable cars go right past as she's sitting in the chair. (note the cable car in the background in the picture).

Lisa, the Italian woman that cuts her hair tells Maggie she is bellissima and now she is no longer a "bambina" but a "bella signorella." Despite the Italian words Lisa really speaks Maggie's language. Who wouldn't want to go there?

Maggie laughs through the entire haircut but really recoils at the water spray. 

One problem with having a trach and getting a haircut is the constant concern about stray hairs getting into the trach tube. If we didn't catch it it would be a huge irritant in Maggie's airway or lungs which could present enormous problems We had to stop periodically and suction out stray hairs. When it came time to blow dry off the excess bits of hair I just held the scarf over her trach. Maggie even thought THAT was hilarious 

Maggie is now cleaned up and ready for the holidays. And she looks bellissima

Ciao tutti!

Chew on this for a while.

Recently I rediscovered Grape Nuts cereal. I forgot how delicious it is and how very very long it takes to finish a bowl. Each spoonful requires a lot of chewing. One of the upsides of this: you can get a lot done while you eat breakfast.

Sunday morning I was chewing and chewing and hanging with Maggie. She was bored at my long periods of silence. (No talking with your mouth full!). A bored Maggie is not a good thing. When she is bored she frequently starts pulling on her trach ties. It's a bit disconcerting to say the least.

This activity is discouraged at every turn. Maggie can pull out or break the tube very easily - and has done so dozens of times. A broken or dislodged tube sends us all into a flurry of activity. We have to work fast to get the new tube in before she gets into trouble with her breathing. Even if she doesn't break it or pull it out, the constant tugging on the ties loosens the whole thing making it more likely to fall out at a later time.

As I chewed I inspected her trach ties. They were extremely loose. Perhaps the nurses had also noticed this because someone had done 7 or 8 knots in the ends. Tying additional knots will prevent Maggie from undoing the ties (which she has done on occasion) but it does not do anything about the looseness of the tube. I figured I could re-tie it while I finished my cereal.

Retying the trach while Maggie is in the chair is difficult because the headrest on her wheelchair is in the way. Initially, Steve came over to hold her head forward while I worked but it was going to take too long because there were so many knots and some of them were really tight. We put her back in the headrest and I went to get the tools to loosen the knots and scissors to cut off the long ends once it was re-tied.

When I couldn't get a knot out, Steve, the fly tying fly fisherman would step in.

Then I got into a rhythm. Take a bite of cereal, undo a knot while I chewed. When I looked and saw my "still life with Grape Nuts and trach tools,"  I marveled at the absurdity of our life and I  wondered if everyone was this efficient while they ate Grape Nuts.

Funny, I've never seen this on the commercials.

Technical difficulties of the third kind

This is a new computer and I am constantly surprised when I press a button and something unexpected happens. I was just about done with a post yesterday when it disappeared from my screen. It was quite frustrating, and I had to just walk away.  Hopefully the computer did not decide the post was too dull and did a self edit. I am in big trouble if that happened.

I awoke early this morning and took a shower before coming downstairs, which is unusual for me.  Generally the mornings are so jam packed that I have to wait to shower. It was leisurely and nice and I arrived downstairs refreshed and ready to face the day. it didn't last long.

 As always I went straight to Maggie's room where I found Lucy the nurse struggling to hold a broken trach tube in place and get a new one ready. I hopped into action. It is very difficult to change a broken trach tube alone. You have to hold the old one in place and then switch it for the new one and then hold that in place while you thread the ties through. Basically you need three hands. Plus, this is all done on Maggie who cannot stay still. The trach change doesn't hurt her and she is very cooperative, but her movements are involuntary.  I took over while Lucy held the tube in place and Maggie was all squared away with a nice new breathing tube.

Then I had a cup of coffee, though the caffeine jolt was unnecessary

This is the second heart rate raising incident in two days, though the other was just for a moment. On Labor Day Maggie and i went downtown to shop. We didn't buy anything, but we wandered around Union Square and hit both the San Francisco Center and Westfield mall on busy Market Street. It is a shopping mecca and Maggie loves it.

Market Street is the main artery in downtown San Francisco. it is an incredibly busy place with street cars and buses everywhere in addition to taxicabs and regular cars braving the madness.

As we wandered back toward our car, we had to cross Market. No problem, there are plenty of signals and it's pedestrian friendly. We crossed at this very intersection shown in the picture and for the first time ever, the front wheel of Maggie's wheelchair got stuck in the streetcar track. I pulled and tugged but nothing happened. Buses and streetcars were waiting for the green light to proceed.  I could see the pedestrian light counting down and could feel some adrenaline starting to pump. Maggie was oblivious to this of course. She thought it was hilarious that I kept yanking on her chair I yanked again with that mom strength and out it popped. We got to the other side of the street and I saw a man and a woman with their eyes popping out watching us. The guy just said "good job there." I nodded but just kept walking, not trusting my voice yet. 

