Won't you be my neighbor?

Every morning after Maggie is fed, changed and dressed, we quietly do all the frantic rushing. We get the talker programmed and packed, fill the portable oxygen tank, hang the fully charged and equipped suction bag on the back of the chair, and put a jacket on both Maggie and me. We put the pole for the talker on the chair and put the wheelchair tray out side the front door.Then we get out the back door, down the elevator, through the basement and out the garage door to wait for the bus.

The bus arrives somewhere between 7:30 and 7:40 On good days we are down there all put together and calm at 7:30. On other days we open the garage door while holding a feeding tube and buckling the last of the 7 straps and hope the bus isn't already out there with the lift down waiting for us. Good days and other days are fairly equal in number. Today was pretty good. And that gave me a few minutes to observe others in front of their houses getting their mornings underway.

Unless our next door neighbors happen to see us getting in to the elevator on the back deck, no one sees any of this. They really have no idea what it takes for us to get out in front by 7:30 AM (ish).  By the time the garage door opens we are together and ready to greet the neighbors walking dogs or driving by. For all they know we are carefree and easy going. But I also have no idea what it takes for them to be outside and ready to go at that hour either. While their circumstances are not like ours, the frantic rush may be in their houses too. Once we're out in front, that is all behind us.

This morning it dawned on me that they put up with a lot having us as neighbors. We are in a row house so there is a lot of togetherness. They can hear the drone of the elevator every time we take Maggie up or down. They can see the lights on in the middle of the night as the nurse works with Maggie. They hear the van that drops off the night nurse and picks her up again in the morning - especially when it honks its arrival. (I ask them not to). They see the delivery vans or the oxygen guy double parked in front of my house every few days.

In short, we are not the most convenient neighbors to have.

But none of them complain. Ever. This morning I watched my neighbor try to pull out of her driveway and navigate around Maggie's school bus just as she does almost every morning. Her kids need to get to school too, and they generally leave when the bus is here. She just waves at me and carefully maneuvers out of her driveway.  I watched my other neighbor wait for cars to go by so she could get around the bus and proceed on to work. She rolled down the window and yelled good morning to Maggie as she did that.   I watch the young guys next door come out and say hello to Maggie asking her questions that she can answer with a yes/no and marveling when she does so. They are a lot closer in age to Maggie then they are to me. All they want is to go get their morning cup of coffee at the nearby cafe but they always stop to say hello.

They all accommodate us in 100 different ways every single day and I never really stop to appreciate that. I bet they think nothing of it, it's just part of being a good neighbor. Even if they don't know the specifics of what goes on in our house, they get that we need a wide berth to get things accomplished. Life would be very unpleasant if they didn't make these accommodations for us, or if we even had to ask them to make them.

Asking is very awkward  because either the people feel bad that they didn't think of it themselves or, rarely, they really don't want to make the accommodation and resent being asked and lash out.  That is unpleasant for everyone. But we have never had to ask our neighbors anything.  They just do it automatically. And that's so nice.

 It's a neighborly day in this beautywood.

Morning has Broken

There is just nothing like awakening to the sound of the nurse calling my name at 5:30. I could tell from the tone in her voice that it wasn't a dire emergency, but she definitely needed my help. That's a good start. It's much harder when I'm afraid.

 Maggie's feeding tube broke. All right, I'm up and moving. I was glad it was her g-tube and not her trach and very glad she did it at 5:30 and not 2:30. This way I'm just up an hour early instead of missing a nights sleep. We have to find gratitude where we can.

As I headed downstairs I figured  I must have done something wrong when I changed it yesterday. I change it every few months and it's no big deal. The tube is held in place by a small balloon that is inflated with water. Perhaps I didn't put in enough water.

How silly of me to think I made a mistake. The tube was defective, the balloon was popped. In the 19 years I have been changing g-tubes, that is the very first time I've had one break so quickly. Generally the balloon pops after a couple of months and we just change it. Sometimes I change it and the balloon is still intact.

 No big deal, I'll just switch it out. Then I remembered. For the first time ever, we changed the tube before we received a spare. I don't have another one. I've never changed the tube without a spare available and it has never broken in less than 24 hours. Of course both happen this time.

