Access this!

Busy morning around here. Maggie needed blood work done so I had to cancel the bus, take her up to UCSF and then drive her to school. No big deal really, but first we had to retrieve the car from the Office Max parking lot where it had been stuck since yesterday afternoon. Mission accomplished, and it’s just 10AM. I just have to remember to pick Maggie up after school. She cannot take the bus home because she needs to have the nurse with her and the nurse met her at school today. Hence, the nurse cannot ride the bus here because her car is at school. La la la la round and round we go. .

UCSF is an amazing medical complex. The two hospitals are 14 stories each, and there are also medical buildings, medical, nursing and pharmacy schools and all the necessary support those require. It is so big it actually has its own zip code. It is a confusing interconnected set of buildings shoehorned into a space never intended to have so many buildings. There are very old buildings and very new buildings, but, as with any medical center or university setting, space is at a premium.

The care at UCSF is as good as medical care gets in this country or any other. Not everybody is as fortunate as I am to have this level of care so close to home. We have met people from all over the country, and from other countries as well, who travel to UCSF for their care. Maggie and I, on the other hand, are neighbors of this great place and know the best times of day to snag parking.

UCSF is in the process of building a new children’s hospital at another site. It will not be finished until Maggie is out of pediatrics. The UCSF Children’s hospital needs its own identity. It is currently housed within the main hospital. It also needs more space.

This morning we made our way to the lab before 9AM. There was no one in the waiting room. SCORE! But there was also no one in the lab. We put our paper in the tray and sat down. The phlebotomist came in and immediately gave me attitude. Before I could even say good morning, or nod a hello he said, “You’re not first, those people were waiting ahead of you” pointing out into the hallway that spills over from the waiting room of the urgent care department. I respond: “Ok, that’s fine we just put our paper down and we’re waiting. “ His rather terse response was, “Well they get to go first; I will take them before you.” Now I’m a little miffed and said again, [with my own attitude] “ok, I’m just sitting here”.

The other child, also extremely disabled, is sitting in her mom’s lap out in the hall. Mom carries her in and smiles at me somewhat knowingly. I smiled back but I am still perplexed at the whole exchange.

While they are inside, I notice this sign:

Oh.

I do not know how I missed that sign, but I would never expect to see it. Perhaps that is because it is in violation of the law. He does not want wheelchairs taking up space in his waiting room. That is why the other woman was in the hall and that is why she carried her child in.

Pshaw. Homey don’t play that.

When Maggie turn was called, I wheeled her in and of course, there was no access.

He said without looking up, “you have to take her out of the chair and carry her over here.”
I just said, “No. You will have to come over here.” Then he looked up, and I smiled sweetly.*

And he did.

In fairness, the person does not have much room and that is something to take up with the higher ups. However, he cannot make wheelchairs off limits or expect parents of teenagers to carry them into his lab for blood work.

This is a medical center; they need to make it accessible for everyone who needs care. And guess what, someitmes people in wheelchairs need medical care.

I'm smiling sweetly again.*

*I told my sister this story and she said "ooohhhh, I know that smile" [It might not be that sweet]

The Sounds of Silence

Assuming one tells the truth, the most direct way to communicate is by talking. People will understand you fast and best you say what you mean and mean what you say. However, communication takes many forms; talking is just one of them. We use non-verbal communication all the time, whether we realize it or not. A raised eyebrow, a shoulder shrug or even a facial expression can reveal more than words ever could. We “read” posture, expressions, and gestures to understand the people around us. Anyone with a pet relies on non-verbal communication. We also communicate with sounds other than actual words. We giggle, sigh clear our throats, drum our fingers and do dozens of other things just like that. We find ways to communicate because we need to connect with one another.

When Maggie was younger, I knew if I could change only one thing about her disabilities, it would be her inability to talk. The wheelchair was no big deal, the feeding tube, catheters and even the diapers were manageable. I would have her be able to talk to me. If only she could TELL ME what she was thinking, feeling, etc.

