Kids Like These

Recently “Jay”, the daughter of a friend, contacted me seeking help with an assignment she has at her university. Jay is studying to be a special ed teacher (YAY!). Her assignment is to take the facts of a case study of a child and prepare a social outing that will work in light of that child’s disabilities. That is a wonderful assignment. And just by contacting a real family, Jay is already ahead of the game.
Of course, she thought of us because the child in her study has CP (cerebral palsy) and uses a dynavox (the same communication device that Maggie uses). She gave me information about this child that she thought was revealing, but really does not tell you anything. I am willing to bet the professor did that on purpose. A diagnosis of CP in and of itself means NOTHING. It is such a wide label; it encompasses everything from a child that is slightly clumsy to one that is far more involved than Maggie is. Maggie is pretty severe on the scale, but there are plenty of kids whose motor impairment is more severe. Often people know someone with Cerebral palsy and assume everyone with that diagnosis looks that same. That is erroneous. It is as naïve as thinking that everyone with cancer looks the same.
I cautioned Jay to go by the person, and not by the diagnosis. She had to look for clues, not just labels, in the case study. The girl’s IQ was low and suggested the girl had limited cognitive skills. The raised a flag immediately. Who tested her and how did they score it? The girl could drive a power chair with her head and use a dynavox; based on those facts alone, she has a lot more going on cognitively than that IQ test would indicate. Jay’s interest was piqued. I suggested that her teacher might be laying traps that she was going to avoid just by calling us and getting a “reality check.”
I have no idea if the professor was as enlightened as I hope s/he is. However, I just have to believe that. As a parent of a child who has been defined by her diagnoses her whole life, I have to hope the next generation is smarter and more in tune with reality.
Another of my ten-thousand pet peeves is to hear Maggie or her peers described with the phrase: “KIDS LIKE THESE.” When a sentence starts with that phrase, the hair on the back of my neck stands up. I hear it all the time from smart people who should know better. People like doctors, and nurses, and teachers and more. Maggie is simply lumped in with other special ed kids or other kids who use wheelchairs, or other kids with trachs, or other kids who use communication devices, or whatever. Very very few fit all of those categories. Maggie, like every other child, is a unique individual. Dare I say, maybe a bit more unique, if that makes sense.
When these smart people use that “kids like these” phrase around me they get an exaggerated confused look from me along with a response like “girls?” or “kids like what?” Generally, that wakes them up and they focus on Maggie instead of her diagnosis. Sometimes they squirm a little bit. Sometimes I get funny looks, like maybe I do not realize that my daughter is disabled and they are going to burst my bubble. Then I just pity the fool.
However, with Jay and “students like these” getting “assignments like these” I know the tide will turn and the children who come after Maggie will be considered children first and disabled second.

Mall Rats

With a day off school, I needed to find something to do to entertain Maggie. The nurse was scheduled to arrive around noon, which gave us the whole morning to do something fun. I realize, of course we could do fun things with the nurse, but it is a different dynamic with another person along. Maggie and I cruise along without focusing 100% on tube feeding time catheterization time. I did all of that before we went out which gave us more freedom. We did what girls do; we headed for the mall.

In all honesty, I am not much of a shopper. I never have been. Generally, I know what I need to buy and go in, get it and leave. But the mall is a perfect place to hang out with Maggie. It is flat, warm and full of interesting things to see. If she gets bored, she can easily start pulling at clothes on the rack and get my attention. No time for boredom yesterday. Too many things happened.

We started at Macys. First, we ran into our neighbor Dolores, who is 80 and complains nonstop about being old. You know what? It is hard to feel sorry for someone who says she cannot do anything while shopping for her trip to Hawaii. I used to do a lot of stuff for Dolores, but stopped a few years ago. I grew very tired of her telling me I needed to get back to my “real life.” Finally, I told her that caring for Maggie WAS my real life and let her call the shuttle to take her to the airport for her various trips.

While we were waiting to pay for something at Macy’s, a couple unintentionally cut in front of us in line. I noticed, but it didn’t really matter. They were so focused on what they were asking the clerk, they did not even notice us. When they looked up and saw us there, they were falling all over themselves to apologize. The couple was probably in their 70’s and spoke English with some sort of accent – maybe Russian, maybe Eastern European. I assured them it did not matter. The woman came over to greet Maggie and asked if she could give her a kiss.
Ummm….. Really? It’s sweet, but it’s weird. This person is a perfect stranger. Generally, I would not agree to that, but something made me say yes. He gave Maggie a kiss (and Maggie screwed her face up). The woman was still talking to Maggie when she suddenly walked away mid sentence. She was crying.

CRYING!

Ok, now what do I do. It was so obvious, her lower lip was shaking and she was fishing for her sunglasses. I opted to ignore it, as it was apparent that she was embarrassed. The clerk just looked at me with an uncomfortable look and I just raised my eyebrows like “wow.” The couple left without another word. I had the feeling that the tears were not for Maggie, but rather that Maggie stirred up something from her own life. I felt very bad for her. (If I thought she was crying over Maggie I probably would have been angry, but I wasn’t)

We left there and ran into Maggie’s former teacher Sheila. That was fun for all of us. Sheila is a hoot. She always said if her students could talk, they would call her “Evil Sheila” and that always made Maggie laugh.