Unbelievable.

This is problematic. Maggie cannot go without it because she cannot get her meds or eat without it. #@$^(%(%$#!!! More immediate than that, though, the surgical hole will close without something in there to keep it opened.  I don't want to have to go to the ER for this. It's stupid and wasteful.  Think think think.

For starters, we can keep the site open by putting the old one in. The nurse chastised me that it would not stay because the balloon was broken. I said, that's why God invented tape.  Maggie now looks like a football player taped up for the game.  One problem averted, now what to do.

Ahhh.  School! She has an extra one at school. I am going to take her straight to school and meet the nurse there. We will get to school around 7:30, do a quick change and Maggie will just go on with her day.  I will get on the phone to the supplier post haste get a couple more. If this happens again, I am all out of ideas.

Ok. It's 6:30. I have done hard thinking and problem solving. Now I have to get dressed to get her to school by 7:30.  But first I need coffee.

Christmas Came just the Same

Every year I wait for it to "feel like Christmas" even as I go through the motions of preparing.  I grumble through the shopping and writing of cards wondering why we go through this every year.I go to the parties and enjoy myself but wish they were spread out more during the year, instead of being concentrated into a few weeks.

I complain about the inordinate amount of Christmas decorations we have saying it looks like the Walgreen's Christmas sale aisle. This is just one wall of our living room.  I feel like the walls are closing in on me.

 In short, I am a joy.

And then, every year, when I least expect it, something happens to make me smile and fills me with the Holiday Spirit. This year is happened on December 20. A little later than most years, but still in plenty of time.

Every morning we rush to get Maggie onto the bus. The morning driver, Jerry, is a nice enough guy, but we haven't really connected personally. Before the election he would grumble about things and we carefully avoided any conversation that might get him started. That kept things very superficial. Still he shows up on time every day and takes care of Maggie.  I appreciate his work ethic and know Maggie is safe, and that's really what I need from a bus driver. I always have a little something to give each driver at Christmas to say thank you but I wait until the last day (today) to give it to them.

Yesterday we were outside BEFORE the bus, which is very rare. Generally the garage door opens and Jerry is already sitting out there going through whatever routine he does before he opens the lift door for Maggie's chair. Yesterday we were out there before he arrived. I was proud of myself and felt a little smug. No one was waiting for us and I thought "I ROCK at this crazy morning madness."

Nurse Janice was walking down the street from her car and Jerry arrived within about a minute. Jerry opened the door and handed Maggie a little gift bag. He was giving Maggie a gift!  I was surprised. That doesn't generally happen because.. it just doesn't. And even if the drivers were so inclined, they have so many kids assigned to them that it's not possible. And this was Jerry, not someone with whom we had a particularly close relationship. Inside the bag was a sparkly ornament. Maggie  smiled and reached out to touch it.

I was touched at the kind gesture and thanked him on her behalf.
I stood there as he loaded her onto the bus and felt quite a bit less smug than I had a few minutes earlier.  It dawned on me very slowly that this was the moment. The smallest gesture can do it.  I came back into the house and showed the gift to Steve and said, "Ok, now it feels like Christmas."

Then the Grinch thought of something he hadn't before!

 "Maybe Christmas," he thought  "doesn't come form a store.

Maybe Christmas...perhaps...means a little bit more."

And what happened then...?

Well...in Who-ville they say

That the Grinch's small heart 

Grew three sizes that day! 

I wish you all a small gesture that fills you with the Holiday Spirit

(but some of these decorations are still going to be retired. )

Showers with a chance of Baseball

First real rain of the season started lat night and continued through the night. Rain on the windows and roof is such a wonderful sound to hear when you are snuggled up in bed. But then you have to get up and get Maggie to the bus in the elevator that is open to the elements.

The elevator is slow - it takes about 90 seconds to go from the deck outside Maggie's room down to the backyard. Most days it's a pleasant minute and a half that Maggie and I are cut off from the world. We joke and laugh and have a great time during our ride to the ground level. We really don't notice how slow the lift is going because we have so much fun. When it's pouring down rain, the focus is centered on the very s l o w ride down. 90 seconds in one place during a downpour is a very very long time indeed.