For various reasons I do not really feel that way anymore. Things have changed over time. My fears are more profound as are her needs. If I could only fix one thing, I would have her be able to BREATHE. As she got older and a bit bigger, her disabilities overwhelmed her respiratory system and she needed the tracheostomy to survive. Breathing is more important than talking. In addition, though, Maggie does not need to tell me what she is thinking; she communicates it in other ways. And I understand her.

Communication is, by definition, two ways. One party has to receive what the other communicates. Maggie’s receptive communication skills are excellent. She understands words, nuances, moods and every other form of communication. It is not automatic with strangers (for Maggie or for any of us), but for people she knows, she just “gets it.” She easily demonstrates her emotions by facial expressions, gestures etc. She uses her communication device as a tool as well.

The one thing Maggie cannot use is verbalization. She used to, but not anymore. Her “voice” is silent. Her laugh and cry are silent. She used to screech for entertainment, but that too is silent. The placement of the trach means air that would generally go through the vocal cords (and produce sound) is coming out through the tube. If I hear any sound from Maggie, I spring into action because I know one of two things is going on. Either the trach tube needs to be cleared, or worse, the tube has dislodged. It was freaky at first, but not so much anymore. It is just part of who she is. It is ironic, though. I used to wish she could talk and now any sound from her means she needs help.

Maggie has found things to substitute for her voice. If the communication device stops working, Maggie just bangs on the tray of her wheelchair. If she wakes up and someone is not right there staring at her, she kicks the side of the bed until someone comes to her. She communicates her wants and needs.

I miss a few things. Maggie had the BEST laugh. She would laugh so hard she would have to stop for air and it always ended with this gleeful sound as she got the air she needed. I would love to hear that laugh again. She still laughs, but it's silent. Once in a while we'll hear a little peep if she gets into a certain position, but other than that, it's silent.

Maggie was able to say one word before the trach placement. The word was "mama." She used it to get what she wanted, to communicate her pleasure or displeasure, changing tone and pitch of her voice. If I was not home, she said it in a demanding way that was “Where is she?” If I walked in, she said it in a jubilant way, to welcome me back. If she wanted to bug me, she said it over and over and over and over again.

You know what? It never really bugged me. I would give anything to hear that again.

We communicate fine without that one word, but it was always nice to hear.

Ahhh....

Ahhh. I slept for 12 hours. I stayed up all night Sunday doing the night shift for Maggie, but it was a last minute thing, so I didn't sleep in preparation. Yesterday morning I slept for only about 3 hours. It's too hard to sleep in the day; the phone rings, the doorbell rings, etc.

I thought I could catch a bit more in the afternoon, but it wasn't to be. I just hit the hay at 7PM. I woke up at 1:00 thinking I had really screwed myself and was now AWAKE for the day, but after patiently waiitng for about 45 minutes, I drifted back to dreamland. Hopefully this will put my system back to normal. We shall see.

One place I really notice sleep deprivation is driving. There were things that had to be done yesterday so I had to drive. I was sure that folks were drifting into my lane etc. After about the 5th time I thought, hmmmm, maybe it's me. I was slightly paranoid while driving, probably because it actually took concentration and my mind was like pudding.

You've been warned. If you know I haven't slept, stay away from me on the road. I'm easy to spot, I'm the one going 10mph in the slow lane giving everyone else dirty looks.

___________________________

Switching gears.....

Today is January 6. Two years ago today my dad passed away. I just want to take a moment to acknowledge him. He was a wonderful man, husband and father. He was the patriarch of this huge family in name and in action. His passing left a huge hole for all of us, but over the two years, the hole has filled with wonderful memories and stories, so the pain of losing him hurts a little less all the time. His legacy is in the happiness of his 7 children and their spouses, his 20 grandchildren (here are 14/20 of them) and his 3 great grand daughters.

My mom, who misses him most of all, has taken over as head of the family with class. She makes it look easy, but we all know it isn't.