I was pushing the feeding and cath time so we high tailed it out of there – or tried to. The elevator was undergoing repairs and we had to go to the freight elevator in the back part of the mall to get out. We went down the single flight and that elevator door did not open for about 10 minutes. Just as I was getting freaked out, it opened. I made a beeline for the van.

We were 45 minutes late getting home. The nurse was waiting for us and worried that Maggie may be in the hospital. I was not answering my phone (in the elevator, never heard it). I appreciate her concern. My story sounded like a teenager who did not make curfew.

I do not think I will be developing any hankering to head back to the mall anytime soon – oh, wait -- I have to. The clerk from Macy's called and I dropped a check while I was there. It is waiting for me at the cashier’s desk.

Of course I did.

Gung Hay Fat Choy

Maggie is off school today. It’s Chinese New Year, or Lunar New Year to be more inclusive. I don’t know how many other places in the country get a school holiday for this, but it’s a BIG deal in San Francisco. If nothing else, there are practical reasons to close the schools. There are so many Asian kids in the San Francisco schools that would take the day off anyway, it makes sense to make it an actual holiday. Even Irish Americans (that’s us) get the day off if they utilize the public schools. I find it best to celebrate New Year in every culture. There’s always the ability to start the resolutions again.

The Year of the Ox begins and the Year of the Rat ends. Right off the bat, that seems better. I cannot begin to write about the Lunar calendar and what it means, but I have learned this week that people born in the Year of Ox may are honest, hard-working, straightforward people. Examples of these are my sister Joan and Barack Obama. If the year is anything like either of these two people, it will be a good one.

One thing the Chinese New Year means is that my high school friend, and favorite Chinese Cookbook author, Grace, comes to town to visit her parents. Grace lives in New York but makes regular visits to see her parents, and the New Year is always one of those times. For the past several years, our house has been a regular stop for her as well.

We reconnected several years ago when I was charged with tracking down classmates for a high school reunion. Because we went to a small girls school, this was not a particularly onerous task. I think I found all but about five. Further because Grace is a published author*, finding her was a snap. She didn’t make the reunion, but we managed to stay in touch ever since. She loves Maggie and faithfully reads this to keep up on all the news. Maggie just takes it in with a grin.
This time she brought Maggie a gift, a very cool t-shirt pictured here. It simply says New York City with graffitti pain splattered all over it. Maggie is very pleased with it and adopted a rather blasé teenage attitude as soon as we put it on her. I know she’ll be wearing this to school as soon as possible. It has just the right mixture of whimsy and edge that every 8th grader seeks.

Of course, she’ll have to wait until tomorrow, there’s no one there today.

So to all of you: Gung Hay Fat Choy! Wishing you all the strength of the Ox for the year that is just beginning.

·Grace Young’s beautiful books include: The Wisdom of the Chinese Kitchen and Breath of a Wok and she’s working on a new one.

Tell me More!

Maggie is always working on her conversation skills. Because she uses a communication device, back and forth communication is very difficult. Maggie is limited by phrases already in the machine or by the small sentences she can construct. The pace of the conversation is generally very slow; and those who even understand that she is trying to converse sometimes do not have the patience to wait for her to find the response she wants. Often the appropriate response is not programmed into her device, and then the wait is even longer for her to figure out a way to respond.

Accordingly, the teacher and speech therapist and I decided we needed to make pages on her device that might lend help her hold an actual conversation. It is a work in progress. Her homework every day is to have a conversation with someone and really try to use these pages and switch to constructing sentences when she has to. Yesterday I decided to sit at the computer while we conversed and I wrote the entire exchange down.

Maggie starts the conversation. My responses – or anything I say – are in parentheses. Toward the bottom, she is constructing the sentences. The “…” means she is finding the right words. FYI, the following took about 10 minutes.

(Hey Maggie, we need to do your homework. Why don’t you start a conversation with me?)

Have you seen any movies lately?
(Well, I haven’t been to the movies in a long time, but I watch movies on TV. How about you?)
That’s horrible.
(It’s not horrible, I wouldn’t use that word. It’s fine.)

What do you like to do on weekends?
(I like to go to the park with you and dad and go to the museum)

Tell me more.
(What do you want to know? We hang out for a while, and then walk over to Golden Gate Park, sometimes with the dog, sometimes without. You’re with us, so you already know.)

How was break?
(What break? I NEVER get a break.)

Laughs. “Tell me more”
(There is nothing more to tell. Mom’s work ALL THE TIME)

Laughs. Are you doing anything tomorrow?
(I am going to keep working on our financial information. I will be sitting at the computer all day. It is boooring)

Laughs. Tell me more
(There is nothing more to tell without boring you to death)

What are you doing for Spring Break?
(Well, I don’t really get a spring break, now do I?)