I did grab an umbrella to shield us from the worst of it but it is difficult to hold the umbrella and hold the button to make the elevator go at one time. Also I have to keep shifting the umbrella to avoid getting it caught on the shaft as we descend. And there is no way to cover everything, so Maggie had a dry head and wet knees. We made it down in one piece, but Maggie was less than amused.

It didn't help that I didn't get a chance to feed her. Her nighttime feeds are turned off around 6 and I always give her a feeding in the morning before she goes to school. My plan was to feed her when we got downstairs but the bus was already there waiting for us. The school nurse promised to feed her as soon as they arrived at school, so she would only be about 30 minutes late.

Now the rain has stopped. It is supposed to shower all day today and with our luck those showers will hit just as she comes home and has to come back up the elevator.  But she will survive this indignity with her usual grace and aplomb.

We just need the rain to be gone by game time. The Giants play the Cardinals in Game 7 of the NCLS today and I don't think any of us can tolerate a rain delay.

Maggie will be ready:

(Lest you think I'm neglectful, this picture was not taken this morning. She does not wear shorts when it's raining. This is from a sunny day in September.) 

Go Giants! 

Get off the computer, Mom.

I may have just set the record for how many tasks one can do at a time.

This morning I got up very early and decided to go online. I know better than  to sit at the computer for even one second before I have Maggie all ready to go. It's so easy to flit away a few minutes and then a few more. That wasn't going to happen to me today, though. I had plenty of time. I got up and filled the oxygen tank and I programmed Maggie's dynavox while the computer was starting. Very organized and efficient.

That gave me a false sense of time security.

Suddenly I had about two minutes before the bus and 10 minutes of things to do. I quickly fed Maggie, put her jacket halfway on, put the tray outside and told the school nurse, who was already outside, that I was coming as fast as I could, put Maggie in the chair with just the leg straps and headed out the back door to the elevator.

I had the hairbrush and her trach scarf in my hand and the IPOD shuffle in my mouth. My plan was to brush her hair and tie the scarf during the 90 second ride downstairs. Of course I would have to do both with one hand because the elevator requires one to hold the button in place to keep it moving. No problem, I've done that before.

Just as we started down, Maggie did one of those coughs really needed to be suctioned. The Ipod, hairbrush and scarf moved to the same hand I was using for the elevator button and  I reached for the suction. Good thing I moved the IPOD, because I needed my mouth again. The tip of the suction was inside a glove for cleanliness, but it was stuck on the glove material. I pulled the glove off with my teeth. Not so sure about the cleanliness now, but I only bit the outside of the glove and managed to suction her while we were descending. I also managed to get her hair brushed before we arrived at the ground floor. .

The dog was barking furiously, which means the bus is outside. I opened the garage door, quickly tied her scarf and put the IPOD with the player. Nurse Janice, who had already retrieved the tray from the front porch, put Maggie's other arm in the jacket and together we did the chest and waist straps. The bus driver just grinned at the flurry of activity kindly dismissing my apologies.

As he loaded Maggie onto the bus, the driver said, "Now you have plenty of time." I just looked at him and said, "Now I don't need it. My work is done."

Hurry up and wait

Getting Maggie out the door for the bus for summer school is proving to be a challenge. The morning routine has always been ridiculous but now it's besting me. The bus is scheduled to come at 7:32 but every morning when I get downstairs, he is already waiting. It's uncanny. Every bus in Maggie's 15 year scholastic career has arrived on time or late. Maggie is the last one picked up but still the bus is early. It's like Magic.

I am consistent about getting everything ready the night before. I program the talker, program the coffee pot and charge everything that needs charging. Some things have to wait for the morning. I cannot fill the oxygen tank the night before or it will be empty again in the morning. The last thing I do in the morning is feed Maggie so she can head off to school with a full stomach and be on schedule for the rest of her feedings at school.