She and I are going to lunch together to honor him. We should probably hit one of his old haunts. There are about 100 of them in the city.

It's 4:53 AM. I'm the night nurse. Arrrrgh. And it's all my fault. Maggie's regular night returns from vacation TODAY, not yesterday. I've been so confused about the days of the week, I just spaced. And of course about 15 minutes before she was supposed to arrive, I realized it was the 4th, not the 5th and I said, "you know Steve, I don't think anyone is coming." Can't blame anyone but me, though. I could have easily filled the shift....Oh well.

Right now Maggie's meds are being delivered via nebulizer while she sleeps. Her three meds take over an hour. I just threaded the cord through the side of the bed and attached it to her trach mask and voila! I don't have to stand there holding the nebulizer for an hour. Two meds are going in now and I will add the third when those finish. The third med is the crazy expensive antibiotic that is so strong I'm supposed to wear a mask while it's being delivered so I don't breathe it in. Or I can sit here, five feet away and outside the door. She just has to stay asleep for my evil plan to work. Quick break to change things. #3 med is going now. Fingers crossed she sleeps.

I did fall asleep for about an hour, and then woke with a start, sure that she was not breathing. She was fine. Maggie really does kick the side of the bed when she wants something, including suctioning. Of course there is a chance that she wouldn't be able to do that, so I don't sleep usually, but I didn't get any sleep in the evening because I didn't realize I would be doing the night shift until it was too late. I don't want to hit the coffee now, though. Steve will come down about 6:AM and let me sleep for a while.

Fortunately Maggie returns to school today so if her gets her on the bus I can sleep for three or four hours. I have to bring the power chair back to school, but I can do that around 11 and get four good hours of sleep first. I should be able to sleep again from about 1 to 3 if I need it, so I can function until an early bed time. Generally today will not be that bad, but I am good for nothing tomorrow. I have learned to sleep as much as possible today so that the "hangover" effect doesn't drag on for too many days. I am old and need my sleep schedule. Pshaw, old has nothing to do with it. I couldn't stay up all night when I was in college either.

You need to see her new bear. It's employed as the tube holder fright now ( I wedge the bear so that the nebulizer can rest in one place and deliver the meds properly. Otherwise I'm just spraying stuff out into the room.) But the bear itlsef was a gift from a friend who came over yesterday. My friend, who is gay, wasn't sure that Maggie had any gay toys, so he gave her a "Pride Pal". This bear is wearing a leather jacket, armband and hat and has pierced ears. But the earrings are handcuffs. It is hilarious. Maggie loves it, especially because she loves the guy who gave it to her. We named it last night. I suggested Gaylord, but Maggie said no. I tried several different names, including Biker Bear, but all were nixed. She finally said "yes" when I suggested Papa Bear. So that's the name.

This is taking me about an hour to type because I have to keep getting up to deal with Maggie. She's still asleep, but she knocked my set-up over so I had to reconfigure things. So I decided to take the picture after all. Well I'm off to administer the other four meds and get her dressed and ready for school and then hit the hay.

Don't call here today. I'll be sawing logs.

update

Thank you everyone. Maggie is fine. The doctors wanted us to come up to UCSF becasause there is a chance of liver and kidney problems. Yikes. They did tests for many different problems. SHe was essentially poisoned by that idiot yesterday, but it appears her system handled the overload. I still have to watch out for a few things, but her personality is back and I am much calmer.
I received comments all day. I just received a new Blackberry storm for Christmas and every time I got an email it *dinged*. We were at Urgent care for three hours and it was ding ding dinging the whole time. It made me smile. Everytime we heard it *ding* I would say to Maggie, "oh oh, Mag, someone else is mad at that stupid nurse." and I would shake my fist in front of her. She was CRACKING up. Of course she kept turning bright red which was a little freaky, but her system was just doing its thing.