Who did you go with?
(Who did I go with where? That doesn’t make sense. Can you ask another question?)

Laughs uproariously.

Long break while Maggie searches through her computer pages

Mom…is…good.
(Thank you).

Dad… is… good.
(Dad will be happy to hear that but he’s upstairs right now.)

I ... am …smart.
(You are, Mag.)

Mom is good, Dad is good, I am smart. [note, once she creates the sentences they are saved on the top and she can use them over and over again until she clears it]

{Clear} I... am … good.

Mom … come here.
(Ok)

I am good… mom.
(Right-o, kiddo)

Maggie is beyond delighted with this exercise. Obviously she has a long way to go, but the way all of us learned to converse was by DOING it. She is behind the 8 ball not only because of her disability but also because she has not had the experience of participating in conversations. People talk TO her or AT her but almost never WITH her.
The phrases like “tell me more” are great because it allows the person to be engaged in the conversation, but Maggie uses it instead of finding her own things to say. Therefore, we will continue these conversations.

Every kid should be able to talk back to her mother. .

A Kiss is Just a Kiss

Kisses range from a peck on the cheek to a passionate embrace. Every human wants kisses in some form or another. We want kisses from our lovers, mates, spouses, siblings, crazy aunts and uncles, old friends and anyone else. We also want kisses from our parents (until we are about 9 years old and then again after about age 20), and kisses from our kids, even when they do not want them from us.

For most people, there is nothing simpler than a kiss. However, that is not true for everybody. For some, kissing is just another complex motor function their body cannot coordinate. Maggie falls into the latter, more exclusive category.

What do you do if your child cannot kiss? How do you kiss her if cannot stand to have anything touch her face? What do you do if she grimaces wildly every time you try to kiss her?
Well, I do not know what YOU would do, but I kiss her anyway. And she figures out a way to kiss me back.

Like many people with cerebral palsy and vision issues, Maggie has tactile defensiveness. She is just not used to things touching her and it freaks her out a little bit. Part of that is visual. She cannot really see the touch coming and it takes her by surprise. I was asking Maggie’s physical therapist for additional insight into this. She told me that as babies we explore our face, chew on our hands, eat food, and have all the normal experiences that sort of desensitize the face. As a normal part of development, we just get used to things touching our face and it does not bother us. However, a child with a motor impairment like cerebral palsy is not moving like other children and the hands are not going to the face. In addition, in Maggie’s case, she has always been tube fed so she never experienced things touching her mouth. We did many therapy type things for this when she was little, but you cannot replace the natural development of things.

Like so many other parts of her life, we have figured out how to adapt.

Now I just warn her that I am going to give her a kiss. She still grimaces, but she laughs right after. Sometimes I ask her permission and she always says yes (well, almost always). Then she sort of braces herself and wrinkles up her face. When I make the same face at her, she laughs again. I tell her I KNOW you love this. She does, but she cannot help her physical reaction to it.

As for giving kisses, that is still a complex motor function that she cannot do. Maggie almost never closes her mouth, and puckering? Fageddaboudit.


That does not mean she doesn’t give her own form of kisses, though. Maggie’s “kiss” is to put her hand on my lips and allow me to kiss it. She is like the Pope offering his ring.

Even this is a complicated motor function, but one she has mastered. Still, it takes a lot of concentration; you can see it in the picture. I swear she's happy.

It’s different, but no less heartfelt. Even if she still makes a face.

The song A Time Goes By says it best:

You must remember this
A kiss is just a kiss…

And that is plenty for me.

Sunday in the Park

It is freezing back east. It is freezing up north. It is 70 degrees and beautiful in San Francisco. I know I know; we need rain. But it’s January 18, and it is a beautiful Sunday. We went to Golden Gate Park for a walk and a trip to the museum.

Maggie LOVES the museum. We give her the choice of the brand spanking new California Academy of Sciences with its fantastic Aquarium and its cool rain forest and albino alligator, but…nope. She always chooses the deYoung Museum. The two facilities are about 50 yards apart and both about five blocks from here. We are members of both places so it is just as easy to do one as the other. I think the huge crowds at the Academy of Sciences are a bit much for Maggie. In addition, it may be too visually stimulating with the fish tunnel and the eel cave. The museum is also crowded, but there are far fewer children running around. The museum is more sedate and cultured, just like Maggie (HA!)

To do the museum properly, you have to approach a piece of art, read the title and the author to here and then tilt her chair back a few inches and let it fall back into place. This is serious fun. She probably knows more of the artists than I do, because she listens carefully for the end when she gets a little “tippy” ride in her chair. Then she laughs her head off until we get to the next work of art. At first, other people do not know how to react, but after three or four paintings, they are cracking up too.