This morning I was bound and determined to be ready. I plopped Maggie in her chair, filled the oxygen, unplugged the fully charged and already programmed dynavox and the suction machine and packed them onto the back of the chair. I brushed Maggie's hair and put on a scarf. I put the tray on the front porch for easy retrieval from the front and headed down the elevator. I put Maggie's music and a bottle of water and added the diapers and case of food she needed  The clock said 7:15. I still had to feed her, but I could do that downstairs.

Feeling quite smug that on Day 7 I finally beat the bus I opened the garage door and the bus pulled up that instant. Arrrgh. I still needed to feed her. The school nurse was there and said don't worry about it, he's early. Still. it's a thing with me. I don't like to keep folks waiting. Janice told me that she would feed Maggie when they arrived at school  I learned that because they arrive so early arriving, the driver cannot unload the kids. There are no teachers or anyone else there to meet them.

WHAT?!?!?! I'm busting my butt to get downstairs so that Maggie can sit on the bus for 10 or 15 minutes when she arrives too early at school??!!??

Tomorrow I will be downstairs ready to go at 7:32 and not a moment earlier.

Jeez Mom!!

The nurse that comes on Sunday nights does almost all of the morning routine for me. I love that. I don't have to lift Maggie or fill the oxygen tank, or stuff the dynavox into her bag. She even takes the tray downstairs on her way out. That gives me an extra 10 - 15 minutes in the morning, which is great.

Really all I have to is complete the package. Sometimes that means adjusting a mis-matched outfit, but not today. I changed her scarf, which was already wet and needed changing and brushed her hair and she was set. The last thing I do before we leave is feed Maggie. She is fed slowly overnight, but that stops around 6:30. She's not hungry per se, but she can't make it to the next feeding either.  I give her a bolus of food so she starts out full and on schedule for her day.

This morning I did the finishing touches and said, "All I have to to is feed you Maggie and you can go to school."

Immediately after that I was sidetracked by something. Five minutes later I was in her room drawing a complete blank on what needed to be done. I said, "Maggie I came in her to do something but I can't remember what it is." (All you young people out there, stop laughing. It will happen to you too).

I looked at Maggie and she just raised up the bottom of her shirt to show me her feeding tube. RIGHT! You need to be fed. She was reminding me!!

 I thanked her profusely and she laughed her head off quite proud of herself.

She was laughing WITH me, not AT me. Right?

Great start to a Tuesday

Maggie is out the door and onto the bus and I come back inside to begin my routine of ignoring everything I need to do so I can read the paper, check facebook, etc.

About 10 minutes after they leave I get  phone call from the nurse. Maggie's wheelchair tipped over backwards on the bus as it was chugging up Fulton Street.  Maggie stayed in the chair as it went over. She has seven buckles keeping her in that chair and all were secure. Seems the substitute driver didn't completely secure the tie downs.

Maggie is fine and safe, though a bit frightened.

 I, however, have an incredible stomach ache.

Down and Out

 People are always telling me that they have a terrible cold, the flu, or any number of other ailments and I cluck sympathetically, but I never catch it. I injure myself regularly, but I rarely get ill.  Don't ask me why because it defies common sense. I am overweight, sleep deprived, sedentary, clumsy and yet extremely healthy.  I'm not complaining, mind you, just marveling.

On those rare occasions that I do feel under the weather I try to power through it because there's just too much to do. When I can't  do that I'm really not sure how to behave.  I believe that time should stop and wait for me but it never does.

Sunday night I was hit with a terrible stomach  pain and spent the evening in a ton of discomfort. I was sick. Steve and Maggie were asleep in the chair so I needed to wait to let the nurse in at 11:00PM before I could go to bed (It is impossible for Steve to answer the door when 80lb Maggie is sleeping in his lap). Finally I went to bed and slept fitfully all night.

Steve had to travel yesterday and was gone by 6AM. I got up and did the crazy morning thing and got Maggie off to school. I skipped my obligatory morning cup of coffee, which should have tipped me off that this was going to be a different kind of day. I was fuzzy and not great but not terrible. I  talked to Maggie's doctor and did a few other things. I sat down to work trying to power through this malaise, but  I could not concentrate. At around 9:15 I decided maybe I should lay down for a while.

