Thursday, April 29, 2010

Accesible Rhododendrons

I decided to take the dog for a walk in Golden Gate Park before Maggie gets home from school. Once she is here time just slips away. Between the rain and the painters, it has been difficult to find any time before Maggie gets home; but I cannot let another day go by without getting him out and about. The painters finished the touch up stuff this morning and the sun is shining.

We wandered through Rhododendron Dell. If I was asked what flower makes me think of San Francisco, I would have to say Rhododendrons. My  mother has a huge bush in front of her house and many many other houses do as well. Not ours. We've tried, but we kill them over and over. It's a good thing, then, that we live so close to Rhododendron Dell. 

This part of the park has been undergoing renovation for months and months, but today we found the gate opened and in we went. There have been back ways to access it during construction, but I rarely did. Ten years ago and past this Dell was a spectacular place filled with rhododendron bushes. There were solid flowers of all colors for several acres. The trees and shrubs aged. When a huge storm hit several years ago a lot of them were wiped out, along with many trees that shaded the whole area. There are still a lot of Rhodos in there, but not like before. The workers have done a ton of work to allow it to return to its previous splendor. It will be fun watching to come back over the next few years; but even without the wall-to-wall flowers of yesteryear, it is still lovely back in there.

I was very happy to see how much work they did to make the whole area accessible to wheelchairs, too. Before it was unpaved paths, that worked all right when it was sunny and dry, but if it rained at all you could forget that whole area. Now it is not only paved but it is clearly marked with signs for wheelchairs including the degree of slope on the various paths. There is nothing worse than heading down a path or into an area and finding out it is a dead end for wheel chairs. Steep up or downgrades can effectively be a dead end so that information will be helpful to many. I do not really know what at 18% slope is, but I would figure it out pretty fast if it were too steep. Since there are loops to this area, you can easily find an alternate accessible path. I have never seen that information before and I think it is thoughtful and thorough to include it.

Not everyone will notice the accessibility and extra effort because it does not affect them and it blends in perfectly. Since I am always complaining about lack of accessibility, I thought it only fair to tip my hat when I see something working.

Wednesday, April 28, 2010

Mystery Date

This is the email Maggie just sent to her brothers

Hello brothers,

Would either or both of you consider accompanying me to my prom on May 21? I will probably only stay about an hour and you guys can be off doing your own thing. If you don't help me out I will have to go with Mom (gah!), Dad (please!) or Nurse Lucy. Mom said I can't go unless someone who knows how to suction me comes along. You both know how and I've seen you two clean up nice, so I thought I would ask. Most girls wouldn't be caught dead asking their brother(s) to the prom, but as you know,  I am not most girls. I have several boyfriends but they don't drive or use the suction machine. You don't have to get me a corsage, because even if I'm not allergic to it, I will rip every petal off in about 30 seconds.


Your sister Maggie

Sunday, April 25, 2010

Monkey Monday


Time to get back into the swing of things. The best way to to that is to have a strong cup of joe from my new Monkey cup. It's amazing -- I drink coffee and immediatlely start swinging from the scaffolding.

This weekend was great. Any weekend that starts out with a gift of a monkey mug can only be great. My sister Mary gave it to me because 1) we've had a rough go the past few weeks/months/years and 2) I love monkeys and chimps. You have to love the handle.

On Saturday we took Maggie to Golden Gate Park with Aunt Mary and made another visit to the Academy of Sciences. Sunday we went for a walk at Crissy Field. The weather was INCREDIBLE. There were a million people there and everyone had a smile on their face. Maggie pointed out the bridge for confused tourists (uhhh - it's RIGHT THERE!)  and posed in front of Alcatraz with Dad.

Saturday was #1 son's 22nd birthday. That is unbelievable to me. I know he had fun and I'm glad, but I miss the days of birthday parties with a bunch of little boys running an obstacle course or heading to the "Big Park" (the playgournd in Golden Gate park). Now the parties are different and I'm no longer invited. Ahh well. I'll just drink out of my Monkey cup and all will be well.