Walking over there and back is also entertaining. The best part of all is the area off 6th avenue where there are roller skaters and people on trick bikes. There is music blaring from a large sound system that is set up in a jogging stroller. (The skaters bring it in on their skates). There are usually about 100 people standing around watching another 20 or so do tricks, speed around and just have fun. The mix of people is hilarious. There are some families with little kids and teenagers, but it is mostly adults doing amazing feats on their skates or bikes. You will see a 40-year-old guy zoom past a four year old. There is never a collision, but I’m not sure why not. It is not a roller rink, per se, but it has evolved into a de facto skating area.

We have to walk right through there but it is never a problem. Folks zoom right by Maggie and wave at her in her chair. She laughs through the whole thing. Here she is with dad just after negotiating our way through.

Today was especially festive, and it was not just the weather. People are in a good mood and excited. The music was “Celebrate” and it was interspersed with Obama’s voice saying this is OUR TIME. It was amazing. Little kids are dancing, dogs are running around, and people are laughing and skating and riding and having fun. The energy was great.

As I said, I know we need rain, but I am glad it wasn’t today.

Pass THIS Buck

I participate in the Family Advisory council (FAC) at UCSF Children's Hospital. I'm happy to pay back some of the kindness and grace Maggie and all of us have obtained from our time up there. The role of the FAC is to improve the family centered environment at the hospital. For the past couple of years we have focused mainly on the new hospital that they are building and giving input on design of patient rooms and other areas from the family point of view. It's interesting, but often I wonder how effective we are as a council. UCSF is an enormous institution and the bureaucracy is fairly entrenched. But they want to be better and I appreciate that.

There are several staff members on the council as well. Of course the staff who are willing to take part in this are already tuned in. We are preaching to the choir with them but theoretically they can pass our issues on to others. We met the other night and for the first time in a long time the head of the Childrens' Hospital came to the meeting. She's not the president but has some title right up there. She gave us an update on all the changes going on. We encourage her and she profusely thanks us. It is a love fest.

When she was done I decided it was the perfect time to bring up my issues about wheelchair access and the sign that said no wheelchairs in the lab (see entry "Access This" Friday Jan 9) Initially she gave a very kind (bureaucratic) answer about not being aware of that. I said I emailed the picture and it is coming to you but I just happen to have it right here on my phone. I showed it to her and she GASPED. It was hilarious.

She was flummoxed. She just looked at me and said "I don't even think that's legal, is it.?"

Ummmmmm no.

She quickly regained her composure and bureaucratic veneer and said "I am getting this off to the head of ambulatory care TONIGHT! This will be taken care of immediately!" I believe her, getting information to the right person is usually all it takes.

Still, I just smiled and said, "maybe part of the problem is they think the care is only for the ambulatory patients."

They work so hard to be politically correct and here was a conundrum. Now I was only kidding with that one, but I may have started something.

I have to admit that was a little bit fun.

This BUGS me!

Maggie has had a stubborn infection for over two months, maybe longer. She first tested positive for this particular bug in September. It was back in November and has been with us ever since. Ir it has gone and come back. Is it stubborn or recurrent? Who knows? We have tried six different antibiotics. While she is on them, she is fine. As soon as they stop, the symptoms start again.

I tried several times to convince the docs of this, but it fell on deaf ears. All I heard was “no, she’s just getting one illness (read: “cold”) one after another.” I don’t think so. At this point in caring for Maggie, I do not run to the pulmonologist for a cold.

After the last culture grew the same bacteria AGAIN I left a lengthy message about the pattern we have dealt with over the past 60, 90 120 days. They are paying a little closer attention now. Maggie is on three antibiotics. And right now, she is fine. (Ask me when they finish but that will be 21 days.) We are attacking this bug head on.

On Friday afternoon, the nurse from Pulmonology called and very gently suggested the possibility that the bacteria could be here, in my house. Whaaaa? My first thought was, “ Of course not. We take excellent care of her.” And indeed, we do. But the nurse asked, "How often do you change the tubing?" The bacteria could be living in the tubing, especially the tubing that is wet. Well, we change it regularly, of course. How often is regularly? Uh, every couple of weeks. But not the oxygen tubing. That’s less frequent. Oh, am I supposed to change that too? Oh, should I try every week.?

I agreed to consider the possibility.

I have not thought of anything since.

EWWWWW. Of COURSE, it is possible. And, dare I say, probable. Again, EWWWWW.

So now, we are “CSI, stenotrophomonous.” Where are you little microbe? You can run but you cannot hide. Well, yes you can, but now we are looking. Talk about a needle in a haystack. This is more like a needle in a field of hay, or several needles in a field.

Let me just list the tubes in Maggie room. All are on a sliding scale of possible suspects. No that is too ridiculous; I will categorize them instead. There are several categories:
1) the “not likely” which includes gastrostomy tubes and urinary catheters;
2) the possible, including nebulizer tubing and suction tubing;
3) the very likely, oxygen tubing, mist/corrugated tubing, and
4) the obvious: suction catheters (three different types).

In addition to all of those, there is the water in various containers. The water for the mist and the waterthat we clean the suction stuff in and the containers in which both sits. There is the little bag that works with the mist machine to collect the additional water.

All are on my hit list. And there are probably 15 other things I haven’t considered.

