What I did on my Christmas vacation

The 12 days of Christmas Vacation - so far. (and it's day 5)

Twelve loads of laundry

Eleven adjustments to the wheelchair

Ten days off school (not counting weekends)

Nine of the same jokes over and over and over again

Eight diapers (a day)

Seven different nurses

Six leaking tubes

Five  TRIPS TO THE MALL

Four days of rain (so far)

Three different family parties

Two episodes of respiratory distress

and an 

emergency trach replacement

I love vacation.  School starts Jan 7.

Then the Pipers will start piping!

911. What's your emergency?

Let me start this by saying Maggie is fine.

But we had a helluva afternoon. I think it is safe to say that the boredom of mom camp was shattered.

Yes that is a picture of the San Francisco Fire Department in my dining room looking at Maggie’s medical background for their paperwork.

Maggie was home with the nurse and I was running errands like a crazy woman, trying to get back in time for her next procedure. I knew I was going to be late, but she is ok for another 30 minutes or so and I just had to get some groceries. I was standing in line to pay when my phone rang and it was Maggie’s nurse, Fely. I answered and without waiting for her to speak said, “I’m almost done and I’ll be home in 20 minutes.” She said, Sally, something is wrong. Maggie is very upset and she is turning blue. WHAT!?!? Is she ok? She is now, but she is crying uncontorllably. Is she blue now? No. The trach was plugged and I cleared it.  I am giving her oxygen. Ok. 

Lest you think I'm inattentive, this does happen with Maggie. It's never good, but once it's over it's over. Still I wanted to get home to see for myself. 

Of course it took FOREVER to get checked out and for the first time in about 1 year I was shopping at a different store, not my neighborhood Safeway. I was at least 15 minutes from home but I had to get out of the store. As I loaded the groceries into the car Fely called again. She sounded more worried. I said, “I’m coming now. DO you need 911?” She said no. She was giving Maggie O2 but she seemed to be in pain.

I drove as safely as I could while fighting panic. Tim was at work in Marin. I called my neighbor who is an RN to see if she could pop in and do an assessment. No answer. I called Steve to see if he was almost home. He was still in his office. He said he would leave right away, but I know I would get home before he did.

When I arrived, Maggie was in distress. Fely was giving o2 and her respiratory numbers were fine – but her heart rate was in the stratosphere.  I made sure the trach was clear. I was perplexed, for sure and said, let’s get her in bed. As I tried to get her out of the chair, I saw it. Her foot was completely wedged in behind the foot box on her wheelchair.  I could not move her and I could not free her foot.

I grabbed the tools and tried to loosen the box but I was fumbling around like an idiot. I finally found the right sized wrench but I couldn’t budge the bolts.  I was freaking out. I needed help and I called 911.

In a way, this is like a normal kid problem, right. Granted, it involved a wheelchair, but she needed to be freed. She could have been up a tree or locked in a closet or something like that, right? This could happen to anyone, right?   As I kept giving information to the 911 dispatcher, I realized maybe it wasn’t so normal. 

“San Francisco 911 what’s your emergency”

My daughter has her foot wedged in behind a piece of her wheelchair and I cannot free it.

Is she injured?

She is definitely in pain, but I can’t tell if it’s injured or broken or just stuck (note – I was not calm)

How old is your daughter? 18.

How did she get her foot in there?

 I don’t know?  She has CP and gets herself into some strange positions, I have never seen her foot back there before.

Oh. I see. What does she say happened? Can she tell you how she did it?

No. She’s non verbal.

Oh. I see. How long has she been stuck?

At least 25 minutes I’m trying to get the foot box off, but I’m not strong enough to move it (shrieking a bit)

Ok ma’am. Take a breath. [When he said that I realized I hadn’t taken a breath in several sentences] The Fire Department and paramedics are en route.

It took about 4 minutes. That is a very quick response, but it is a very long time to wait.  I did have the presence of mind to put the dog outside so he didn’t bother the firemen when they arrived and to call Steve and tell him what was happening. I did not want him to have a heart attack when he saw the Fire trucks and paramedics in front of the house.

