Special Olympics on Friday!!!

If any of you are around Kezar Stadium in San Francisco, tomorrow is Special Olympics!! Come on out and cheer maggie and her teammates onto victory.

I made tie-dye shirts for about 20 Mission folks yesterday. We should be easy to spot. I don't have a shirt, but you can find me by my tie-dyed hands

I will post Special Olympic photos tomorrow. Maggie is in the wheelchair race and some sort of tossing event. She is tentatively set for the power chair race too, but that depends on whether or not the power chair can fit on the bus. There are practical considerations at play always.                                                             

Fancy New Digs

I had an unusual opportunity last night. The members of the Family Advisory Council for UCSF Children’s Hospital were asked to give additional feedback on the planned design of the new Children’s Hospital, which is ALMOST under construction in Mission Bay. We were invited to tour the "mock up" of several types of hospital rooms that will be in the new hospital when it is completed in three or four years. The rooms were fantastic!


Right now UCSF Children’s Hospital is within the larger UCSF Medical Center. Once this new building is finished, it will be a free standing children’s hospital with state of the art facilities to match the state of the art care. The amount of detail in planning and designing these spaces is mind-boggling. Every color choice and material has to be considered as do all the lighting, wall and window coverings and floors. (Speaking of floors, it is funny to see linoleum making a comeback. The choice for the flooring looked very contemporary and right out of 1942 at the same time. Everything comes back into vogue, I guess.)

Members of the council did have some valid suggestions but they were on minor details. Floors squeaked, get the emergency box out of the reach of children, lose this sleep chair, keep that one, etc. I took it upon myself to try out the parents recliners, sleep chairs or sleep spaces in every room. It’s a tough job, but someone has to do it. This one was not the winner.

 

A couple of us with kids in wheelchairs noted access issues for the showers. They are open without steps, but one has to be able to stand to use them. The architects/designers proudly said every shower would have a bench. We pointed out that many disabled kids cannot sit up and even those who are without disabilities but recovering from orthopedic surgeries etc will need a shower chair or something supportive in order to use the showers. There is also a question of where all the equipment will go for many of the kids. Even with those issues, however, the enormous improvement over the current hospital is noteworthy. Mostly we ooh’ed and ahh’d at the fantastic new spaces.

When this hospital is complete, pediatric patients will have their own room and a big bathroom to go with it. The interactive area will be a TV, computer, mp3 and any other state of the art electronics – most of which we probably don’t even know about yet. The planned ICU rooms are about twice the current size and have everything you can imagine. Even the wee babies in the NICU will have their own spaces (for the most part) which is a lot calmer than the “bays” they have now with several babies in them. These will be more family friendly so parents can visit and even room in without feeling like they are in the way of the medical team.

The most impressive of all, though is the labor and delivery rooms. They are huge! Octomom could deliver her babies in here with plenty of room to spare. These rooms get the most visitors and are designed to impress – and they hit the mark.

Maggie will be out of pediatrics before completion of this project. However, I know the next generation of parents will have the best possible facilities available for their sick children which is great and I can personally attest to the comfort of the sleep chairs - or at least some of them..

Cinco de Madre

Happy day after Mother's Day. I hope all the mothers out there were treated like queens. We had a "Cinco de Madre" party here. My mom and two sisters and their families came over along with my father in law and a nephew from the other side Rather than the usual family fare, I had a taco/tostada bar for Mothers Day lunch. It was fun. Five of my nephews were here (ages 15-23) and they consumed vast amounts of food.  Maggie enjoyed all the company.

The boys watched the Giants game while they ate and when that game was over switched to the Oakland A's game. All of us are Giants fans and tolerate but don't really follow the A's. The only exception to this is my nephew Jack, who is 15. He has always been an A's fan and proudly stands out among all the cousins

My favorite image of yesterday had nothing to do with my mother or with being a mother. Rather it is an image of  Jack and came at the end of the A's game. The A's pitcher, Dallas Braden, had a perfect game going. By the end of the game all of us were in the room watching to see if he could pull it off. There weren't enough seats for everyone and several of us were standing. Jack had the leather recliner, the best seat in the room. After the first out in the 9th he was on the edge of his seat. After the second out he was standing up in front of his chair staring at the television. As the pitcher prepared to face the last batter, Jack looked like a proud father. When the perfect game was complete, Jack was grinning ear to ear. The man stands by his team and thoroughly enjoyed his moment in a room full of Giants fans.