 There wouldn't have been any real danger, of course, Maggie was clearly visible and she would not have been hit or anything. But Maggie and I would have shut down Market street while we got her unstuck.  That alone was getting my heart racing.  

As we drove home, I told Maggie she was Nell and I was Dudley Doright. She was unimpressed. I think she puts me in more of a Snidley Whiplash category. After all, I'm the one who got her stuck on the tracks. 

That's three very different types of technical difficulties in three days. Of the three, I'll take the computer problems. they are aggravating, but not scary. 

Here's to a calmer remainder of the week. 

Waiting for the other shoe to drop....

Six weeks after breaking my foot I am back into regular shoes. Yay!! It's still a bit tender and my confidence needs a bit of work, but it's time to move forward.

Let me tell you I will not miss pushing Maggie in her chair while limping behind it in either the walking boot or the "Darby"  shoe that I've been wearing since April. We were a bit of a pathetic site. Yesterday at the museum some concerned lady said to me, "Why are you doing the pushing with your sore foot?"  I just smiled and said, "what are you gonna do?""  She smiled back, but in a sad and sympathetic way.

Too bad I didn't have a basket, we probably could have raised some real money.

Yes. It is time to lose the special shoe.

When I went to the orthopedist yesterday he asked about the pain and function.  I told him pain was manageable but stairs were still difficult. My instructions are to use the Darby shoe as needed but I should expect to need it less and less. Good news.

 As he wrote in my chart and we talked, I mentioned that I had to hurry down the stairs in the middle of the night without the shoe on and felt like I had set myself back a little bit. He continued writing and said without irony and without looking up, "well, don't do that." (Makes sense). I just said nonchalantly, "well, it was a bit of an emergency because my daughter's trach broke and the nurse was yelling for me to help her."

His head whipped up and he looked right at me and said, "What did you say?"
Thinking he didn't hear me, I  pointed to my neck and said, "she has a tracheostomy, and her trach tube broke."

I really was just saying it in passing because it explained why my foot was still sore.  It was just light conversation as the appointment was wrapping up.  But he was clearly and completely surprised by my statement, and I think my nonchalance was just as surprising as what I said.

 He stared at me with that perfectly calm doctor face, but his eyes were wide. Without looking away he said, in that perfectly calm doctor voice, "Yeah, I can see where that might require you to hustle."

His calm demeanor and voice were totally betrayed by the sudden rapt attention and wide eyes.

I've seen doctors remain calm on the outside when they clearly weren't inside and it can be very scary. But this time it was funny.  He has absolutely no reason to know anything about Maggie. He is my doctor, not hers, and not affiliated with any doctor or hospital that I use with Maggie. Her trach, broken or otherwise, didn't effect him professionally at all. But he knows what having a broken trach means and was concerned. It struck me very very funny to see his surprise give way to his immediate professional reaction.

As I walked gingerly back to my car -- in my very own shoes -- I found myself giggling.

Who else could have that conversation and interpret all the nuances the way I did?
Hardly anyone.
Who else would find it so very entertaining?
I'm thinking no one.

That made me laugh even harder.

Six years and counting.

Yesterday was one of those weird anniversaries, the kind you really don't want to remember but you can't avoid. March 13 is a lot of things. It's the birthday of one of my oldest friends, and several other people I know. (Thank you facebook). This is random, but for some reason I remember that in 1982 it was the day I received my acceptance to law school. Those things, while important, are not the reasons I remember March 13. I remember it mostly because it is the day Maggie got her trach.

It was 2007,  the worst year of my life. My father died in January, my mother's house was robbed in early March and the very next day Maggie got sick.  Really sick. Obviously, she had been sick many times before, but nothing like this. She was in the ICU with the oxygen turned up as high as it would go and still gasping for air. It was very hard to watch.

Withing a day or so we were told that either Maggie had to get a trach or we had to prepare to say goodbye. Even typing that now makes me shudder. We knew we couldn't watch her struggle anymore and agreed to proceed with the surgery to place the trach.

It was awful.

Awful.

I didn't think she - or we - would survive it. We wondered if we had put her through that surgery only to lose her anyway.

She stayed in the hospital for three weeks and then came home. Her care needs increased into the stratosphere and we struggled to keep up. Those first months after the trach placement were very very hard. Basically I lived that entire year certain every day was Maggie's last. She was in and out of the hospital several times, each admission scarier than the time before. But Maggie is the toughest girl in the world and kept fighting.