I took my computer with me, determined to at least do my nursing paperwork that has to be in by Thursday. I set up a ton of pillows on the bed, got my cell phone and the house phone so I wouldn't have to get up. I opened my computer and tried to adjust my glasses to see the screen better. I put the computer down for just a moment. Next thing I knew the phone rang at 10:30 waking me up. Oh, I guess I was tired. I talked to the supply company that sends Maggie's food and feeding supplies arranging for a delivery on Friday. I put down the phone, glanced at my closed computer, took off my glasses and went to sleep.

I woke up at 1:30 in the afternoon! Time did not wait for me at all it just watched me sleep. Maggie's big party is Saturday, I have a gazillion things to do and I slept the day away. I feel a lot better today, but now I'm even further behind than I was.

So it's back to the hamster wheel for me and now I have to run just a little bit faster. Hope I don't fall off.

 

Morning was Broken

The title is a take off of an old Cat Stevens song, Morning Has Broken.  It was a lovely song about a lovely morning in Spring and recognizing the beauty of all of it. Well, it ain't Spring and everything I recognized today warranted a different kind of song. It was a comedy of errors this morning.

Maggie was really frantic about something and I don't know what. She was freaking out in her bed, but nothing seemed to hurt or anything. I proceeded to program her dynavox for the day and fill the oxygen tank while trying to calm her down. Nothing was helping.

She still needed to be fed but she was so upset, there was no way the food would go in. I just kept getting her ready. She ripped her diaper but there was no time to change it, so I just taped it back together. I tried to put her in her chair for but she was arching and really upset. Occasionally I called for Steve to help me. He couldn't hear me and I would just keep trying. Finally after about 10 minutes of wrestling with her I thought I was going to drop her and I REALLY YELLED and he came running. I have never had to call for help to get her in her chair before. It is disconcerting.

Time was passing and I needed to get her downstairs. I decided to feed her downstairs while we waited for the bus, but I glanced at the clock and wondered if we would have time. Just then the doorbell rang and there was Nurse Janice coming up to tell us the bus was already here. Of COURSE they were here already.

Maggie was now safely in her chair and no longer crying, but she looked completely worn out and mad. (This picture is actually from the other day, there was no time for pics today, but you never get to see her mad face.) We got into the elevator for our  S L O W ride down and I realized I hadn't combed her hair or put a scarf over her trach. And she still hadn't eaten. She was only half ready.

It is really foggy and drippy today.When we arrived in the backyard, the door to the basement was swollen shut from all the dampness and we were locked in the yard for a moment. Steve had opened the garage door and Janice could see us trying to get in the back door. She was pushing from her end and it was not moving. I told her to yell for Steve. He came down to the basement and just then I got it opened.

I handed Maggie over to Janice and grabbed a couple of scarves off the top of the dryer. I told Janice what happened and that Maggie did not get her feeding. All the while Ms. Maggie scowled at us. Janice just said "Oh my." in her very sweet way. The bus driver was great, he graciously said he was early, which he might have been, but I think he saw my face and figured I had enough for one morning.

Not sure what all that was about and I half expect a call from school today.

The bus pulled away and I had to leave immediately for my physical therapy appointment.  The therapist asked how I was doing and I told her that my bad shoulder was really getting better, but for some reason it really hurt after this morning.

I cannot imaging what's causing that.

How lovely are your branches....

There are some days that start badly. Today is one of those days.

I came down around 6:30. Greeted Maggie talked to the nurse about the night and started my routine. I went into the kitchen to get coffee. Retrieved my happy Christmas from the dishwasher and was taking that perfect first sip of coffee when I  heard a loud crash.

The Christmas tree, which we spent the last two nights decorating fell over. Of course this year, for the first time in many  many years, Steve took the time to set up the train around the base of the tree and and we put the whole thing on a platform about 12 inches off the floor. That just made for a more spectacular crash

I didn't touch it, the dog wasn't near it. It just timbered crashing ornaments and spilling water all over the newly refinished floors. I couldn't lift it by myself and the nurse was in no position to assist. (In fact she left about two minutes after the crash). I was yelling for Steve who was in the shower. He came down barefoot and had to go back to get shoes on. He righted it, but had to leave for San Jose. We had to leave it to fix tonight. I mopped up the water and folded back the wet rug.