This week will see the completion of the house painting. It's 95% complete now and it looks fantastic! It has given us a renewed interest in things. I will post pics when the scaffolding is down.

Thursday, April 22, 2010

Day Tripping

I went on a field trip with Maggie's class today. We had a great time. Most of the school is taking the California Standardized tests this week, so school is pretty dead for the non standard kids. Ms. Taylor, the teacher, planned to take them on public transportation to The California Academy of Sciences in Golden Gate Park. As luck would have it, that is only about 6 blocks form here; hence Maggie slept in, skipped the bus trip and we just walked over to meet the other students and the adults assigned to the class at 9:30AM.

The Academy of Sciences is an amazing place (,For a few years the place was closed for remodeling/rebuilding. We went through withdrawals while we anxiously awaited the opening of the new one. Now it's bigger and better than ever; there's an aquarium, planetarium, pendulum, rainforest, alligators, snakes, and stuffed wildlife or all types. Right now it's "extreme mammal" month.( I'm not sure if those are mammals who ride mountain bikes or what exactly.) Because we live so close, we always buy a membership. .

With my membership I am allowed to bring in a couple of guests; another person had a membership too, so almost no one had to pay today. That worked out well.

The displays are amazing floor to ceiling tanks. The penguins were especially rambunctious and kept coming right up to the window where Maggie and Juan were standing. There were lots of other kids there too, but three or four penguins were hanging around only these two. Check out the picture. It looks like the kids can touch the penquin, but there's about five inches of glass between them. We were joking that the penguins were interested in the wheelchair and Maggie's communication device because it was something different and interesting for them.

The kids were split into teams and assigned a list of things to find. We knocked off the albino alligator, whale skeleton, and penguins and pendulum in nothing flat. The butterflies required a trek through the rain forest - and you're not allowed to leave until you're checked for hitchhiking butterflies. The rest of the items, seahorses, the tidepool and the anaconda were down in the aquarium.

Maggie's favorite thing were the two interactive simulations of being squeezed by an anaconda and being shocked by an electric eel.

Maybe Maggie is the extreme mammal they're featuring.

Wednesday, April 21, 2010

Rain Rain Go Away

I like rain. Really I do. California has been on the fringe of a drought for many years – never quite enough of a snowpack to give unlimited access to water. All this precipitation - rain here and snow in the mountains - means a relief from the drought and perhaps a little breathing room with the reservoir levels. The rain, therefore, is necessary and good.

Except for those people, like us, who are painting their house. The painters cannot work in the rain and the house has to dry for a day or so after it rains before they work again.

In the 22 days since the scaffolding went up, I think the painters have been here five days. They scraped and prepped and it rained. They came back several days later and put on some hideous primer (BRIGHT turquoise) and the next day it rained. The primer stayed on for a long time and neighbors were asking politely, but with concern, if this was the color we were going with. I assured them it was not. Once they heard that the relief was palpable. My friend and neighbor Debbie said she was glad, “the color was rather…Caribbean”; that made me laugh.

On the days they are here, the guys are very friendly and nice. They see Maggie’s bus coming and they scamper down the scaffolding to move ladders and drop cloths so she can get in. She waves happily at them and laughs when they are on the scaffolding. We watched three of them climb up together the other day. For some reason they go up with their back to the scaffolding, facing out onto the street. They obviously have been doing this for a long time because they can do it really fast. They look like monkeys and it is very entertaining

After a couple more days of work interrupted by rain and dry out days, the house is starting to take shape and it will look fabulous, but it HAS TO STOP RAINING. They came this morning. YAY! The skies are threatening again and rain would ruin any work they started. Nelson, the foreman, asked me if it was going to rain, and I said it is not supposed to, but it sure feels like it. I moved the nurse’s car out of the driveway and they were going to concentrate on the back of the house. Steve asked me if I was sure it was not going to rain. I just shrugged and said, “You know, I’m not God.” (He was shocked at this news.) After about ten minutes the painters left saying they were leaving to go scrape another house. It’s the right decision, but ARRRGH!