I’m sorry; I know this is too much information. But this is how my brain has been working for the past three days. I am a woman on a mission. I have boiled water, vinegar mix and attitude and I am not afraid to use ANY of them.

Be afraid little bug. Be VERY afraid. Your days are numbered.

Face this

Yesterday morning Mag and I were going through the morning routine. I was chatting and asking her questions. She was laughing and answering "Yes" and "No" with her hands. She was headed to the museum with Dad and was excited and happy. She was having so much fun I grabbed the camera. This was her smiling face:

Then I asked her if she had fun visiting her friend on Saturday. Her friend had surgery on Tuesday and is in the hospital. Maggie and I went up there to visit. The child is doing well, but there is pain, for sure. She, like Maggie, cannot talk and uses a wheelchair. When they tried to move her to the chair, her pain was obvious. As soon as I brought up the visit, Maggie's whole affect changed. She stopped laughing and looked at me like this:

She was trying not to cry. I still had the camera and asked if she was worried about her friend and she gave me a very slow "yes"response. I reassured Maggie that her friend was on the mend and that she, like Maggie, is a tough chick. That cheered her up a little.

I'm sorry that I made her sad, but I'm so proud of her for worrying about her friend and for her ability to convey that. She's was laughing again in just a couple of minutes. Don't worry.

You can tell why it's not hard for me to understand her. She's pretty clear.

Drug Wars

The first full week of 2009 is almost over. It’s been a wild one in Maggie’s world. We started with no night nurse on Sunday night and I have been discombobulated all week long from staying up all night. I am fine and rested, but today is the first all week that I do not feel like I am operating in an altered universe.

However, the universe is a bit altered. Maggie is still not well. There was the overdose to consider and the underlying issue itself.

Which witch is which?

I hope that there are no lasting effects from the overdose, and that yesterday’s blood work will establish that. Nevertheless, Maggie continues to fight this stubborn bug. It seems resistant to every antibiotic, which is, of course, not good news. She is not “that sick” but she is not herself either. The doctor gave me the name of the bacteria. I should know better than to Google medical and scientific terms. Yikes! Scary stuff. But even though I’m a fairly sophisticated medical consumer, I don’t understand half of what I’m reading there and cannot make the very important distinctions between Maggie’s situation and the gruesome things that get published.
Therefore, I clicked off that and played free cell on the computer for a while. That always relaxes my brain. There is something about the order and planning of the game. It has the same effect as crossword puzzles. But I can win at free cell. I always do a crossword puzzle half way and stop because I have other things to do (oh … and it gets too hard)

I have been to Walgreens about six times this week. There are refills of some prescriptions and two new antibiotics to retrieve. One was ready one was not so I will go back again today. I believe there are currently 15 or 16 prescriptions for Maggie. She uses all but three every day. The antibiotics are (relatively) temporary and the other three as “as needed”. Any way you slice it; there are a lot of drugs going into her body.

Believe me when I tell you: You do not want to get behind me in line at Walgreens.

I have run into a friend there a couple of times and she marvels at the service I get. She says they all run around because “Mary Margaret’s mother is here.” To be honest, I don’t even notice. She told me she is surprised they don’t just let me behind the counter to help myself, and I responded that my life would be SO MUCH EASIER if they would. I could just sweep the drugs off the shelves and into my giant shopping bag.

I have to say, though, I do get excellent service from this store. They are compassionate, caring, and very efficient with my unusual insurance situation. I have developed a nice friendship with one of the women and always look forward to seeing her. On the other hand another woman there will do anything possible to avoid having to wait on me. She sees me in line and waves me over to the “drop off” window. If there is any type of delay or issue with the RX, which happens often, she does not want to deal with it. While there may be a problem with one med, I am generally picking up several. I did it once, the “drop off” people explain the issue, and then I have to get back in the "pick up" line, at the end, to get the rest. Now I just smile, shake my head and stay put because I am not falling for that again. Even that is entertaining at this point. Aside from her, everyone that works there is great.

I am very aware that I could not care for Maggie at home without the support of everyone, including the helpful folks at Walgreens.

Even the one who doesn’t want to wait on me. She makes my (almost daily) trips to the pharmacy fun.

Access this!

Busy morning around here. Maggie needed blood work done so I had to cancel the bus, take her up to UCSF and then drive her to school. No big deal really, but first we had to retrieve the car from the Office Max parking lot where it had been stuck since yesterday afternoon. Mission accomplished, and it’s just 10AM. I just have to remember to pick Maggie up after school. She cannot take the bus home because she needs to have the nurse with her and the nurse met her at school today. Hence, the nurse cannot ride the bus here because her car is at school. La la la la round and round we go. .

UCSF is an amazing medical complex. The two hospitals are 14 stories each, and there are also medical buildings, medical, nursing and pharmacy schools and all the necessary support those require. It is so big it actually has its own zip code. It is a confusing interconnected set of buildings shoehorned into a space never intended to have so many buildings. There are very old buildings and very new buildings, but, as with any medical center or university setting, space is at a premium.