Meanwhile Ms. Maggie was in her room alone and having NONE of that. She was pounding on the side of her bed and demanding some attention. I rushed back there and she was fine - just indignant. I rushed through her morning ritual and got down to the bus.

I like to think things are gong to get better from here. In fact, I think I will go buy a lotto ticket.

What do you DO all day?

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

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

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

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

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

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

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

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

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

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

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

I sure hope there's parking.

Back to School

Today is the first day of school of 2011.

   

I remember trying to get the boys moving on school days. It was not an easy task. The first day back after vacation was nearly impossible. There was cajoling, and pleading coming from me and sloth-like grunts coming from them. I used my cheeriest (and most annoying) voice to wake them while turning on the light and singing a song. If a pillow wasn’t thrown at me, it was pulled over their tousled heads. When they did come downstairs, it was generally with about two minutes to spare.  They would eat a banana or a piece of toast as they left the house. Communication from either of them was rare. My singsong “have a nice day guys” was generally met with a tilt of the head or a single eyebrow raise.  

 Not Maggie; she was chomping at the bit to get going.

After two weeks of partying, and hanging out together every morning, we had to get up, face the morning routine and be outside for the bus at 7:10. Getting up at that hour is not a huge change, it’s not like we slept in during vacation. The nurse leaves at 7AM every morning so I was always up. Maggie was awake almost every morning, but not ready for her day.  Being “up” and being “ready” are two very different things. During vacation I got up at 6:55 and padded downstairs half asleep. In order to actually be ready, I have to be up around 6:15, load up the chair with the equipment and get Maggie downstairs.  When that alarm went off earlier than it has for the past two weeks, I really felt it.

 When I came into Maggie’s room this morning she was already in her chair waiting to go. Lucy had done almost all of the preparation and we actually had a few minutes. Maggie was jumping around in her chair, anxious to start down in the elevator. I had to laugh, even thought I wasn’t surprised. Last night Maggie kept using her talker to say, “Mom. Tomorrow is Monday I go to school.” When I said, “that’s right, are you excited to go back to school?” Maggie would waive her arm as though someone had plugged her in.

Now Maggie is at school. The house is quiet, there is not pop music playing. I can put away the Christmas decorations and get some work done. Or, for the first time in two weeks, do nothing at all.

(raises one eyebrow) That actually sounds good. I think there's a newspaper around here somewhere.

Wild Wild West

Getting Maggie dressed can be a chore. There is a lot of lifting and straining to get her shirt and pants on. Maggie helps some. She can help pull her arms through the shirt, for example. She can also be a hindrance, though. Maggie find is hilarious to try to rip off her diaper as one tries to get her legs through the pant legs. Preventing that is difficult. I find myself in the most unusual physical positions getting her dressed. I use my elbow and forearm to cover the front of the diaper while leaning my body back toward her upper body to prevent her from falling. All of this while I'm feverishly working to get her legs into the pants. Maggie finds this game to be hilarious. I find it exhausting.

Generally on school days the nurse has her all dressed when I come downstairs at 6:30. I don't argue with that. It makes my life easier and Maggie is half asleep while she's getting dressed, so there are fewer games. That means the nurse chooses what Maggie wears to school. That's also fine with me. If she needs to wear something specifi for some reason, I lay things out the night before. There have been a few "misses" but generally Maggie looks great.

 Etoy, the night nurse here on school nights has good taste and a good sense of style. She also bought many of Maggie's clothes, so she knows what she' wants to put on her. Every time Etoy goes home to Houston she comes back laden down with gifts of clothing for Maggie.   This summer she brought Maggie this pink and red shirt with a large horse head on the front. Etoy calls it Maggie's "Texas" shirt.  Maggie loves this shirt, but I have to say it is a very unusual shirt. .