Soon the famed California sun will come out to stay. The best weather in San Francisco is generally in May and the first part of June and then again in September and October. May 1 is just around the corner and I hope to have a freshly – and completely - painted house to welcome the sunshine.

I have to go put the nurse's car back in the driveway.

Tuesday, April 20, 2010

Going down?

 Everything Maggie needs she needs for her day is loaded on the back of her wheelchair. Loading it is an art form unto itself. In order to push the chair comfortably, or even to fit in the elevator, things have to be placed in the proper order. Today I was not attentive enough and we had trouble getting the elevator door closed. I need to go to grocery bagging school to improve my technique.

The back of Maggie’s wheelchair is a crowded place. Two bags are always on there. One has the emergency resuscitation bag, which has to be kept close at hand. (There is another hanging off her bed). Fortunately, we have never had to use that, but it will always be there because as soon as I remove it, she will get into trouble. The second small bag contains a spare trach and all the necessary supplies should we need an emergency trach change. That one we have used several times. You just never know when she will pull out her trach or break the ties, so we are at the ready on that one.

The next three things are big. There is the communication device, which is a bit larger and heavier than a laptop. That goes in the briefcase like bag. Every morning we have to fill the portable oxygen tank and that goes on next. The strap on that tank is a little too short and it sometimes sticks out at a strange angle. If it’s don’t right, the O2 tank will fit in the space just above the briefcase bag which has a longer strap and hangs down lower. Finally, the suction machine goes on last because we need that every two minutes. It is easily accessible because it is open to the person pushing the chair and doing the suctioning. Fortunately, there are anti tip wheels because without them, the weight of her supplies would pull the chair over backwards.

The force was not with me this morning and I was struggling to get the elevator door closed with all the equipment sticking out at various angles. You can swee in the picture (from a differen day) how tight the space is in the elevator. I get in first and pulled Maggie in behind me. By standing on my tiptoes and twisting my body just so, the door clicked shut. I held the down button for the 90-second ride down feeling as if I was in a game of twister.

As we were slowly descending, I looked up the open shaft to the rapidly darkening sky and said, 'you know what is going to happen, don’t you Maggie. There will be a downpour and this elevator will stop and I will be stuck in this position forever." She thought that was hilarious. I did not.

I did not have my phone with me and Steve was upstairs in the front of the house. He would never hear us yelling. In all likelihood, the neighbors would hear, but they would not be able to see us in the shaft and presume everything was all right.

For once, the worst did NOT happen. We made it to the bottom. The downpour started the second Maggie loaded onto the bus. I was soaked in about 30 seconds. She was looking out the window of the bus laughing at my dripping jacket and hair. I’m glad she had SOME entertainment before her school day.

Monday, April 19, 2010


We are trying to find our rhythm here. After the illness and passing of Steve's mom and the unbelievable whirlwind of activity preparing for and attending her funeral services, everyone is knocked off their game a bit. It was exhausting physically and emotionally, but it was lovely.

All the activity revealed yet another flaw in our system. It was frustrating that I couldn't be fully present for Steve and the rest of the family. I kept leaving things before everyone else because I had to get home to Maggie or take Maggie home. The nursing situation works fine as long as I stay home to assist and/or fill in, but it does not work for any change in the (very dull) routine.

  I need to find someone who can occasionally drive Maggie and her nurse to things so that I can fully take part in other activities. The problems are not only the additional expense, but the logistics. It is so difficult to coordinate and orchestrate all the things Maggie needs that the thought of adding another layer is too much to consider.

We need to figure out a way to get more breaks. In Maggie's 16 years and one month on earth, Steve and I have been away alone together a total of 4 nights. When I get the energy we will have to do another night, but it's 18 hours of work for 24 hours away and the hassle factor is daunting.  Taking Maggie away with us is not a realistic option at all. She cannot fly anywhere because of the amount of equipment we would need to take. Even if we take a road trip we would either have to pay for a nurse to accompany us or I would have to be "on" round the clock. Neither option is doable and frankly, I'd rather stay home.