Eventually things settled down. Maggie recovered from the surgery. She adapted to the trach and the complications of it all started to subside. We became more comfortable caring for the trach and all that entailed.  By the time 2008 started Maggie was actually healthier and has steadily grown stronger since then.  

Now I have a love/hate relationship with the trach. I love it because it saved her life and made her stronger. I hate it because it is ugly and ties her and us to an unsustainable schedule, which we have nevertheless sustained all this time. .

Now six years have gone by and, as the saying goes, it is what it is. I realized the other day that we have all adapted.  Maggie had her graduation picture taken and my neighbor asked how we were going to cover the trach. That question took me by surprise because it never even occurred to me to try to cover it. First of all, she needs it to breathe, even while the picture is being taken, and I'm not sure how we could cover it and have her breathe at the same time; but, in addition, the trach is just a part of Maggie. Ugly as it is, a picture of her with the trach hidden would be bizarre to me.

It was funny to come to that realization because I would have done anything to hide it, or get rid of it, when it first became a part of her. I presumed our ability to adapt took all these years, Then I spied THIS guy sitting on Maggie's bed and realized the adaptation started within days of getting the trach,.

This is a picture of Patrick the Frog. He was a gift to Maggie from her nurse Fely. She wanted a green stuffed animal because she gave it to Maggie on St. Patrick's Day 2007, just four days after she got the trach. We put a trach on him then and it's been there ever since.

He is breathing easier too.

Still,  it's not easy being Green.

A Distressing Morning

Saturday morning, we had to sign papers for the refinancing of the house. The notary was at our house at 8:30AM so we could sign the dozens of documents to make the horrible loan process end. We have been working on this for over three months. Even though we have excellent credit and a ton of equity in our house, it seemed as though this loan was not going to close. I found the process to be quite onerous – much more so than in past times and we had to jump through a million hoops to get it done. Other missteps by the lender almost caused me to pull the plug on the whole deal just a few days before closing, but the thought of starting again, or going through all that for nothing forced me forward.

Of course, when the notary arrived with the papers there were questions.  The documents had mistakes and were unclear. The notary kept pushing us to sign anyway saying we could rescind within three days, but that is not how we roll (and that is bizarre advice for a notary to give). She was clearly irritated with us, but neither Steve nor I cared. The financing for the house is a little too important to worry about the feelings of the person whose only role in the whole thing was to witness our signatures.  We were on the phone with the lender clearing up the confusion. Their work was sloppy and trying to unravel it on the phone was difficult.  They were asking me to compare these documents to ones forwarded to me in an email several months ago to explain the confusion. This did not please me but I went over to my computer to do the search.

That’s when Maggie had an episode of respiratory distress. 

I hate those things; they are scary as hell. They are scary for Maggie and for anyone who happens to witness it.   After the second one in September, we took her to the ER. They wanted to admit Maggie then, but they did not know what they were looking for. I cajoled and promised to follow up with the pulmonologist and we avoided admission and allowed to go home. She had an exam under anesthesia a few days later and the doctor could give me no reason for these episodes. But they seemed to stop, so I did not worry.

Now they are back. There were a couple of episodes over Christmas break, two last Thursday and one on Saturday.   That is five in about three weeks. Not good. I do not see any pattern to them and I cannot figure out what triggers them. Something happens that starts a chain of events and in about 10 seconds, Maggie is not breathing and turning blue. She seems to be holding her breath and because she is panicked, she cannot “remember” how to stop herself from doing so. Her arms are extended and fisted and it is very frightening. They can last several moments and even when she starts breathing again, she is completely freaked out and needs a large amount of oxygen to calm down and get back to normal. Needless to say, everything stops when that happens. 

On Saturday, it hit as I was on the phone with the lender and the notary’s irritation was growing. I saw it start and said “Steve, she needs oxygen.” Steve was already in action before I even said anything. I told the lender we had a medical emergency and she needed to figure things out and call me back. I look at the notary who had gone from irritation to shock. I actually felt a little sorry for her. If she could have flattened herself against the wall, I am sure she would have. I tried to sound calm and said, "don’t worry, this happens sometimes, we know what to do" -- all while I hoping we really did.

Maggie recovered. The lender called back acknowledging mistakes resulting in an error in our favor (of $32) and said keep it. The notary whipped through the paperwork and could not get out of here fast enough.  

 After she left and we all relaxed, Steve and I could not help but laugh at how completely ridiculous our life can be. 

At least we made $32.

The Ferrari of Wheelchairs.

I used to say Maggie's wheelchair was like a Cadillac because of all the bells and whistles. Now I think a better comparison is a Ferrari. It's sleek and pretty, but CONSTANTLY in the shop.