First came the firemen – about 5 of them. They surrounded Maggie. I couldn’t even get into Maggie room. I heard a “crack” and knew the chair was broken. I  Did Not Care.  More rescuers arrived.  They just kept coming. There were at least 10 guys in my house. The firemen left when the paramedics took over. We were down to five guys and then three. At some point Steve arrived too. The paramedics  determined her foot was bruised, but likely not broken. They were concerned about Maggie’s breathing and I assured them her weird breathing was her norm. When she started grinning at the firemen and doing her own version of flirting, I knew she was really ok. She pretty much owned every guy in the room.  She was stressed, but fine.

 I was just stressed.

A huge thank you to the very kind firefighters, emt’s and paramedics and everyone else who was here. We 

do not need help very often, but we did today. It is sure nice to know help is there when we need it. 

Grouchy Camper, Grouchy Counselor

Mom Camp is almost over. Summer school starts on Monday. That's a good thing because the camp counselor is getting quite grouchy, and the camper is becoming more difficult to please. When Maggie is out of school I lose the only time I have to myself. Maggie and I have fun together, but everything becomes more difficult and more time consuming. She's bored and I'm frazzled, which is always a very helpful combination.

Yesterday we did our gardening project and everything looks lovely. Maggie was really not that interested at all, though she did enjoy watering our newly planted flowers and herbs this morning. Here are two of the five containers we planted.

We then made a quick trip to the mall, Maggie's favorite place on earth. We were shopping for Grandpa who hit the big 8-0 yesterday. A helpful clerk took us all over the store looking for shorts with elastic in the waist that were not basketball shorts.   He seemed to forget that I was pushing a huge wheelchair as her darted through racks and narrow openings. Finally Maggie and I just stopped and stayed where he could see us so we didn't get stuck somewhere.

By the way, Maggie would like everyone to know that a trip to the men's department does not really count as a trip to the mall. She was quite peeved at me.

The nurse arrived but that doesn't really give me a break because she can't do anything on her own anymore. I had to fetch all the supplies downstairs, lift Maggie and help with all the procedures. I had to time things right so I could be gone for awhile as I wanted to go to dinner with Steve and his dad for his birthday.  Steve was already in the East Bay and was going straight to his dad's so I planned to take BART out there. Before I could do that, though, I to arrange for Tim to be around to help with the next set of procedures so I could go.

When the most relaxing part of your day is a commuter train ride out to the East Bay, it may be time for a break.

The three of us went to dinner and them came back to the house for cake and pie with Steve's cousin Jenny and her boyfriend Scott who live in the house with Grandpa Ed.  The rest of the family will celebrate this weekend at (yet another) graduation, and again in a few weeks at a family reunion; but we didn't want the actual birthday to slip by unnoticed. Ed enjoyed his day, which was the main goal.

Of course two of the three things I bought have to be returned, so Maggie gets another trip to the men's department. She's thrilled about that.

We are both ready for Summer school to start.

Changeable plans ahead!

My plan was to take Maggie on a Bay cruise today, but she's been a tad under the weather and I figured maybe rolling around on the Bay wasn't a great idea for someone with some intestinal problems. Besides, I'm not sure that's something I want to do without an extra pair of hands.

The weather looked fabulous this morning. The sky was blue and Maggie's room in the back (east side) of the house was warm and cozy. I dressed Maggie in her new halter top that we bought yesterday. She looked great. She thought it was hilarious when Dad came in and said, What are you wearing young lady? Where do you think you are, Las Vegas?"

Because of the lovely weather, Plan B was a walk along the promenade above Ocean Beach. There is a walkway that goes for about a mile or more and when it's nice it's a great place to walk. As we loaded into the car I realized it wasn't quite as warm as I thought.  We headed west for a couple of miles until we hit the beach. The wind seemed to pick up with every few blocks we traveled.  I parked, opened the door, lowed the lift and immediately closed it again. It was blowing so hard out there that sand was flying everywhere. Blowing sand is no fun for anyone, but especially not for someone with a trach. It was not exactly wheelchair friendly either; the walkway was covered with the blowing sand.
   

Time for Plan C. Maggie and I turned south and hit Home Depot in Daly City. We bought new shades for her room (she pulls and yanks on them and we have to replace them regularly) and we decided to starts a new project as well. We bought a bunch of plants, flowers, herbs, tomatoes, seeds and even some bulbs. Tomorrow morning we are going to plant them in containers on the deck so Maggie can be part of watering them and watching them grow.  Stay tuned to see if we actually get this project going.