Caring for Maggie is becoming increasingly difficult and getting any breaks from the routine or time away for ourselves is nearly impossible. When I cannot orchestrate being fully present for my mother in law's funeral, you can only imagine how difficult it is to steal any time away for fun or recreation. This realizatiion may have been a gift from my mother in law to show us that we need to make changes so that we can live our life and tend to other facts of our existence as well.

Now if I could only figure out how to do that, or find a pot of gold, we would be sitting in tall cotton.

Tuesday, April 13, 2010

Goodbye to Grandma

I just received an email from one of my loyal readers asking if everything was ok because I haven't posted in a few days. That was sweet. It's nice to be missed.

Maggie is fine, but things are not OK here. Maggie lost one of her her biggest fans.

My mother in law, Branca McDonald, passsed away Monday morning. She was a lovely woman and adjusting to this loss will take a long time.  Her passing was not unexpected, but no matter how prepared you think you are, there is shock and sorrow when the time actually arrives.

Over the past weeks, I watched my husband, his brother and his sister care for their mom and help their dad in innumerable ways. This is not surprising because that's how this family has always operated. And they learned that from their mom. Ed, my father in law, also exudes this quality, but Branca was something else when it came to family. "Family first" doesn't begin to describe it. It's more like "family first, middle and last."

This line from her obituary probably sums her up best: "Full of life and spirit, Branca loved living in Pleasanton; she loved her Church, her family and friends, flowers and everything positive. She had a smile, a hug and a prayer for everyone and finished every conversation with “ I love you.”

So I may be absent a bit this week as we all prepare to give her the send off she deserves.  If you pray, please include her and all of my husband's family. Branca was a very religious woman and she will appreciate it.  If you don't pray, just send some positive thoughts for this lovely lady.

We will miss you Grandma Branca.

Saturday, April 10, 2010

Can I park here?

I had to buy a case of diapers yesterday. Maggie gets diapers from the state but it's not quite enough to last the whole month. She uses 8 - 10 diapers a day (don't be jealous of me or her) They send two cases, but we probably need 2.5. . so I have to augment the supply with a case every couple of months. We were down to one pack (about a day and a half) and the supply wasn't coming until Monday. Time to stock up.

There are a number of retail medical supply companies around here so it's easily done. The one I use is on Clement Street. Clement Street is a very busy retail area maybe 10-11 blocks long full of little shops and dozens of restaurants and Chinese Markets. Who else can buy a case of diapers, dim sum and fresh fish without moving the car?

 You can't consider moving the car. You park ONCE on Clement Street. It is congested and parking is always a bit tricky. I had to park somewhat close because I had to consider getting the giant box back of diapers back to the car. There was nothing on the block with the store, but I found a spot on the next block. A case of diapers is actually heavy, but it's also very cumbersome to carry.  I am only 5 weeks post shoulder surgery and I don't want to undo any of the progress I've made.
I purchased the case of diapers for $75 and walked back up the street unable to see very well. My shoulder was killing me. I arrived at the car and "thunked" the giant box onto the hood of the van. The hood is angled, so I had to balance it with my body as I fished for my keys in my pocket. I pushed the button on the key and didn't really hear the door unlock, but kept on my mission. The dog was in the car and I could see him out of the corner of my eye.
Or so I thought.

As I reached to open the sliding door behind the drivers seat I realized it wasn't the dog, but a person on the front seat. She was reclined and sleeping very peacefully. I almost had a heart attack and shrieked some expletive. I stumbled back to the curb with my giant box. Though I dropped a large box on the hood, shrieked, swore and tried to open her door, the person never woke up. My heart was pounding. What on earth was this woman doing in my car? Then I realized it was the wrong car. My van was three spots further down the street. I felt like an idiot.

