Wait here.

I wonder how much of my day is spent waiting for some body or something. I wait for Maggie to wake up so I can do the last push to get her out the door in the morning. I wait for the verrry slow elevator to take us downstairs, I wait for the school bus, I'm on hold with doctors offices, supply companies, agencies, insurance companies and everything else. We wait for appointments with doctors and therapists, we wait for the night nurse to arrive, and for the meds to be ready at the pharmacy. We wait for deliveries of diapers and food and other supplies. It's time lost. I can't really do anything else but busy work because I know I will be interrupted.

I live in "The waiting place." Dr. Seuss cautioned against it in the wonderful book "Oh the Places You'll Go"

You can get so confused that you’ll start in

to race down long wiggled roads at a break-necking pace

 and grind on for miles across weirdish wild space, 

headed, I fear, toward a most useless place.

The Waiting Place…for people just waiting.

Waiting for a train to go or a bus to come, 

or a plane to go or the mail to come, 

or the rain to go or the phone to ring, 

or the snow to snow 

or waiting around for a Yes or No 

or waiting for their hair to grow. 

Everyone is just waiting.

Waiting for the fish to bite

 or waiting for wind to fly a kite 

or waiting around for Friday night 

or waiting, perhaps, for their Uncle Jake 

or a pot to boil, or a Better Break or a string of pearls, 

or a pair of pants or a wig with curls, 

or Another Chance. 

Everyone is just waiting.

I'm in that "useless place" right now. Waiting. And it's particularly frustrating when I have to wait for something Maggie related suring the school day while she's not even with me.  I had my jacket on all ready I'm ready to go out but couldn't. I'm in a holding pattern.  The oxygen guy called at 10AM and said he would be here between 11-2. Hmm. Should I run out quickly and come back or wait. I can't miss him,. the tank needs to be filled. I asked him "Do you think that's closer to 11 or closer to 2." He said between 11-12. OK. I'll wait here first. I did my banking on line, started another load of wash and folded the three loads that had piled up on top of the dryer. I cleaned the kitchen and started the dishwasher. It's only 11:45.

Tap tap tap.

I could clean out my dresser or my closet, but let's not be ridiculous about this whole thing.

ahh-- doorbell.

Girls Still Rocking

Just checking in, which I haven't done for a few days.  It's been a crazy week. Maggie has been in Girls Rock! camp this week. Of course she can't go without a personal aide or nurse and that, my friends, is ME. Today is the last day - and I am OK with that.

Maggie doesn't really "get" the issues - but she enjoys the socialization. Or at least she does usually. This week she has been very blah all week- sort of out of it. She's fighting off something, but is still falling asleep a lot and needing some extra oxygen. Not really sick, but not great. We are still waiting for whatever this is to reveal itself. For the past six months, this has been the new and prolonged presentation of respiratory problems. There's nothing really to treat (except for the O2) but she's not exactly healthy either. As I type this she is sound asleep in her chair next to me and she just got up 30 minutes ago.  

Yesterday Maggie and I made a Girls Rock mixed CD and have been making copies for all the girls in the camp. Maggie will be quite popular with the other girls when they get these, that's for sure. 

I better go gather all that we need for the final day of camp. They don't want the aide (moi) showing up in her jammies. The idea is to make the idea of becoming a woman attractive and that sight would have the opposite effect.

Have a good weekend.

Pre teen and pre trach

Girls Rock Camp did not go well today. Maggie is coming down with something and making me quite nervous. She cannot seem to stay awake. She is "with it" - not lethargic (which is VERY bad) but she seems completely exhausted and she needed extra oxygen for a little bit today. She perked up later in the afternoon, but she spent her time at camp and most of the rest of the day like this, sound asleep.

You cannot see Barb who is holding her because there are other kids visible and I don't want to put up pics of kids I don't know. Barb was Maggie's physical therapist in middle school. Yesterday we saw Carmen who was her PT at the end of elementary school and today we also saw Alana, who handled Maggie is her early elementary years. Alana recently found these pictures from those days - maybe 8 or 9 years ago and shared them with me. These were from a power mobility camp. Maggie was trying to learn how to use the power chair. She still does it some, but we gave up on the joystick and now she drives with her head. It is very difficult for Maggie, but she loves loves loves doing it. 