The care at UCSF is as good as medical care gets in this country or any other. Not everybody is as fortunate as I am to have this level of care so close to home. We have met people from all over the country, and from other countries as well, who travel to UCSF for their care. Maggie and I, on the other hand, are neighbors of this great place and know the best times of day to snag parking.

UCSF is in the process of building a new children’s hospital at another site. It will not be finished until Maggie is out of pediatrics. The UCSF Children’s hospital needs its own identity. It is currently housed within the main hospital. It also needs more space.

This morning we made our way to the lab before 9AM. There was no one in the waiting room. SCORE! But there was also no one in the lab. We put our paper in the tray and sat down. The phlebotomist came in and immediately gave me attitude. Before I could even say good morning, or nod a hello he said, “You’re not first, those people were waiting ahead of you” pointing out into the hallway that spills over from the waiting room of the urgent care department. I respond: “Ok, that’s fine we just put our paper down and we’re waiting. “ His rather terse response was, “Well they get to go first; I will take them before you.” Now I’m a little miffed and said again, [with my own attitude] “ok, I’m just sitting here”.

The other child, also extremely disabled, is sitting in her mom’s lap out in the hall. Mom carries her in and smiles at me somewhat knowingly. I smiled back but I am still perplexed at the whole exchange.

While they are inside, I notice this sign:

Oh.

I do not know how I missed that sign, but I would never expect to see it. Perhaps that is because it is in violation of the law. He does not want wheelchairs taking up space in his waiting room. That is why the other woman was in the hall and that is why she carried her child in.

Pshaw. Homey don’t play that.

When Maggie turn was called, I wheeled her in and of course, there was no access.

He said without looking up, “you have to take her out of the chair and carry her over here.”
I just said, “No. You will have to come over here.” Then he looked up, and I smiled sweetly.*

And he did.

In fairness, the person does not have much room and that is something to take up with the higher ups. However, he cannot make wheelchairs off limits or expect parents of teenagers to carry them into his lab for blood work.

This is a medical center; they need to make it accessible for everyone who needs care. And guess what, someitmes people in wheelchairs need medical care.

I'm smiling sweetly again.*

*I told my sister this story and she said "ooohhhh, I know that smile" [It might not be that sweet]

The Sounds of Silence

Assuming one tells the truth, the most direct way to communicate is by talking. People will understand you fast and best you say what you mean and mean what you say. However, communication takes many forms; talking is just one of them. We use non-verbal communication all the time, whether we realize it or not. A raised eyebrow, a shoulder shrug or even a facial expression can reveal more than words ever could. We “read” posture, expressions, and gestures to understand the people around us. Anyone with a pet relies on non-verbal communication. We also communicate with sounds other than actual words. We giggle, sigh clear our throats, drum our fingers and do dozens of other things just like that. We find ways to communicate because we need to connect with one another.

When Maggie was younger, I knew if I could change only one thing about her disabilities, it would be her inability to talk. The wheelchair was no big deal, the feeding tube, catheters and even the diapers were manageable. I would have her be able to talk to me. If only she could TELL ME what she was thinking, feeling, etc.

For various reasons I do not really feel that way anymore. Things have changed over time. My fears are more profound as are her needs. If I could only fix one thing, I would have her be able to BREATHE. As she got older and a bit bigger, her disabilities overwhelmed her respiratory system and she needed the tracheostomy to survive. Breathing is more important than talking. In addition, though, Maggie does not need to tell me what she is thinking; she communicates it in other ways. And I understand her.

Communication is, by definition, two ways. One party has to receive what the other communicates. Maggie’s receptive communication skills are excellent. She understands words, nuances, moods and every other form of communication. It is not automatic with strangers (for Maggie or for any of us), but for people she knows, she just “gets it.” She easily demonstrates her emotions by facial expressions, gestures etc. She uses her communication device as a tool as well.

The one thing Maggie cannot use is verbalization. She used to, but not anymore. Her “voice” is silent. Her laugh and cry are silent. She used to screech for entertainment, but that too is silent. The placement of the trach means air that would generally go through the vocal cords (and produce sound) is coming out through the tube. If I hear any sound from Maggie, I spring into action because I know one of two things is going on. Either the trach tube needs to be cleared, or worse, the tube has dislodged. It was freaky at first, but not so much anymore. It is just part of who she is. It is ironic, though. I used to wish she could talk and now any sound from her means she needs help.

Maggie has found things to substitute for her voice. If the communication device stops working, Maggie just bangs on the tray of her wheelchair. If she wakes up and someone is not right there staring at her, she kicks the side of the bed until someone comes to her. She communicates her wants and needs.

I miss a few things. Maggie had the BEST laugh. She would laugh so hard she would have to stop for air and it always ended with this gleeful sound as she got the air she needed. I would love to hear that laugh again. She still laughs, but it's silent. Once in a while we'll hear a little peep if she gets into a certain position, but other than that, it's silent.