Mom Camp goes Science!

Government in Action

Mom Camp2.0 began last Friday because summer school ended last Thursday. Once again, it is my mission to entertain Ms. Maggie outside of the house every day.  We went shopping on Friday, went to Golden Gate Park on Saturday, walked with Grandma on Sunday and spent yesterday at Mountain lake Park.  I suggested numerous things to Maggie this morning and she was not interested in any. Museum? NO! Zoo? NO! shopping? NO!  Fisherman’s’Wharf? NO! Then I said, DO you want to go to City Hall and find out if Ed Lee is going to run for mayor? Yes!

Maggie is very civic minded.

San Francisco City Hall is a fantastic building. If you are local make it a point to go in there periodically. It is extremely beautiful and full of life, and today was no exception.  There were groups of people milling about, couples getting married and city officials running about. We went in to the Board of Supervisors Transportation committee meeting. It was cool to see the formal meeting taking place in the impressive chamber. It wasn’t exactly exciting, though. We stayed near the door,  I didn’t think Maggie would last very long. That meant we were right in front of the speakers. Every noise was so loud that Maggie kept jumping. I figured we better high tail it out of there before she freaked out.

We walked over to the Mayor’s office. (We did not see Mayor Lee to get the definitive answer on whether he will run in November.)There were lots of people milling about. One group in particular was about 30 strong. They were all large men, I believe from some sort of labor union. They were very polite, in fact several greeted Maggie enthusiastically. That made me smile.  Suddenly as we were standing right there with them, their leader huddled everyone together and said,  “Who are we?”  Those 30 men started exercising their right to free speech right there and then in unison and at the top of their lungs. It was some sort of demonstration and we were right in the middle of it.  Everything was friendly, quiet and orderly and suddenly they were shouting some sort of chant in unison.  Maggie and I both jumped about a mile.

The elevator door opened and I quickly pushed Maggie inside. She was really frightened and trying hard not to cry. A man in the elevator asked what floor and I said “anywhere but here.” I comforted Maggie and told him that the sudden yelling had frightened her. He said, “Hey, it scared me and I was upstairs.” For some reason that made Maggie laugh.

 So the civics lesson today was very thorough. We enjoyed the beauty of the showplace, saw the pageantry and formality of the committee meeting but had to admit it was boring and then were treated to a front row seat at a free speech demonstration. Mom camp can be very educational.

Now Maggie is contemplating a run for mayor. 

Learning the Retail levels

Mom Camp, week one was a study in retail levels, something every girl should learn. We started at the top and moved down. We had  Tuesday at Tiffany's, did Wednesday at Macy's and Thursday at TJ Maxx. I really should have done things in reverse order to give Maggie a sense of accomplishment.  

I'm sure this will shock you, but Tiffany's is not a normal stop for me. I've only been in there a couple of times in my life. Maggie and I popped into Tiffany's out of the rain looking quite bedraggled and unlike the typical Tiffany's customer. I left my necklace - a gift from Steve for our 25th anniversary - to be lengthened and off we went. I can't believe I didn't take Maggie's picture amongst the finery. We cruised around Union Square after that and I thought of going back for a picture, but it started to rain (again) and we were three blocks from the car. We opted for a bee line to the car instead. 

We also manage to squeeze in a a trip to the pulmonologist, which is always exciting and ended the week with a ladies lunch. Maggie went to lunch with me, my sisters and my mom to celebrate Grandmas' birthday. That was fun. We went to the Spinnaker in Sausalito. The dining room, which sits over the bay, is completely made of glass. It's like a reverse aquarium, the people are sitting inside the glass watching the sailboats. Maggie thought that was great, but not as sun as pulling off her oxygen tubing about thirty times during lunch (I think she's feeling better.)

Before we went to lunch, thought we did Maggie's favorite thing. She got her summer haircut. I think she likes it.

Now I have to get cracking on activities for this week. There is always golden Gate Park, just steps from our house, but it has to STOP RAINING first. Otherwise, we'll have to do Saks 5th Ave, Nordstom and Marshalls this week. 

Summer school starts Thursday.