There she is, pre-teen and pre-trach, missing teeth and all. I do miss her curly hair. It just disappeared over the years.  I always think she looks so young until I see the pictures from many years ago.

If Maggie doesn't perk up, tomorrow may be "Doctor Rock" camp instead of Girls Rock. 

Breathing Easier

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

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

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

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

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

Energy Crises

I have tremendous respect for pneumonia. The illness manifests in many different ways, but it always kicks your butt.   Maggie is recovering from her latest bout with this bug now and she is doing fine. Until she isn’t. It just sort of sneaks up on her and saps her energy. She will be mid sentence  with  her talker and suddenly fall sound asleep.

 Pneumonia ordinarily means  horrible coughing and a high fever.  In her countless past episodes of pneumonia, I’ve certainly seen both more than once.  She has neither this time around. Her chronic cough is a little worse than usual, but not terrible.  Her usually low temp is more in the normal range, but nothing I would call a fever.  This time it is all issues related to energy and stamina.

Maggie was exhausted for a week before I took her to the doctor on Monday. I assumed she was adjusting back to a full school day after two weeks of Christmas vacation. By last weekend she was needing a little oxygen during the day, which is unusual. That little bit would reenergize her for  several hours.  I sent her to school Monday warning the nurse that something was off.  After a couple of hours the nurse called to tell me that she needed oxygen constantly or her oxygen levels would drop.

That was my tipping point. If she needs that much help it had to be a pneumonia. It was time for the doctor.

Now we are on day 5 of antibiotics and Maggie is much better. I tried to send her to school yesterday but she didn’t last more than a couple of hours.  She’s a wee bit stronger today, though and she went back to school this morning. She has already lasted longer than she did yesterday. Now theres a  three day weekend, so she should be in good fighting shape by Tuesday.

Then we’ll get back to the wind sprints.  

Welcome to the Dark Side

I took the Brisco to the dog park last week. It was very quiet there which was exactly what I needed after a couple of wild days. We played for a bit until he ditched me for some dogs and I wandered over to the benches. There was just one woman sitting there. I at one bench over and enjoyed the few minutes of peace.

We struck up a conversation after her dog came over to me. It was pleasant. I noticed she was using oxygen and had a very small tank  - like the size of a thermos around her neck. I asked how long that lasted and she said 8 hours! Wow! I told her Maggie's tank was 5x the size and only lasted 6.  Though she wasn't there, the conversation turned to Maggie and her medical needs.

It was very cordial and not prying or anything. She was generally interested. I doled out only what information I wanted to and didn't feel put upon to over share. She asked if I had any other children. I said, yes, I have two college age sons.

This is where the conversation took a strange turn. This sweet lady with the oxygen tank said, "It must have been very difficult for them because you probably neglected them."

(insert cartoon head shaking here) I'm sorry, what did you say?

Well you obviously were busy with your daughter and could not give your sons the attention they needed.

I paused for a moment, shocked. How did we get here? It was as though a dark cloud covered the sun.

I paused again. I thought of my boys who had a great childhood, filled with tons of family and friends. I thought of vacations together and their friends who joined us. I thought of walks in the park and dozens of visits to "the rolling place" where they could roll down the grass non-stop. I thought of Eddie on his bike as a little kid and Tim practicing baseball every day. I thought of my  boys who went to private schools, and who brought friends over here constantly. Boys who are kind and polite. Boys who are well liked and respected by their peers and mine. Boys who are both working and having fun.  I thought of the two of them now living together 200 miles from home as they attend college.

 I thought of their very well developed senses of humor and how they might answer her. I felt a smile coming on, but I kept it just to myself.

I paused once more and gave her a long look. Then I simply said, "They did all right."