The weekend was a nice break after the medical tests on Friday. We have discovered a downside of allowing doctors to put cameras into you body to see what's going on. Sometimes they find problems. We wanted answers to Maggie's repeated symptoms. Be careful what you wish for. We have the answers and we don't like them. Maggie will need surgery to repair a fistula (opening) that has developed between her lungs and esophagus. Not sure yet what exactly is entailed, but it will not be fun for her, or for any of us, that's for sure. This is not a new problem, because we have been fighting these symptoms for months, but now that we know it's there it has to be fixed. More news as it happens. 

No Soup for you

Just a drive by today. In two hours Maggie has to be in the admitting office at UCSF. They are doing two procedures in the OR which of course means anesthesia. Hopefully we will be home by dinner time, but there is a possiblity that she (we) will spend the night. Last year we did the same thing came home and had to go back in emergently the next day. I suggested they just plan to keep her so she will be safe. that was a few weeks ago when she was still showing signs and symptoms of that stubborn infection. Now she's very healthy. I will do whatever they say, but I don't feel strongly one way or the other. (See, sometimes I'm compliant.)

I have to gather up all the necessary gear for both an 8 hour stay and a 24 hour stay. So I'm off.

Maggie is on her computer asking for breakfast over and over and over again. She cannot eat because of the anesthesia. She gets that, but doesn't at the same time.  I just tell her "No Soup for YOU"  and she laughs her head off.

(If that doesn't make sense to you , go watch reruns of Seinfeld.)

Keep a good thought. I'll check back in later

Energy Star Rated

A couple of months ago we purchased a new washing machine. The old one bit the dust after 20+ years of incredible service. The new one is an energy efficient front loading machine that is quiet as a mouse. The clothes are not wringing wet when they come out and the drying time is literally cut in half. That is without and energy saving dryer. I am not one to wax poetic about a household appliance, but this washing machine is WONDERFUL!


I do a lot of laundry, not as much as I did when the boys were home, but far more than average. Maggie accounts for at least 75% of the household laundry. With all the procedures she has done, the feedings and the medications there are many spills. It is simply an unpleasant fact. However, the main source of Maggie’s laundry comes from the trach

You have undoubtedly noticed in 99% of the pictures Maggie is wearing a scarf around her neck. That scarf is not a fashion statement – though she wears it well. It is there to catch the constant flow of secretions from Maggie’s trach. The suction machine goes almost nonstop to get the secretions from the trach, but even with all that effort, Maggie goes through many wardrobe changes. The scarf around her neck is the item changed most often. We own at least 50 of them and it is not at all unusual for Maggie to go through 10 or more in a single day. Often times shirt changes are required along with the scarf changes.

I did a load of Maggie’s wash today. I was amazed at how dry it felt coming out of the washing machine and threw it in the driver feeling so “green” and politically correct. When that was dry I tossed the large load on the futon in the laundry room and started folding about three loads of wash piled there. (There are at least four more to do.) Just as I sat down, I glanced over at the washing machine and I realized I did not start the new load in the “new” washer. I jumped up, pressed the button, and marveled again at its quiet efficiency.

I was folding scarf after scarf. I noticed one did not seem very clean. I stopped mid-fold and looked over at my silent washing machine and back at the pile of clothes I was folding. The load was REALLY dry when I took it out of there to put in the dryer. Could it be? Did I start it? Of course I started it. I did not just dry and start folding a huge load of laundry that was never washed. Did I? No way! It cannot be.

I started folding again, slower now. The more I thought about it the more grossed out I became. I stood up and put the entire load back in the wash pile. I cannot be sure that it was washed. Given the disgusting stuff that is all over those scarves and shirts, I could not take the chance.

I have to turn in my green badge and get a whooping from the planet. Either I washed and dried a load of wash twice or I dried an entire load of dirty clothes. Though it is worse for the planet, I really hope it is the former because it is stupid but not disgusting.

Energy efficient? Hardly.