Day 3 of school.. Day 6 of the long awaited wheelchair repairs. Day 1 of me going to school to meet with the wheelchair guy about the problems with the new equipment, which now has its first piece of duct tape..

Ahhh. I'm back in the saddle again.

The duct tape is not to cover something that's ripped, but to prevent Maggie from unzipping the cover to the yoke on the headrest. She discovered the zipper about ten minutes after the new piece was installed and pulls it down. Then she starts clawing at the material underneath which is something like a hard foam. I didn't realize that at first until I saw something black on the edge of the opening on her trach. I shrieked and jumped up thinking there was a bug about to crawl into her lungs and quickly swished it away. It wasn't a bug, but there was the same material in her hands. Then I saw the claw marks in the material exposed because Maggie unzipped  it. Out popped the duct tape lickety split.

Protecting Maggie from herself and her unzipping fetish is easy, however. The bigger problem is that the new headrest does not work for Maggie at all. Sad but true. We waited months for it and it's not right. It's not broken - YET, but it is unworkable and needs constant tightening.

The guy said he thought the "set screws" weren't properly tightened, but I know it's not that simple. This is a case of Maggie's big heavy head, that is constantly moving and generally extending back, overpowering this overly intricate set up. We need something with less moving parts that will provide her stability. It needs adjusting constantly (like every 10 minutes)  and several times I  have to take it completely apart to make the adjustments.Yesterday I thought perhaps she doesn't even need the long yoke piece and simply removing it would fix the problem. Nope. As I did the temporary repairs her head kept falling to one side. I could not fix the chair and hold her head at the same time and had to call Steve from upstairs to lend a hand. It's craziness.

 In addition the yoke is dangerously close to her trach. If Maggie turns her head quickly, it could knock the tracheostomy tube right out of her neck. And that is completely unacceptable.

The other end also presents potential dangers.  The new foot box came as a split - that is separate pieces for each foot. That is just an error. It should be one solid box which provides fewer spaces to get her foot wedged.  I spoke with the guy on the phone and he remembered we did it separately for a specific reason. I said no. The appointment came just AFTER we had to call the fire department to rescue Maggie after getting her foot wedged into the chair. (Maggie World: 911. What's your emergency?)

Hopefully it won't be months to get the right parts.

Meanwhile, I going to look at a fancy red Ferrari for me. Why should Maggie have all the fun?  

Maggie's New Voice

Someone pointed out to me that when I talked about the love/hate relationship with the trach, I left out the fact that it silenced Maggie's voice and her giggle. That definitely falls into the HATE category.

I find it amazing that someone had to point that out to me, though. For the first few years I couldn't stand it when Maggie laughed or cried and no sound came out. I guess, like everything else in our lives, that has become "normal." Her new laugh, though silent, is just as mirthful. Though I miss the sound I know she is happy and apparently that is now enough..

Of course Maggie's abilities with her dynavox have exploded in the past few years and her communication skills are better than ever. Five years ago, before she had the trach, she as still learning how to operate the device and we never heard the things we hear now. I don't think she was still learning to formulate a sentence. She started telling her jokes after she got the trach too. So much of Maggie comes through that dynavox that it is hard to even remember when she wasn't as well versed in communication. I still miss the sound of her voice, but she "talks" so much more now than she did then.

This week she is learning a new dynavox. After much study of the various options and months of waiting for reports, and then denials so we could get to proper approvals, her shiny new Dynavox Maestro arrived. With the help of Maggie's AAC specialist I was able to transfer the pages from her old device to the new one. There are glitches and things to be worked out, but this machine is very cool. Check out the two next to each other. The Maestro  is smaller and lighter than her old one and has a lot more capabilities.

There is a new "voice" on the Maestro which sounds a little like a techno-Marilyn Monroe, sort of breathless and flat at the same time. That's hilarious. For some reason the speaker sounds like it's blown but only when its performing some functions. On others it sounds fine. It's annoying, but fixable. Other glitches are equally annoying, but likely can be remedied fairly easily once we learn what we are doing.There will be a steep learning curve for a while. The dynavox rep told me I could hook it up to the internet and download fixes right to the machine. Right. I can barely figure out how to turn it on.

One criticism I have is that this very expensive machine does not have a case that works for a wheelchair user, and I would guess wheelchair users are a significant percentage of their customer base.  It does have a slick case sort of like an IPAD case, but if the case is on you cannot attach it to her wheelchair. Also the strap for the machine is on the bottom so you cannot hold it while attaching the machine to the pole. It is very difficult to mount it without dropping it. I have asked whether there is another way to protect the machine from both of these problems, but have not yet received a response. I'm hoping there is some easy fix to this stuff too.

Maggie will also have to learn the tricks of this new device, but I'm sure her success will be much faster than mine. This is her voice, after all.  