Maggie was able to say one word before the trach placement. The word was "mama." She used it to get what she wanted, to communicate her pleasure or displeasure, changing tone and pitch of her voice. If I was not home, she said it in a demanding way that was “Where is she?” If I walked in, she said it in a jubilant way, to welcome me back. If she wanted to bug me, she said it over and over and over and over again.

You know what? It never really bugged me. I would give anything to hear that again.

We communicate fine without that one word, but it was always nice to hear.

Ahhh....

Ahhh. I slept for 12 hours. I stayed up all night Sunday doing the night shift for Maggie, but it was a last minute thing, so I didn't sleep in preparation. Yesterday morning I slept for only about 3 hours. It's too hard to sleep in the day; the phone rings, the doorbell rings, etc.

I thought I could catch a bit more in the afternoon, but it wasn't to be. I just hit the hay at 7PM. I woke up at 1:00 thinking I had really screwed myself and was now AWAKE for the day, but after patiently waiitng for about 45 minutes, I drifted back to dreamland. Hopefully this will put my system back to normal. We shall see.

One place I really notice sleep deprivation is driving. There were things that had to be done yesterday so I had to drive. I was sure that folks were drifting into my lane etc. After about the 5th time I thought, hmmmm, maybe it's me. I was slightly paranoid while driving, probably because it actually took concentration and my mind was like pudding.

You've been warned. If you know I haven't slept, stay away from me on the road. I'm easy to spot, I'm the one going 10mph in the slow lane giving everyone else dirty looks.

___________________________

Switching gears.....

Today is January 6. Two years ago today my dad passed away. I just want to take a moment to acknowledge him. He was a wonderful man, husband and father. He was the patriarch of this huge family in name and in action. His passing left a huge hole for all of us, but over the two years, the hole has filled with wonderful memories and stories, so the pain of losing him hurts a little less all the time. His legacy is in the happiness of his 7 children and their spouses, his 20 grandchildren (here are 14/20 of them) and his 3 great grand daughters.

My mom, who misses him most of all, has taken over as head of the family with class. She makes it look easy, but we all know it isn't.

She and I are going to lunch together to honor him. We should probably hit one of his old haunts. There are about 100 of them in the city.

It's 4:53 AM. I'm the night nurse. Arrrrgh. And it's all my fault. Maggie's regular night returns from vacation TODAY, not yesterday. I've been so confused about the days of the week, I just spaced. And of course about 15 minutes before she was supposed to arrive, I realized it was the 4th, not the 5th and I said, "you know Steve, I don't think anyone is coming." Can't blame anyone but me, though. I could have easily filled the shift....Oh well.

Right now Maggie's meds are being delivered via nebulizer while she sleeps. Her three meds take over an hour. I just threaded the cord through the side of the bed and attached it to her trach mask and voila! I don't have to stand there holding the nebulizer for an hour. Two meds are going in now and I will add the third when those finish. The third med is the crazy expensive antibiotic that is so strong I'm supposed to wear a mask while it's being delivered so I don't breathe it in. Or I can sit here, five feet away and outside the door. She just has to stay asleep for my evil plan to work. Quick break to change things. #3 med is going now. Fingers crossed she sleeps.

I did fall asleep for about an hour, and then woke with a start, sure that she was not breathing. She was fine. Maggie really does kick the side of the bed when she wants something, including suctioning. Of course there is a chance that she wouldn't be able to do that, so I don't sleep usually, but I didn't get any sleep in the evening because I didn't realize I would be doing the night shift until it was too late. I don't want to hit the coffee now, though. Steve will come down about 6:AM and let me sleep for a while.

Fortunately Maggie returns to school today so if her gets her on the bus I can sleep for three or four hours. I have to bring the power chair back to school, but I can do that around 11 and get four good hours of sleep first. I should be able to sleep again from about 1 to 3 if I need it, so I can function until an early bed time. Generally today will not be that bad, but I am good for nothing tomorrow. I have learned to sleep as much as possible today so that the "hangover" effect doesn't drag on for too many days. I am old and need my sleep schedule. Pshaw, old has nothing to do with it. I couldn't stay up all night when I was in college either.

You need to see her new bear. It's employed as the tube holder fright now ( I wedge the bear so that the nebulizer can rest in one place and deliver the meds properly. Otherwise I'm just spraying stuff out into the room.) But the bear itlsef was a gift from a friend who came over yesterday. My friend, who is gay, wasn't sure that Maggie had any gay toys, so he gave her a "Pride Pal". This bear is wearing a leather jacket, armband and hat and has pierced ears. But the earrings are handcuffs. It is hilarious. Maggie loves it, especially because she loves the guy who gave it to her. We named it last night. I suggested Gaylord, but Maggie said no. I tried several different names, including Biker Bear, but all were nixed. She finally said "yes" when I suggested Papa Bear. So that's the name.

This is taking me about an hour to type because I have to keep getting up to deal with Maggie. She's still asleep, but she knocked my set-up over so I had to reconfigure things. So I decided to take the picture after all. Well I'm off to administer the other four meds and get her dressed and ready for school and then hit the hay.