The nurses at UCSF were outraged at this error. One of them asked if he was drunk. Gah! No, he wasn't, but it WAS New Year's Eve night/New Year's morning......... And to answer the question that many of you asked - No - he won't be coming back. The mistake itself was really unforgiveable, but the fact that he KNEW he did it and didn't tell me is unbelievable. I spent the day with a very sick child and I didn't know why. Fortunately, treating the symptoms was sufficient in this case, but that was dumb luck.

Besides if he walks back into this house I think my husband and Tim will be ... less than gracious. (Eddie would too, but he already left to go back to Reno.)Thanks to all of you

Spoke too Soon

I should never have discussed Maggie’s good health and her ability to stay out of the hospital for all of 2008. No. She is not in the hospital, but 2009 did not start out well.

The nurse left early on New Year’s Day. I was up at 6AM. Maggie was awake, but just barely. I worked on my computer just outside her room and let her drift back to sleep. I suctioned her every few minutes, but she was really sleeping. For a long time. I started to get a little concerned because it was so unlike her. I wrote that I thought she was adjusting to her teenage status. Nope.

When I started her morning routine at 9AM, she was already a bit listless. Not enough for me to freak out about, but noticeable. Without getting too graphic, there was a serious – and I mean serious -- diaper situation. Two loads of wash serious. Worse than I have ever seen with her. Steve and I tried to clean her up but this was too much. We had to just carry her to the shower chair and hose her off. She remained listless. We had several more incidents like that. We just treated the symptoms with pedialyte and over several hours she perked up more and more.

At 6PM the afternoon nurse went to give her the antibiotic and noticed a problem. The brand new bottle that we opened last night was empty. The night nurse gave her the entire bottle – 60ML instead of 5ML of Cipro. He confirmed it when I talked to him. He realized he made an error but didn’t think anything would happen – and he didn’t tell me before he left. That is 12 times the dosage. Of course her body is going to react. Sheesh.

How could this happen? There are orders in the chart specifically listing the proper dosage. Moreover, commone sense should kick in at some point. No one take 60 mls of an antibiotic. That is two ounces. The largest adult would not take that amount. I know it’s a mistake, but it’s a mistake that could have been disastrous.

She is lucky it was just diarrhea. It could have been much worse. I called her pediatrician, who is a good friend of mine to ask if there was anything else we should be worried about. She wasn’t even the doctor who prescribed the cipro and it’s New Year’s Day – but I can call her anytime, which is an incredible gift. She talked me down and told me things that *might* arise. I am on alert, but was not too worried at that point.

Again, I speak too soon. At 11:00PM last night Her fever spiked to 102.4, which is the highest she has ever had in her life. Also we have to take her temperature under her arm so technically it’s a bit higher than the read out. Considered the emergency room but decided to see how the night went. The fever came down a bit with Tylenol, so I thought it was safe to stay here. We can pretty much do it all here and Maggie is less freaked out. She has a one to one nurse with her here, which is better than I’m going to get in the ER. The nurse was gong to wake me if ANYTHING changed for the worse.

I slept for a few hours with one eye and one ear opened. Not very restful but better than nothing. The fever is gone for now, and her heart rate is down out of the stratosphere. I have to call Pulmonology today to see what to do next. She’s supposed to be on that drug for another week, but I don’t want to give her any more of it until her body recovers from this overdose. I suspect they will tell us we have to head up to UCSF this morning, which is not what I want to do, but it’s better than sitting here wondering.

I cannot let my guard down for a minute. It is exhausting.

New Year

Happy New Year all. 2009 has arrived full of promise and opportunity. Hence, I promise to get back to regular posts on Monday, unless i find the opportunity before then.

I really rely on Maggie's school day to get to things. When she's home on vacation, she wants my full attention. Even when the nurse is here.



She's been sleeping a lot this vacation. I've been up since 6 when the nurse left. Maggie was awake when I got up but fell asleep shortly after he left and been sleeping since then. It's almost 9:00 now. She did this yesterday too. Perhaps she's just changing her sleep patterns to adapt to her teenage status. She's sleeping in. Of course sleeping here is better than passing out at school like she did in this picture.