Twenty minutes after arriving home, the doorbell rang and a delivery man delivered the two giant cases of diapers and another case of other supplies Maggie gets every month.. Yes, they arrived three days early and I didn't even need to make the purchase. Nothing will go to waste, it's just a question of storage.

I'll bet that sleeping woman had some strange dreams. I know I did, but at least they made sense to me.

Friday, April 9, 2010

Just a girl

A couple of months ago I posted about the movement to end the “r” word. The movement, started by kids is called Spread the Word to End the Word. That post is Maggie World: Language Cop Redux (

In case you do not know, the “r” word is “retard” or “retarded.” Many people use these words as a synonym for stupid. It makes me cringe. (The other day a sales clerk in Macys used it to describe a display of goods. She sounded idiotic.) Many think trying to police the language one uses is a dumb way to effect change. I disagree. Hearing that word used pejoratively works to reinforce bad stereotypes. Changing terminology alone will not change the world, but it is a start. In the words of Lao-Tzu, “’the longest journey begins with a single step.”

Because this is something I have always felt strongly about, even before I had Maggie in my life, I became a facebook “fan” of this movement and get interesting updates on this issue regularly. Today there was a link to a Community Newsletter piece written by Joe Greene and published the Journal Times in Racine, Wisconsin. This article hit the nail on the head for me. The following is an excerpt from that piece.

Unfortunately, what so many in our society fail to realize is that individuals with disabilities are not people who “suffer from the tragedy of birth defects.” They are not “victims” who must “fight” to “overcome their challenges.” They are not retarded, autistic, blind, deaf or learning disabled. They are people. They are moms and dads, sons and daughters, friends and neighbors, students and teachers, employers and employees. They are people first.

Respectful and inclusive language is essential to the movement for the dignity and humanity of people with intellectual disabilities. Stop and think about it. All members of the human race are entitled to respect and dignity. When you use a word like retarded, even during casual conversation, it strips those with developmental disabilities of their dignity.

Words are powerful. Witness the power of the written word in newspaper print, electronically over the Internet or on television. What we say or write matters.

As society’s language changes, perceptions and attitudes will change — acceptance and respect for people with disabilities will evolve. Using people-first language is a huge step in the right direction to stop hurting others. People-first language is a respectful way of speech and puts the person before the disability. People-first language uses words all people understand.

Avoid words that are misleading or have negative connotations because they contribute to negative stereotypes and devalue the person being described. Some examples of these kinds of words include wheelchair-bound, mongoloid, deaf and dumb, mute, crippled, handicapped and defective.

Replace “handicapped” or “disabled” with “people with disabilities.” Change “He/she is retarded or a slow learner” to “He/she is a person with intellectual disabilities or cognitive disabilities or a learning disability.”

All my stories about Maggie and her friends are simply trying to get across the message Mr. Greene sums up so succinctly. She is just a girl who happens to have some physical disabilities and medical issues. Those issues make her approach to life different and sometimes interesting to those of us who approach things more typically, but they don’t define her or change who she is.

It really is simple. Use terminology that describes one as a person first and mention the disability only if it is relevant to the conversation. It is contagious. The person you are talking to will likely do the same and the negative connotation will start to disappear. It is a long journey, but it is a single step.

Entire article: if  you want to find out more about this go to

Wednesday, April 7, 2010

Playing Hard to Get

Playing "hard to get" is a foreign concept to Miss Maggie!

If you read this regularly you know about Juan, the young man in her class that adores her. Here's a picture I posted before of the two of them protesting. I post this only so you can refresh you memory regarding Juan's looks. He is a cutie, for sure.

Maggie talks about Juan all the time on her computer. She likes him very much. This morning the teacher took a photo of the screen of Maggie's talker and she repeated this sentence over and over. In case you can't read it it says, "Juan is sweet, Juan". That was at 10:30 this morning. 

But this beautiful spring Day is not a day to be tied down.

At 1:00 Pm, just after lunch, the teacher walked in and saw this

You will note that is not Juan in the picture. Maggie has now moved on to Robert and sat there holding his hand. If you can see Robert's face, he seems to be enjoying it quite a bit. 

