up up and away

Caring for Maggie requires a concerted effort by a number of different individuals working separately and together.  Everybody has his or her role and when everybody is in sync, amazing things can happen.  I was thinking that and working on an idea for a post when I came across this picture that illustrates it perfectly. 

That's Jonathan Trappe, an adventurer from North Carolina crossing the English Channel in a seat attached to a cluster of helium  balloons.  Every balloon had to do its job for this to work. He also needed patience  to wait for the right weather conditions, safety precautions if something went wrong, and most of all, an adventurous spirit willing to break a few rules.  It's also wise to avoid items with sharp edges 

If a picture is worth 1000 words, you can thank Mr. Trappe for saving you from having to read those words. Well, at least today you didn't have to.  Things are still rattling around in my brain. 

Taking it up a Notch

There are many people who enjoy shopping. I am not one of them. If there is something I need to buy, I will happily go to the appropriate store and buy it, but I am not interested in wandering around in a shopping mall for entertainment. My daughter, on the other hand, would like to do nothing else.

Every weekend I get, "Mom, I want to go to the mall." or "Mall, please." This generally starts around 7:00AM and doesn't let up until we go. For the first few hours I say, "Right, I know, But we have to wait for it to OPEN." That cracks her up. This past Saturday was no exception.

I decided early that I could not bear another aimless trip to Stonestown, the mall closest to us. I told her, "You want to go to a mall, I'll take you to a huge one with lots of stuff to see." We headed downtown to Bloomingdales in the Westfield Mall which is right next door and connected to the San Francisco Centre Mall. It is heaven for a mall rat like Maggie.

The big parking lot is behind these malls and you can enter from Mission Street. I will say the wheelchair entrance is about as circuitous as possible. You have to go up to the 5th floor theater level and walk through the cavernous theater lobby and then go down a separate elevator to the 4th floor get to the mall. It's accessible, but a complete pain.

Once you arrive, though you are treated to a view of the dome from the old Emporium Store. I'm so glad they saved this. It's stunning and brings back such fun memories of Downtown SF of yesteryear. (Perhaps this is the proverbial glass ceiling.)

You really cannot help but smile when you see it, whether you remember the old Emporium or not. It is just so beautiful and the area is completely filled with light.  Maggie didn't react at all, at first, because her chair is designed to keep her head facing forward. She was looking at all the people, oblivious to what was above her. Steve tilted back her chair and she reacted immediately. It was great to see her appreciate the beauty.

 We wandered over to the San Francisco Center with it's fabulous curved escalators. Maggie could not go on those in her chair, of course, but she thought it was pretty funny when I went up and kept waving to her. She waved back with all her might. 

This is taken from the top of the escalator,. I got on right behind them and rode up 

curving around in a half circle which  left me right where this picture is taken. 

We didn't buy anything on our shopping trip. This was just to give Maggie another experience and prevent me from going out of my mind. . I'm not sure it was a good idea, though. This may now be the expectation when she says she want to hit the Mall.

Right on Target

I was shopping in Target the other day loading up on all those household essentials. Somehow I'll bet my household essential are different than those of other households.

As I was passing the women's sports apparel I noted some sports bras in bright colors. These are the ones that you just pull on over your head - no clasp. I bought a couple for Maggie.  While she may not be athletic, these are perfect for her. Trying to fasten a clasp on her back would be impossible.

The next section over was the baby stuff and I bought a case of diaper wipes because 1) we go through hundreds of them and 2) they are a lot cheaper if purchased in  bulk.

As I put my purchases up on the conveyor belt I had to wonder how many other moms are buying bras and diaper wipes at the same time for the same person.

Don't be jealous.

Friend from the past

I had a strange "visitor" from the past yesterday. As I was standing in front of the clinics at UCSF waiting for my car to come up from the parking lot,* I noticed a familiar car sitting at the curb. It looked like our old van. I walked toward it and saw that the license plate was different, but I was pretty sure it was the same car.The distinctive gold color, the Giants sticker on the back, the remains of some other sticker on the passenger side mirror and, of course the bulky wheel chair lift visible through the darkened windows. I snuck this picture while I waited.

I could not tell if the body of the van was modified or not. Mine was not and that's why we had to sell it. Because the floor of the van was not lowered to accommodate Maggie in her chair she became too tall to ride in it. Her head was practically touching the ceiling when we got rid of it three years ago. It worked fine when we originally put the lift in because Maggie was so little, but once she started to grow it became problematic. Still,  that van was part of our life for 12 years. We purchased it the day Tim finished Kindergarten and donated it a month after he graduated from high school.  That's a long time and it holds a lot of memories.

There was a man sitting in the van but he looked harried (as many people do waiting in front of UCSF) and I thought approaching him would just be too weird. But I couldn't just let it go. The valet parking guy talked to the driver and he got out of his car to respond. I figured this was my chance. Just as he was getting back in I said, "Excuse me sir. I think this is my old car." His eyes flashed with anger and he said in a very thick accent, 'NO, this is MY car."   I put my hands up and said "NO NO NO, I understand it is your car now, but I believe this is the car I used to own." Now he was interested. He said he bought it for his daughter who uses a wheelchair.