Yesterday Maggie wore that shirt to school. The teachers were asking Maggie about it and she was proudly pointing to the horse on her shirt. They commented that it is not the type of shirt you seen in San Francisco's Mission District. Mr. David, a very cool guy and one of the aides (paraprofessionals) in the classroom said, "well, wait a minute. I am wearing a horse shirt today too". His shirt was underneath a couple of layers, but when he took those off the tow of them were in matching shirts. Ok, his wasn't pink and red, but it was the very same shirt. Maggie was thrilled.

Of course I didn't know anything about this until I received this picture on my phone.

Maggie looks very pleased, doesn't she. 

Apparently this is QUITE this shirt for San Francisco's hip and happening Mission District and mom i hopelessly out of touch again.  Who knew?

Garbage in, Garbage out

Maggie had a young nurse fill in the other night. She is a recent graduate from nursing school, in fact she was in Eddie’s class in grammar school and high school!  She did a great job and did all Maggie’s skilled care with enthusiasm. She had been here a couple of times before training under Fely, but she did this shift on her own. I was home if she needed any help, but she handled things perfectly.

She mentioned how much we recycle and reuse things here, which of course is very different from the hospital. When there is only one patient, you don’t have to worry about spreading germs. Cleaning things well generally takes care of things. It was actually good to hear that she thinks we are efficient with our supplies because I feel like all we do is contribute to the overflowing landfill.  

Maggie generates and incredible amount of garbage. There are at least two large plastic trash bags a day along with a bag or two of recycled food cans  and paper/cardboard from Maggie’s room every day. The rest of the house generates maybe half as much as Maggie does on her own.

The garbage presents something of a problem. The garbage cans are downstairs beneath the deck that comes off of Maggie’s room. Unless one is going to head down the stairs and put the plastic bag directly in the can, I don’t want the garbage outside at night. The raccoons will rip it apart looking for food. That leaves garbage, including diapers, strewn all over the place. Not pleasant.

Generally, I deal with the garbage in the morning. I throw the bag over the deck, put Maggie in the elevator, ride down and then put the bag into the can when I get downstairs. This picture will describe it better than I can. There are the (overflowing) cans along the fence line just at the edge of the deck. You can see the elevator shaft behind the garbage cans.

It’s efficient. Drop the bag, hear the thud, open the elevator door, get in, go down, pick up the bag, toss it in the can and proceed out to the bus.  

I did that this morning before we went shopping. But something wasn’t right. I paused and cocked my head to figure out what was wrong. Then I realized, there was no “thud.” I peered over and saw this.

The garbage was hung up on the cyclone fence. I’m just glad it didn’t land in the neighbor’s yard. That might be difficult to explain at 7AM.

(Looking at his) Watch dog

As soon as I get up in the morning, I begin my ritual of getting Maggie out the door to meet the bus. This morning was no exception. I talked with the nurse about how the night went as I unplugged the charging Dynavox and suction Machine and loaded them onto the chair. I filled the portable oxygen tank and put that on the chair as well.  The chair tipped from the weight because Maggie was not in it yet. I rearranged things to make it safer.

Maggie was already to go. Her jacket was on but she was still in bed. The nurse cannot lift her so I do it. I get everything else ready before I put Maggie in the chair. Not sure why, it is just my routine.

I was more efficient than usual because I had 10 minutes to spare.  Nice. I sat down at the computer. Mistake.  In the blink of an eye, it was late.

Janice, the school nurse was already parked in the driveway. I told the night nurse, who was leaving, to tell Janice we were coming. I quickly grabbed Maggie and fastened all seven buckles to secure her in the wheelchair, tied a scarf around her neck, ran a brush through her hair attached the tray and pole and headed toward the elevator.

It is a very slow ride down. No one can see us because the elevator is in the back of the house (it goes from the back deck to the backyard); but I was not worried, I knew they would not leave without us because Janice knew we were en route.

I knew that. Brisco did not. Our 12-year-old dog does not like any deviation from the routine. This was unacceptable. He was pacing back and forth at the top of the elevator whimpering and then ran down the stairs and stared at us through the glass doors of the elevator until we made it to the bottom. I knew from his actions that the bus must be outside.