Fickle, thy name is Maggie. She may not play hard to get, but apparently she's hard to keep.

Goin' Round in Circles all the time

Oh how I love to chase my tail. It is so fulfilling.

A week or so ago I received a bill from one of the medical supply companies. The bill is not enormous – just over $150. It is curious, though, because generally none of this is billed to us. We have private insurance that covers come of Maggie’s supplies and Medi-cal pays for the balance. (Or, more accurately, the balance is written off – but either way I do not get a bill.) This happens occasionally and eventually I call and the provider tells me to disregard it. I put it in my “pile” and forgot about it.

On Monday I received a call from the billing service for this company asking is I had any “questions” about the bill. (That’s a nice cover for Pay up, sister!) I said, well, yes, I do wonder why I received it. The woman checked and said this amount was part of my annual deductible and medi-cal does not pick up deductibles. That is incorrect and I very nicely told her so. Maggie is completely covered soup to nuts. I asked that she re-submit it for payment. She refused saying Medi-cal would only return it as a duplicate billing. Sigh. Ok, I said, I will deal with it from my end.

I decided to tackle this yesterday. I started with a call to my local SF County medi-cal worker. She was not in but a very helpful young woman told me they only handle eligibility and to call a number in Sacramento to get that question answered. I did so. I was on hold for over 15 minutes, but I busied myself sorting papers. When the call was finally answered, the woman asked me for my provider number. Wellll, I don’t know what that is – I am calling about my daughter’s medi-cal. “Oh, sorry dear, this line is for providers only.” Arrgh. She suggested I call to confirm eligibility.

Circular? Why yes it is.

I said, "Wait, let me ask you a general question before I get into another phone queue." I told her my plight and she said, “Something is not right here. First of all, YOU should not be dealing with this. The provider should call this number and resubmit the bill because Maggie has full coverage under x program, y program and z program and even if Medi-cal didn’t pick it up California Children’s services (CCS) would. You may want to call the county worker for CCS.” That was extremely helpful information and gave me the response I needed for the provider.

I called Maggie’s new caseworker at CCS and left a message. Then, armed with my new information I called the provider back. I did not call the national billing number, though, because this seemed to be a unique California issue. There are not too many people using government programs as a secondary insurance. I called the local office and spoke to a woman in billing. English was not her first language. She spoke English just fine but her accent was so strong, it was hard to understand her. That made the call much longer than it would have been. After repeating myself several times and repeating what she said until I understood it, I learned that I would have to speak to her supervisor, who was not available. Eventually I came to understand the reason they would not re-bill it is that this company is not a medi-cal provider.

I’m sorry, what? I have been using them for three years, and they are very attentive. I received a bill only once in those three years when I ordered something that was not covered under either plan. (Silly me, I was being environmentally conscious. I wanted to recharge a battery, which I had to pay for, but a completely new suction machine would be covered….no wonder there’s no money.)

I presumed I misunderstood the woman again. I finally understood that in fact they have simply been writing off the difference the whole time. I do not know why I never received a bill for the deductible before, but in all likelihood, it’s just timing. The deductible is blown through so fast it only applies to the first claim of the year. This year it just happened to be this company. I left a message with her supervisor because she insisted I do so, but that is just a waste of time. I also called the case manager at CCS and told him to disregard my earlier message.

You know what? $150 is worth the service I get from this company, or it was up until yesterday. Nevertheless, wouldn’t it have been easier if the billing woman had told me the truth in the first place instead of telling me that medi-cal refused the claim? She just made that up. That wasted about two hours of my life, increased my blood pressure and added gray hairs. MOREOVER, I still owe the $150.

Now the bill goes in a different pile – and it goes on the bottom.


Monday, April 5, 2010

Dance of Joy

In this house, the first day back to school after a vacation is a great day. Both Maggie and I are happy for opposite reasons. I am happy to have the freedom and Maggie is happy to have some structure to her day. Weare each doing our own version of the Dance of Joy. It’s a win win.