Makes sense to me.

To confirm, I asked whether or not the floor was lowered. Initially he did not understand the question but then he looked sad and said, "No, and now my daughter is getting too tall and her head is touching the ceiling." I told him that was exactly why we had to get another one. He said, "You have another one? Is it for sale." No, sorry. We use it every single day.  My van arrived just then and I waved goodbye to the nice man and another goodbye to my old car, pleasantly surprised at the memories this stirred up.

It seems totally random that three years later I should see my old car, but I suppose it makes sense. Pretty much anyone who bought that car would have to have a disabled child because an adult would be too big for the configuration of the car. And anyone with a child in a wheelchair in San Francisco will be at UCSF at some point. Whether it was random or a mathematical probability, it was still quite a sweet little moment.

If we were younger and drank lattes instead of ferrying around our disabled daughters, we could have been in this commercial. Just so you know, I would be the thin young woman with the fancy car.

*There have been many medical and scientific breakthroughs, but valet parking at no additional cost is the single greatest achievement at UCSF in the 17 years I have been taking Maggie there.

Flunked

  

The sleep study was an abject failure. How hard is it to flunk a test where all you hav to do is sleep? Well, for Maggie not too hard.

It started out with a bit of drama. I read every direction meticulously and followed them to the letter. I spent an hour getting all her morning meds ready, labeled and with copies of the prescription verifications according to the directions. Of course they couldn't use any of them. We came home and did her meds here this morning. 

.Also, I didn't bring anything for myself. My plan was to wait for her to fall asleep and leave her in the care of the critical care nurses in the ICU and the tech who was to be sitting the the room all night. My house is 10 minutes a way. I could sleep in my own bed for a few hours. The tech was clearly a little freaked out by maggie's extreme needs. and told me it was their "policy" that parents stay for the duration of the test. I told her I read everything cover to cover and it didn't say that anywhere. 

One of my chief complaints is the amount of work that is expected of parents when their child is in the hospital. And the more complicated the child, the more is expected of the parents. Of course I want to be there for my child, don't misunderstand. But I want to be her MOTHER for once in my life. She is scared and I want to comfort and care for her, not be the unpaid medical assistant. 

Momma was not pleased by this unwritten, unspoken "policy".Maggie is being charged for a bed in Intensive care, there is a lovely competent nurse assigned to her, they all know Maggie (she was greeted like a rock star) and Maggie wasn't even sick. The tech went to get her manager. Steve dealt with them as I went upstairs to visit someone I know who was inpatient. This "policy" was being explained to him when the nurses in the ICU overheard what was going on. Seems no one asked them what they thought.  When they got wind of the tech's position they said that's ridiculous. Of course we can handle Maggie. Admittedly, most parents want to stay, they want to provide the comfort for their chlid. i want to do that too, but I don't get to. Most parents don't have to a child that sleeps with a nurse by her side every night. Maggie is comfortable with it, we are comfortable with it, and we deal with this 24 hours a day 7 day of the week. 

Turned out to be moot, because Miss Maggie never fell asleep. And neither did I.She went in with a great attitude and cooperated as much as Maggie can when the probes were put on. But she simply could not take the CPAP. It freaked her out. One side benefit that was bittersweet - with the trach sealed and the air going in, I coul head Maggie's "voice" for the first time in years. That was great - but the sounds she was making were sad and that was not great. She did not like the pressure going into her lungs. She flailed and acted a bit panicked every time it was hooked up. 

For an idea of how the night progressed, here are the before/prep and after pictures.

No cram exam

We are off to UCSF for a sleep study for Maggie. This is the kind of a test I would ACE - I'm a goooood sleeper.

Maggie will be admitted to the ICU at 7:00PM, hooked up to dozens of electrodes and then she's supposed to sleep. There is no pain involved but there are plenty of interesting things to keep her awake. Preventing Maggie from yanking on the electrodes will be interesting. Getting her to settle in for the night with all the noise of the ICU and all those things attached to her head will be a trick, that's for sure. On top of that, they will be trying out CPAP (continuous positive airway pressure) into her trach. They tired this once before prior to the trach and Maggie could not tolerate it. The doctor assumes that was the mask on her face and now that won't be necessary because the pressure will go directly into her trach. Seems likely - Maggie hates things on her face - but Maggie decides what Maggie will tolerate. It's her world, we're all just living in it.

And there BETTER not be a PEA under that mattress, either.

This could be a looong night.

Maggie the Mugger

I just received this picture from Mr. David, one of the paras in Maggie's classroom. Maggie snagged his wallet.

It looks like the pickpocketing class really paid off, but we are going to have to work on the getaway.