Trach-a-versary

Today is the 5th anniversary of Maggie getting her trach. Five years! that is unbelievable to me.

Right after her birthday in 2007, Maggie was admitted to the hospital with pneumonia. Though she had pneumonia many times before (and since) then, I knew it was bad. She needed the highest possible levels of oxygen and was still gasping for air. Her trachea, which was never anatomically correct, was collapsing and she could not get the air she needed into her lungs. We already knew from tests done months earlier that her airway obstructed her breathing during sleep and they had discussed a trach already, but I was sure she wouldn't need it. My rationale: She had this airway problem since birth and she had always done OK. We know what we are doing. On most kids the airway problems resolve on their own. It didn't with Maggie and as she grew it was getting worse. Then the pneumonia hit, and her body just couldn't keep up with her increased oxygen needs.  After about a week in the hospital we were told that she needed the trach to survive. No more rationalizing.

She was in the hospital a total of three weeks that go 'round. Two weeks before and a little over a wee after the surgery. We couldn't go home until it was safe to change the trach tube because they had to be certain we knew how. Of course it wasn't safe to even try to change it until the surgical site had several days to heal. When she finally got out of the hospital, we came home to a room filled with much more medical equipment and supplies. It was the most overwhelmed I felt since Maggie first came home from the NICU when she was three months old.

 I've said many times that we have a love/hate relationship with her tracheostomy. The love part is easy: Without question that thing saved her life. I don't think she would have lasted the week, five years ago or today, without it. The hate part is more complicated.

Before Maggie had her trach, caring for her was time consuming and difficult, or so we thought. After the trach, her care needs went into the stratosphere. She has to have someone intervening to suction or do some other intervention every minute of so. The constant vigilance is exhausting.

The first year or so after the trach was placed we almost lost her a number of times. It seemed the trach caused as many problems as it solved. After a few 911 calls,  multiple hospitalizations, changes in treatment plans and scary episodes, many of those resolved and we settled into our current state. There are still emergencies, in fact we had one on Saturday evening. The trach tube comes out and Maggie gets into distress fairly quickly. Though I have done it alone several times, it is really a two person job to get a new trach tube in and tied properly.

On a less dramatic front, the thing is scary looking and made my beautiful daughter into something of a freak. It was bad enough before the trach. The wheelchair, the communication device etc, but the trach tube is on her body and it creeps people out. Stupid, I know, but that's part of the "hate" side of the equation.

In the five years that she's had the tracheostomy, Maggie has thrived. She continues to have unbelievable medical needs, but she is far healthier today than she has been in many years.  In those five years she completed middle school, started high school, attended two proms, has friends, discovered Beyonce and pop music, really took off using her dynavox to communicate and figured out how to order us around. She is living her life and that would not have been possible without the trach.

I think the love outweighs the hate.

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.  

Mystery Passenger

Our van came equipped with privacy glass. Everything behind the drivers area is darkened glass. We are like international men of mystery. If anyone is interested, the back of the van is generally filled with dog hair and medical supplies.

The privacy glass means that people cannot see Maggie, or any passenger in the back, when we are driving or even when we’re parked.  I had one lady yell at me for parking in a handicapped zone. I didn’t respond to her at all and she looked  pretty stupid when the door opened and Maggie was sitting there in her wheelchair.  (To be honest, I rather enjoyed watching her squirm.)

 If we are driving, people in other cars can see that I’m talking but they cannot tell if there’s anyone else in the car or not unless they have their face pressed against the glass  (which would be creepy). I know I look like a nut case talking to myself, I can see drivers in other cars eyeing me suspiciously, but I really don’t care.   

 The other day Maggie and I were riding down 19^th Avenue,  is a six lane “highway” right through the city. There are lights at every corner, but they are timed and if you go 30 mph you can generally make it ten or twelve blocks without stopping. Because everyone is doing that, you have pretty much the same people next to you for several miles.  You can set the tone for the ride at the first opportunity. There may be a smile or nod and there may be nothing.   

Maggie was in the back slamming her hand  down (her sign for no) because I didn’t have her music playing. I told her to keep her shirt on while I remedied that situation. She started laughing as Beyonce came on. I was dancing along and putting my hands up, as Beyonce ordered. I was aware of the guy next to me looking at me dancing and laughing as we sat at a red light. He was trying to make me look at him but I ignored him. I knew I looked ridiculous, I didn't need him to remind me. 

All of a sudden Maggie started having trouble.  She was laughing so hard she started to choke and her scarf was covering her trach tube making it even harder for her to breathe. I slammed the car into park and reached back to help her.  It took only a moment and I was back ready to go before the light turned green.  But the laughter and dancing had stopped for the moment.