Generally I get down to the basement/garage bring Maggie through. Open the garage door, fill up the dogs bowl and bring her outside.  Today I rushed through the garage, hit the button to open the door and pushed her outside to the waiting bus. Brisco stood next to his bowl apoplectic. He was barking up a storm as if to say Wait! Wait! Wait! You forgot a step. I said Brisk – you just have to wait a MINUTE. 

Janice did her check to make sure she had all the necessary equipment and that it was all working properly. Brisco kept barking. Maggie’s hood pulled back a little and I realized I never brushed the back of her head. Oops. Janice will take care of that at school.  Brisco kept barking.  The driver loaded her onto the bus with Brisco barking the entire time.

I am certain my neighbors who don’t work 9-5 were extremely appreciative of the commotion and the barking dog at 7:15. The bus left. I went in an immediately fed the dog. He looked at the food, but he was not really interested in eating. He just needs me to stick to the routine. 

Great. That's what I need. Someone else to answer to.  

Don't mess with the Dog's routine

I got up this morning to start Maggie's morning routine and knew I couldn't do it. I was sick in the middle of the night and didn't sleep at all.  I called for Steve to take her downstairs after I got her ready. I went back to bed when he came down.  As I lay in my bed I could hear Steve and Maggie and the school nurse outside waiting for the bus. Soon they were all laughing hysterically. I was too wiped out to get up and see what was so funny.

Once the bus left Steve came in a brought me a cup of tea, sweet guy that he is, and I asked what was so funny. It seems Brisco (the wonder dog) was quite worried about the change in personnel.  Nurse Janice noticed  he kept looking at the front door apparently wondering where I was. She pointed it out to Steve and Maggie. Brisco came up the front stairs and poked his head in the door as if to say, "uhhh, Sally where are you?" The bus pulled up and they were loading Maggie and he kept watching Maggie and whipping his head around to the front door in disbelief that I wasn't there. 

It's nice to know my dog worries about me. He came in and saw I was in bed and curled up on his pillow at the foot of my bed. Alls'right in his world, now.


Later in the morning Maggie's school called because of some concerns with Maggie's breathing, but she's fine. The nurse put the phone down to Maggie and he used her dynavox to say, "Mom are you ok?" which was very sweet. 
I still don't want to eat anything, but I'm sure the worst of this is over. Thankfully, the seventeen bikeriders opted to camp closer to the race than stay here so I don't have to play house mother. Eddie is still staying here and it will be good to see him.



I'm tottering off to make another cup of tea.

Rude Awakening

I was awake early this morning. Around 5:30 I considered getting up and starting my very busy day, but I was too comfortable. I sort of dozed in my warm bed putting off the inevitable. I am up by 6:15 anyway, so I might as well lay around and enjoy the last half hour or so. It was delicious. 

That moment ended abruptly when I heard the night nurse yelling. Maggie broke her trach tube. The nurses in the house are LVN's not RNs and they are not licensed to deal with the trach except in an emergency. If I'm here I do it. I'm sure if I weren't here they would handle it fine - even if they had to call 911. 

I shot downstairs and put in a new one. She was just laying there quietly because she knows when that happens she has to cooperate - and she does. The new one was inserted and tied in a matter of moments. It is not a painful procedure for Maggie, though I doubt it's very comfortable. I have to put this tube in which closes off her airway for just a second, and then bring it around her neck, thread the tie through the flange and tie it into place. Threading and tying it are the hardest parts.  The hardest thing for Maggie is staying still while I do that. She is compliant as she can be in a body that moves constantly. 

It's been 3.5 years since Maggie got the trach. In that time I have adapted to the emergencies and the incredible amount of care and responsibility required. Sometimes, though, I am just overwhelmed by the whole thing. This morning was one of those times. Seeing her lying there looking at me with trusting eyes and this open hole in her neck was too much. There is never time to deal with those feelings, though. I just did everything necessary and then started the crazy morning routine to get her out the door and onto the bus.. Now she's off and going about her day and I'm here with that image stuck in my mind, reacting almost two hours later. 

If I'm overwhelmed, I can only wonder what she feels.  

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.

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!