Swing for the Fence

I have adopted a (frightening) philosophy: set your goals low and feel good that you achieve them. You get to pat yourself on the back for doing what you set out to do. It is ok to do more than your goals, but you always know you will achieve specific goals for the day. However, when you do not accomplish the miniscule goals you set for yourself, you feel stupid. Yesterday was one of those days.


My goals or “must do” list for yesterday had only two things on it. Get Maggie to her 4:30 appointment on time and sign for a package that was about to be shipped back to the sender. (They tried to deliver it when Maggie was in the hospital.) Staying in the house all day made that easy. Or so one would think.

Up to the time we had to leave for her appointment, Maggie and I stayed in all day yesterday trying to get both of us healthier. I should have made this one of my goals, but it was not a “shoe in” so it did not make the list. I am happy to report that Maggie no longer needs supplemental oxygen during the day, hence staying in was a good decision.

The nurse arrived at noon and worked with Maggie while I went into our downstairs room, which houses the laundry and all the junk we do not know what to do with. I started throwing things out and filling boxes for donating. I was down three for three hours and finished the laundry too. Quite the accomplishment, and it was not even on my “must do” list.

Because I have a tremendous head cold, my energy was sapped. At 3:45 PM, I sat in the living room with a late lunch and promptly fell asleep in the chair. I woke up at 4:10 and had to scramble to get Maggie ready to go to her appointment.

I decided to leave a note and my signature for UPS to leave the package or deliver it to a neighbor. As I went to tape it to the front door, I saw the post-it note indicating he had already been there. ARRGH! He must have come while I was downstairs. The nurse was with Maggie on the main floor, but she never heard the door. There is always a suction machine or nebulizer going which makes it difficult to hear anything. It is also possible my doorbell did not work, it is a bit fussy.

That package will now be returned to the sender. I cannot worry about it. I did not order this stuff, one of Maggie’s therapists did. It was supposed to be delivered to the school or directly to him, but they shipped it to us. Now it will be another couple of weeks before we get them, but c’est la vie.

I had to shake off this dashed goal so that I could accomplish my other miniscule goal of getting Maggie to her appointment on time.

We were 10 minutes late.

Today my goals are attaining world peace and cleaning up the oil in the Gulf. I figure if I am going to fail to achieve goals, I might as well swing for the fence.

Deep Breath for Monday!

I have to admit I'm a little relieved to see Monday arrive after such a busy weekend. We have a long boring week at home now. Good for me, not good for Maggie. I have to make sure we get out every day or she will go out of her mind. It's a balance, though. We can't go out too much; Summer school starts next week and she has a ways to go before she could attend school.

Maggie's health is improving everyday. She is still needing supplemental oxygen, but the amount has decreased. She can't quite get over the hump and kick the habit, but we will continue to try. We measure her "sat" or the oxygen saturation in her blood. Normal healthy folk have a sat between 95 and 100%. If we can keep Maggie above 92, she doesn't need supplemental oxygen.

When she was her sickest last week the O2 was going full blast. If it was off for a second the numbers would drop immediately and precipitously. (like down to the 70s) Now I remove it for 20 minutes or so and she hovers in the high 80's. She's getting there. She is building her stamina but it takes a while after such a nasty infection. She just doesn't have the capacity yet.

Steve was in bed for three days last week presumably with the same bug. I was hit Friday afternoon, but on me it's just a bad head cold. I still made it to Coghlan Beach, for a drink with some friends and to two graduation parties, but I took a lot of naps and drank a ton of water. If I hadn't gone out to all of those things I'd probably be over it, but each was important to me. 

Maggie stayed in most of the weekend, but she made the trek on Sunday when we returned to Coghlan Beach to show my sister Mary the new sign. The path is newly accessible so we thought Maggie should get to come. Her grandfather would love this shot. (But looking at it made me realize how pale she still is, even though she's wearing the oxygen.)

Maggie had a great time getting out and it seemed to invigorate her a bit. We will have outings every day this week even as we launch "operation lung capacity." It will be good for both of us.

Maybe I can ditch the afternoon nap.