I glanced over at the guy next to me who was staring at me completely shocked. I smiled to myself  imagining what he had just witnessed. That poor guy had absolutely no idea what had just happened. He was watching me dance around and laugh like a goofball, then my affect changed, I disappeared behind the privacy glass for a minute and then reappeared with a concerned look on my face, put the car in drive and was ready to go.  

I just gave him one of those nods you give another driver when you make eye contact, as if to say, Move along now, nothing to see here. 

For some reason he did not stay next to me for long. Shrug.

Just Dance!

A voice yelling my name at 4AM is a difficult way to start the day. Miss Maggie decided to yank out her tracheostomy tube in the middle of the night. I heard the yell and instantly bounded down the stairs, or so I thought. When I arrived I learned that the nurse had been yelling for 10 minutes. (why she didn't use the extra telephone line, I don't know).  She did get the old one back in. so Maggie was safe, but she could not get the supplies she needed to replace it and tie it around her neck. I did that in about 10 minutes and went back upstairs to bed. It was hard to go back to sleep with the adrenaline pumping like that.

This is not an unusual occurrence, in fact if you've read these posts for any amount of time, you've seen the same story before. Unusual or not, it's jarring and not something you get used to. This incident and so many others are examples of Maggie's fragility and tenuous grip on health. Even when the adrenaline slows down after an incident like this, the reality of Maggie's situation creeps back into my mind.

No one in this house lives life half way, including Maggie. You have to LIVE your life. Yes, Maggie has numerous life threatening conditions, but she lives her life to its fullest potential all the time. Sometimes folks are afraid of Maggie's health issues and we try to set minds at east as much as possible without denying the reality of her situation. 

 Recently one of the professionals working with her expressed concern about Maggie's rapid change in status. She's right to be concerned, and we have to be wise, but I don't want fear to prevent Maggie from living her life. I turned to her and said kindly and simply, "She's dancing on the edge of a cliff. Let her dance."

I don't know where it came from, but that image has stuck with me ever since. The cliff is always there, we can't ignore it and we have to respect it, but we really can't do anything about it either. I like the image a lot. In fact as I lay awake this morning and some of that fear and dread started creeping in, the image comforted me.

 Forget that hackneyed "Glass half full" analogy. I'm sticking with this one. Maggie  is dancing away and we can either watch the dance or watch the edge. I'll take the dance, thank you.

I have to add this picture because after I wrote this I remembered this picture of Steve at the top of Half Dome Last year. I think this may be where I got that image. Maggie gets her dancing ability form her dad. My wildest activity is typing fast.

    

No cram exam

We are off to UCSF for a sleep study for Maggie. This is the kind of a test I would ACE - I'm a goooood sleeper.

Maggie will be admitted to the ICU at 7:00PM, hooked up to dozens of electrodes and then she's supposed to sleep. There is no pain involved but there are plenty of interesting things to keep her awake. Preventing Maggie from yanking on the electrodes will be interesting. Getting her to settle in for the night with all the noise of the ICU and all those things attached to her head will be a trick, that's for sure. On top of that, they will be trying out CPAP (continuous positive airway pressure) into her trach. They tired this once before prior to the trach and Maggie could not tolerate it. The doctor assumes that was the mask on her face and now that won't be necessary because the pressure will go directly into her trach. Seems likely - Maggie hates things on her face - but Maggie decides what Maggie will tolerate. It's her world, we're all just living in it.

And there BETTER not be a PEA under that mattress, either.

This could be a looong night.

Language is Power

A friend  proudly posted on her facebook wall about her son’s first word.  He said “bye bye.” They tested him several times to see if he would do it again and indeed he did. That is a momentous thing. It is the start of one exercising control over what happens to them. There is a reason so many toddlers are adept at the word “NO!” They finally have a say in what they do, eat, wear, etc, because language is power.

We learn to talk and we learn to listen. We learn through language eventually figuring out how to read and write, thus conveying language in additional forms. Language is the basis of all our interaction with one another and it comes in all forms.  I cannot even guess how many spoken languages there are (or were); and yet many of us are limited to just one. The deaf, who cannot hear spoken language, learned to communicate through sign, which is one of the few international languages.

Language is just one of those things you take for granted, at least until you cannot understand someone.  Of all the disabilities and medical problems Maggie has, her inability to speak is the most difficult for me. If I could magically fix it all I would do so, but if the magic extended to fix only one thing, it would be language. She might have a different opinion on this matter, but she can’t tell me what it is, so I don’t  know.  And that’s the problem.