Spring Break was boring for Maggie. It was rainy and cold and many of our outings were cancelled because of rain or because we were waiting for painters or because her chair was broken. There was a lot of hanging out. As fascinating a personality as I am, that gets a tad boring for Maggie.

I really do not understand why they have the vacation the week before the holiday. Despite sitting around for most of the week, Easter Sunday was busy busy busy and Maggie went back to school exhausted. Not every student celebrates Easter, of course and many of those who do celebrate don’t get as wiped out as Maggie does after an outing, but it is curious nonetheless.

We had two affairs yesterday first to my mom’s house for an informal lunch with my sibs and a few cousins. At the last minute, we decided to leave Maggie home so she would have the stamina to make it out to my in laws house later in the day. That proved to be a good plan. The nurse came at 7AM and Steve and I went to church, made food and headed over to my moms.

Maggie’s stamina was the main reason for our decision, but we also have to consider the difficulty of getting Maggie into a place when the boys are not here to help. (Their Spring break was a couple of weeks ago.) Between my shoulder and Steve’s back, it would have been too much to get Maggie up the stairs to my moms. My nephews would happily have helped, but sometimes you just have to say “enough” and give in to the situation.

My in-laws were very pleased to see Maggie and she was on her best behavior. She loves the long car ride over there because it means either Steve or I have to sit in the back with her so we can suction if need be. It was I this time – Maggie helped me with the crossword puzzle.

Overall, it was a lovely Easter. I do miss the boys and the (non)traditional egg hunt we always had when they were little. Steve always did a fantastic job utilizing their toys to display the eggs. We had teenage mutant turtles, G.I.Joes, and all sorts of sport figures holding little chocolate eggs. Because he knew I was nostalgic, he set up a few on the stairs to surprise me. I had to send this picture  to the boys to say Happy Easter. I hope you all had a good Easter weekend, even if it’s not a holiday you celebrate

Saturday, April 3, 2010

All clear

Alls well with Maggie. I don't know what caused that episode this morning, but after keeping the oxygen on for a while Maggie was back to normal. What a difference a couple of hours makes.

This is 8AM this morning, just after the episode (note oxygen tubing hanging from her trach)

Here she is at 11:30 in golden Gate Park.

 It's freezing here so she's bundled up. that's the dog's leash in her hand, but he was inspecting some flora and fauna a few yards away

Right now she's sitting in her chair next to me and she's sound asleep. Lots of activity this morning.

Marshalling onward!

And a pleasant good morning to you too

The nurse left this morning and Maggie was snoozing. I sat just outside her room using the computer. After a while I heard her kicking the side rail of her bed. That's Maggie's sign that she is up and SOMEONE SHOULD BE IN HER PAYING ATTENTION TO ME. Generally it's done in good humor along with throwing pillows out of her bed.

I said "morning Mag, I'll be right there. That usually shuts her up because she knows she's not alone.

The noise didn't stop. I went in and she was struggling to breathe and her face was bluish purple. YIKES!

I don't know what happened but I just cranked the oxygen and did a deep suction. There didn't seem to be any obstruction. Her heart rate was 140 and when I took the oxygen away, her sats dropped to high 80's. (that's not good). I didn't let it get any lower and put the O2 back on her and whatever it was passed. Now she's up in her wheelchair - which is always a better position after something like that - and looking a litte wan. Heart rate is out of the stratosphere and the oxygen if off. Now she's smiling and not in any distress.

My heart rate is escalating by the moment. It always does that. I'm fine while the crises is happening, but crumble afterward.

I just did Maggie's #s again and she's still at only 93 so I put the O2 back on. She doesn't look bad though. Heart rate is down to 120 - which is still a bit high for her, but not terribly. Her ability to "call" for help impresses me. The constant banging was different than usual and made me go in there.

From now on if she's sleeping I will take my computer in there. It is a laptop and I can take my lap with me.

And so the day begins.....