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On the Edge of her Seat

Maggie is showing her teenage-ness in her own inimitable fashion. I have written before of her ability to unclip the belts holding her shoulder harness and seat belt on. Subsequently she progressed to unhooking the belt that straps her into the bus. It was only a matter of time before she figured out the groin straps. Those are the most important because they really secure her to the wheelchair. But only when they are fastened.

Not any more. Maggie unhooks them with reckless abandon and it's only a matter of time before she falls out of that chair. We are working on remedying the situation, but it is difficult because Maggie has a need/obsession to show us that she has figured it out.  I tried to explain just because you KNOW HOW to do something you don't have to do it all the time. For example, I KNOW HOW to throw you out the window, but I don't DO it. She just smiles and unhooks the buckles.  I guess its not different than another 16 year old acting out; she's living on the edge.

For now I just have to keep the tray on the chair so she can't get to the belts - or at least not easily. . We are also considering lengthening them so she cannot reach of even putting lockable clips on - but we have to balance the need to get her out of the chair quickly.

Generally I'm happy with behavior that is age and emotionally appropriate. This one, not so much. Oh well, other16 year old kids are getting driver's licenses. That's a whole different kind of seat belt issue.

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Today is the launch for the new cookbook Stir Frying to the Sky's Edge by my good friend Grace Young. check out a review  http://www.inmamaskitchen.com/Book_Reviews/international_cooking/Stir_Frying_YOUNG.html

Team Justin

Both Maggie and I meet numerous people during our hospital stays. It is not unusual for us to know two or three other patients when Maggie is admitted. There are a number of “frequent flyers” (regular patients) at UCSF Children’s Hospital, and both parents and kids get to know each other.


On Saturday we went to Crissy Field to support one of those kids. Justin is 14 and has Cystic Fibrosis (CF) which is a crappy disease. He has to spend long stretches in the hospital but he makes the most of it. He is well known for the Wii competitions held in his room. Unless you saw him in the hospital though, you would NEVER know this kid has anything going on. He is an active 14 year old that has a ton of fun.

On Saturday, the “Great Strides” walk to benefit Cystic Fibrosis research was taking place at Crissy Field. This disease should be cured. Researchers are making "great strides” toward a cure and Justin’s family is very active in raising money for research. They recruited many walkers to participate and were having a barbecue afterward. It was a fantastic day, so Maggie and I headed down there. Dad was going to join us a bit later after giving his sister and her friends a whirlwind tour of San Francisco.

There were a gazillion people at Crissy Field. I looked around for “Team Justin,” pushing Maggie through the various awnings and parties set up for other walkers. There was a huge group or fraternity boys and sorority girls in one group. Just as I pushed Maggie through their group, the pizzas arrived and we were completely surrounded by frat boys. Note to self – never get between fraternity boys and free pizza. They quickly parted ways so we could pass, but it was a funny few minutes.

I found Team Justin when I saw a nurse from the UCSF PICU. She recognized Maggie and came to retrieve us. There were burgers, hot dogs grilling, and walkers returning for the feast. I spoke briefly with Tina, Justin’s mom (who serves on the Family Advisory Council with me and other parents). I caught up with Chriss, the nurse manager whose kids went to school with mine.

As I chatted, I started to suction Maggie and found the suction machine would not suck. Really? The machine has one function. I could not get it to work. I called to see if Steve was home and could grab the other, but he was still touring. We had to leave. Maggie was doing ok, but I had maybe 10 minutes to get to a working suction machine, which is just about how long it would take to get home. .

I said my goodbyes. Rob, Justin’s dad said,” Aren’t you going to eat.” I told him I couldn’t. I used to (jokingly) say that everything in my life sucked except my vacuum, so I quickly reformed that saying to fit the situation and took off.

We did get a picture of Justin and Maggie, though. Justin is holding his friends dog “Starbucks”

If you want to participate in the Great Strides Event on your area or get involved in the fight against Cystic Fibrosis, check out http://www.cff.org/great_strides/ 

Unrelated but important note: Today is my 24th wedding anniversary. I am a very lucky woman because I met and married the right person for me. As I waited for Maggie’s bus this morning at 7:00AM, chatting with the night nurse who was leaving and the school nurse who was arriving and trying to get the dog to stop barking I thought “who would have thought this would be my life 24 years later” And then I smiled. Better, worse, richer, poorer, sickness, health. We have had ‘em all. Happy Anniversary, dear.