Before she had the trach, Maggie did say an occasional word. Her favorite was “mama” and she would say that in various tones and at various decibels to convey what she wanted. She would call me, chastise me, greet me, correct me and laugh at me all with one word.  It was hilarious. The tracheostomy tube silenced that along with her joyful laugh. I miss both terribly.  But it could not keep her from communicating

Language is just one form of communication, though, and Maggie can communicate even if she cannot speak. Communication is necessarily a two way street, it requires  a sender and a receiver.  If there’s no one to receive what you are saying, there is no communication.  Maggie is an excellent receiver. She understands everything. Everything.  In fact, if she gets any better at “speaking” I may be in serious trouble. She knows all my secrets.

Maggie does “speak” somewhat. I’ve written at length about her amazing abilities with her dynavox. She is getting more and more adept at using that every day. It is not a perfect set up, but it is a wondrous thing. The machine itself presents some limitations  and Maggie’s  ability to utilize the incredible things it does have to offer limits her even more.  The biggest limitation to it, though, is that others don’t really accept it as actual communication yet. Those who recognize the machine are amazed at her abilities, but don’t really “listen” to what Maggie has to say. The technology is still off putting for many. That will change over time as more and more people get access to this technology, but for now it is another  roadblock to capturing all the power that language has to offer. The technology  is unbelievable and it has provided Maggie  with some of the power of language.  The taste of that power, limited though it may be for Maggie, just makes her hungry for more.

I can only imagine what Maggie would have to say if she could tell me what she is thinking. Think about it. She's 17 and I have been her mouthpiece her entire life. There is an outside chance I have read her wrong once or twice. If she could call me on a lifetime of errors, I might just get an earful. 

If only.

No rest for the weary

Any mom knows how to sleep with one ear open. It's instinctual. You develop this skill with newborns and it never really subsides - because you need it again in their teenage years. I have a very finely tuned ability at this because I have never been out of crisis mode and Maggie never developed normal sleep patterns. I am up and halfway down the stairs at the slightest sound. Steve sleeps, generally unaware of the sound, my concern or my departure.

Last night was different, though. At 2:30AM the nurse was yelling for help and I heard NOTHING. I was in the deepest possible sleep. Steve, said almost in his sleep, "Sally I think Etoy is yelling for help. I was out of bed like a flash, but the house was quiet. I called, no answer. I thought Steve must be dreaming, but I went down to investigate. The lights were on and clearly something had just gone down. Maggie was white as a sheet with the oxygen turned all the way up. Etoy was pumped up on adrenaline. I was confused.

Maggie got into some strange position and her trach tube popped out. Then she started freaking out and flailing around so Etoy couldn't get it back in. She was screaming for help and I was sleeping through it. It is very difficult to handle Maggie when she's freaking out like that, She arches and flails and turns blue. It is not fun. She flops around like a fish and I swear one day she will flip herself right out of that bed. When you add in the need to get the trach tube replaced, it becomes nearly impossible.  Etoy handled it. She didn't like it, but she did a great job.

We have a phone in Maggie's room that the nurses can use to  call upstairs, but 99 times out of 100 I hear her calling anyway. Last night was the 1 in 100 time I don't hear. Things were happening so fast she couldn't step away to call on the phone.  I turned the oxygen back down to its normal level and Maggie was OK. Everything was fine and I went back to bed, but I could not sleep.I've been awake since 2:30. It scared me that I didn't hear anything, and though I should have been there to assist, I am glad Etoy handled things on her own.

Maggie went to school this morning, no worse for the wear. Etoy is undoubtedly home in bed after a rough night. I am very tired but I am sitting here experiencing another maternal phenomenon: Guilt. .

Breathing Easier

During football season, you often see a player on the sidelines sucking in extra oxygen. I never understood why that was helpful to them. They are big strong athletes in top physical condition, why do they need that?  After watching Maggie's long slow recovery, I'm starting to understand it better. It just gives the body a little boost to work more efficiently. Maggie needed it to get back to her baseline. Presumably these guys use it to stay at their peak, Since these athletes are pushing their bodies to the limit, the extra oxygen may help keep them in top physical shape throughout the span of the game. It's the same thing from two different extremes.

 Maggie's issues tend to drag on a little longer than a four hour football game, though. After 6 weeks it seems Maggie has kicked the supplemental oxygen habit. She didn't need it over the weekend, but slipped back on Monday. It's pretty easy to tell when she needs a little help because she gets quite pale and her energy level just drops. This is a pretty picture of her I took while Steve was getting the trach mask set up to give her oxygen the other day. She's not jumping around like normal so I got a good shot of her beautiful face reflecting off the light form her dynavox. It's a good example of how we know even without measuring the levels. (but we did that too)

She got sick the first week of May and basically recovered after about three weeks. But she could not keep her oxygen levels up where they needed to be. The doctor said there were likely areas of collapse. Her lungs were not fully expanding. She said it was like trying to blow up a balloon that's wet inside. It can't be done without a lot of effort and Maggie could not provide the extra effort. She was just too worn out. The supplemental oxygen gave her the boost she needed to get her strength back.