Don't call here today. I'll be sawing logs.

update

Thank you everyone. Maggie is fine. The doctors wanted us to come up to UCSF becasause there is a chance of liver and kidney problems. Yikes. They did tests for many different problems. SHe was essentially poisoned by that idiot yesterday, but it appears her system handled the overload. I still have to watch out for a few things, but her personality is back and I am much calmer.
I received comments all day. I just received a new Blackberry storm for Christmas and every time I got an email it *dinged*. We were at Urgent care for three hours and it was ding ding dinging the whole time. It made me smile. Everytime we heard it *ding* I would say to Maggie, "oh oh, Mag, someone else is mad at that stupid nurse." and I would shake my fist in front of her. She was CRACKING up. Of course she kept turning bright red which was a little freaky, but her system was just doing its thing.

The nurses at UCSF were outraged at this error. One of them asked if he was drunk. Gah! No, he wasn't, but it WAS New Year's Eve night/New Year's morning......... And to answer the question that many of you asked - No - he won't be coming back. The mistake itself was really unforgiveable, but the fact that he KNEW he did it and didn't tell me is unbelievable. I spent the day with a very sick child and I didn't know why. Fortunately, treating the symptoms was sufficient in this case, but that was dumb luck.

Besides if he walks back into this house I think my husband and Tim will be ... less than gracious. (Eddie would too, but he already left to go back to Reno.)Thanks to all of you

Spoke too Soon

I should never have discussed Maggie’s good health and her ability to stay out of the hospital for all of 2008. No. She is not in the hospital, but 2009 did not start out well.

The nurse left early on New Year’s Day. I was up at 6AM. Maggie was awake, but just barely. I worked on my computer just outside her room and let her drift back to sleep. I suctioned her every few minutes, but she was really sleeping. For a long time. I started to get a little concerned because it was so unlike her. I wrote that I thought she was adjusting to her teenage status. Nope.

When I started her morning routine at 9AM, she was already a bit listless. Not enough for me to freak out about, but noticeable. Without getting too graphic, there was a serious – and I mean serious -- diaper situation. Two loads of wash serious. Worse than I have ever seen with her. Steve and I tried to clean her up but this was too much. We had to just carry her to the shower chair and hose her off. She remained listless. We had several more incidents like that. We just treated the symptoms with pedialyte and over several hours she perked up more and more.

At 6PM the afternoon nurse went to give her the antibiotic and noticed a problem. The brand new bottle that we opened last night was empty. The night nurse gave her the entire bottle – 60ML instead of 5ML of Cipro. He confirmed it when I talked to him. He realized he made an error but didn’t think anything would happen – and he didn’t tell me before he left. That is 12 times the dosage. Of course her body is going to react. Sheesh.

How could this happen? There are orders in the chart specifically listing the proper dosage. Moreover, commone sense should kick in at some point. No one take 60 mls of an antibiotic. That is two ounces. The largest adult would not take that amount. I know it’s a mistake, but it’s a mistake that could have been disastrous.

She is lucky it was just diarrhea. It could have been much worse. I called her pediatrician, who is a good friend of mine to ask if there was anything else we should be worried about. She wasn’t even the doctor who prescribed the cipro and it’s New Year’s Day – but I can call her anytime, which is an incredible gift. She talked me down and told me things that *might* arise. I am on alert, but was not too worried at that point.

Again, I speak too soon. At 11:00PM last night Her fever spiked to 102.4, which is the highest she has ever had in her life. Also we have to take her temperature under her arm so technically it’s a bit higher than the read out. Considered the emergency room but decided to see how the night went. The fever came down a bit with Tylenol, so I thought it was safe to stay here. We can pretty much do it all here and Maggie is less freaked out. She has a one to one nurse with her here, which is better than I’m going to get in the ER. The nurse was gong to wake me if ANYTHING changed for the worse.

I slept for a few hours with one eye and one ear opened. Not very restful but better than nothing. The fever is gone for now, and her heart rate is down out of the stratosphere. I have to call Pulmonology today to see what to do next. She’s supposed to be on that drug for another week, but I don’t want to give her any more of it until her body recovers from this overdose. I suspect they will tell us we have to head up to UCSF this morning, which is not what I want to do, but it’s better than sitting here wondering.

I cannot let my guard down for a minute. It is exhausting.

New Year

Happy New Year all. 2009 has arrived full of promise and opportunity. Hence, I promise to get back to regular posts on Monday, unless i find the opportunity before then.

I really rely on Maggie's school day to get to things. When she's home on vacation, she wants my full attention. Even when the nurse is here.



She's been sleeping a lot this vacation. I've been up since 6 when the nurse left. Maggie was awake when I got up but fell asleep shortly after he left and been sleeping since then. It's almost 9:00 now. She did this yesterday too. Perhaps she's just changing her sleep patterns to adapt to her teenage status. She's sleeping in. Of course sleeping here is better than passing out at school like she did in this picture.