Now she's gone another two days without extra "O's" during the day. (Night time is a different story, but that's normal for her) If she needs it again, fine, but the fact that she can go two full days is a sign that this episode is finally winding to a close. And feisty Maggie is back. .

 Maybe we'll go hit the 49er training camp. She can show the guys a thing or two..

Enigmagic

We are heading up to UCSF bright and early Monday morning. Maggie has to have another broncoscopy. They will put a little camera down into Maggie's lungs and have a look see. She has to be under anesthesia for the exam, but it is painless for her. The anesthesia is the toughest part, but that is one thing with which Maggie has not had any problem. Still, it's no fun, that's for sure. No fun for her and no fun for me.

Maggie's lungs and condition is a source of great mystery to all involved in her care.She is an enigma. The trach, which undoubtedly saved her life, also creates its own set of problems. It's an irritant in an area of her body that can't really take it. We face a constant struggle to keep her healthy.

But it's no struggle at all to keep her happy.   She is the most joy filled person I have ever encountered. It is magical. I wish I could bottle and sell what she has, because people would line up to get it.

Maggie is an enigma. She's enigmagic.

The Most Wonderful Time....

Tuesday morning dawns rainy and wet. the start of several days of expected rain. Oh well, it is December, after all. It is curious to me that Christmas, Hanukkah, Kwanzaa, Yule and holidays from all the religions fall in the coldest time of the year, at least in the Northern Hemisphere. Many attend church services only this time of year when everyone is coughing and sick. Talk about sharing at Christmastime! "Hello sir, peace be with you, have some germs."

I understand that all these holiday are rooted in tradition and each brings hope and light at the darkest time of the year. I'm just saying, the darkest time of the year is also cold and flu season. Keeping Maggie healthy this time of year is particularly challenging. It always has been, but especially so since she's had the tracheostomy tube. It's like a germ superhighway into her lungs.  We are fighting off infection left and right. My hands are raw from washing.

Maggie seems somewhat healthier today. Perhaps this medication that is causing such problems for her gastrostomy tube is actually working. I had to change the tube four times last week and it's not very comfortable for her. (Usually the tube lasts more than a month). Even though we flush the tube after giving the medication, the residue seems to harden inside the tube and it becomes totally blocked. That means no food can get in and we have to fix it. Obviously I don't have that many clean tubes, so I've been washing them and re-using them, which is not cool. New tubes are on the way. Maggie has another week of this medication to go, too

Though changing the gastrostomy tube is a hassle for me and uncomfortable for Maggie I am glad the medication seems to be working. Maggie has this chronic condition that rears its ugly head periodically. There doesn't seem to be a thing we can do to fix it and the medication is simply a band-aid. We have tried various medications and not all of them work. Dealing with a blocked tube is a small price to pay if it works. Let's hope it keeps the symptoms at bay until after Christmas, at least. I'm so overwhelmed with all the holiday madness I don't think I can squeeze in an afternoon at UCSF.

Of course if we have to go, we have to go, but I would prefer if we did NOT, thank you very much. The hospital clinics are the worst place to be if you're sick. All that coughing and sneezing, it's worse than church.

Stay healthy, my friends.



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Fresh as the Morning Dew

Maggie's respiratory issues require constant vigilance. She coughs almost continuously and with the weather getting colder this will only get worse over the next few months.  Some of that is simply her anatomy, some if it is the trach, and some of it is the allergens present in the environment that irritate her airway. I can't do anything about the first two things, but I am trying to improve the dust level around here. 

Today was an all out assault. The housekeeper was here (cue Hallelujah chorus) and I also made arrangements to have the heating ducts cleaned out. I was hoping to arrange for them to come when Maggie wasn't here, but it didn't work out that way. I was concerned that the work itself would raise all sort of dust but that was not a problem. Not only was everything fine for Maggie's health, but had an absolute ball watching them. She cracked up every time they fired up their giant vacuum and attacked a new air duct. Maggie was laughing so hard that she was making herself cough and having trouble breathing. How's that for irony. 

Years of household dust and dog hair were sucked into that machine. The guy was concerned that we hadn't done this in a while. He's right. We haven't. Ever. I'm not proud of that, especially knowing what a difference it made. The Mother of the Year prize may have slipped through my fingers for neglecting this for so long, but it's done now. In fact if Maggie wasn't coughing so much I probably wouldn't have thought to do it at all. But it smells so clean in here right now, that I won't be so lax in the future.

I feel like I'm a Glade commercial.