Friday, August 29, 2008

Van anyone?

Our 12-year-old van is for sale. In fact, I am posting it to Craig’s List this morning. (If anyone is unfamiliar with Craig’s list, I highly suggest you check it out. You can buy or sell anything and find jobs or employees or apartments etc. It is a car. It is serviceable and useful. I do not care about cars. They are things.
Why then do I feel nostalgic? We should have sold the old van a month ago, but life is busy and complicated. Therefore, we waited. Yesterday I took it to be spiffed up at the carwash. As it emerged from the place, all shiny and clean and the inside vacuumed and polished, I realized I was going to miss it.
We bought the van new when my second son was ending his kindergarten year. He just left for college. That’s a long time, and a lot of life. We have gone on vacations, to parties, to hospitals, to school every day for 12 years.
About seven years ago, we had a lift put in it to accommodate Maggie’s wheelchair. It changed our life. We were suddenly able to take Maggie places without the previous muss and fuss of lifting her into a car seat that did not support her and then folding the wheelchair into the back of the van just to reverse that every time we arrived at a destination. Maggie was only about seven when we had the lift installed. She was so little – probably 35 lbs or so then.

Now Maggie is 14 and, though still little – just over 60lbs, she has grown and now is too tall to fit in the old van while sitting in her wheelchair. We knew it was coming and when she got her new chair this summer, we had no choice. We could not delay any longer. We had to replace the old car. The new van is a 2005 model. It has a lowered chassis so Maggie can grow to be 8 ft tall and she will still fit. (Not bloody likely). Now instead of a lift, I just push a button and the ramp lowers. Slick. This will make things easier still. We purchased it with the assistance of the Golden Gate Regional Center, an organization that contracts with the State of California to provide services and equipment to the developmentally disabled. We couldn’t have done it without their help, so I have to thank them.

I’ve been driving the new van for a couple of months now and it too is serviceable and useful, which is all I ever really want from a car. I’m going to have to keep my guard up so I don’t get attached to this one too. It’s hard to say goodbye to an old friend, even one that rattles and shakes. If I could charge for the sentiment, we could all retire.

Thursday, August 28, 2008

Skleeta Rita

Maggie is improving every day. The pulmonologist called to say she has a differnt "bug" than they first thought. I asked what it was and the doctor slowly enunciated the 15 syllable name of the specific bacteria. We both started laughing at the thought that I would be repeating the word to anyone. She didn't sound convinced when I told her these words were handy for crossword puzzles. She said, wow! you do some SERIOUS crossword puzzles. (Please I don it in the Chronicle only at the beginning of the week when it's easy.)

While I don't have the exact name I can tell you It sounded a LOT like "skleeta rita fuff fuff" which was an ailment that ran rampant in my family as a child. I am unsure of the spelling of skleeta rita fuff fuff but my siblings will remember it well. That was the name my mother gave to any mystery ailment that we were sure required us to miss school. (Apparently my sister Mary had a related illness known at Skreeta Lita Fuff Fuff. It mutated as it worked it's way down the family.)My mother was always of the opinion that this ailment, however pronounced, was not sufficiently terrible to warrant a day off. Bummer.
Turns out, though, through the amazing advances in modern medicine that we really WERE sick after all. Told ya.

Tuesday, August 26, 2008

Are you my mother?

Those of you already tuned in know that Maggie was diagnosed with both pneumonia and tracheitis last Friday. Both of those are serious and could easily land her in the hospital for a week or more. The earlier they’re caught and treated, the less likely she will have to go in the hospital. So, it makes sense to jump on this early, right? Saves resources, time, money and, most importantly, a lot of pain and suffering for Maggie.

Why, then, five days AFTER the diagnosis – which took the patience of a saint to obtain – is Maggie STILL WAITING for the prescription to be authorized? The drug is admittedly very expensive and the pharmacy won’t even order it until it’s authorized. I knew from experience that there would be a delay and tried to light a fire under everyone. That didn't do any good. It was Friday afternoon and you know what that means – wait until Monday.

Late Monday afternoon the pharmacy called to advise they could not get approval because the (inappropriately titled) “urgent care” doctors could not order this drug because they weren’t familiar with Maggie. No problem, I faxed her pediatrician who reordered the med. Nothing happened.

Tuesday – 5:00PM - I received another message, this time from CCS (the authorizing agency) directly, that they could not authorize this with simply a regular pediatrician, rather, the pediatric pulmonologist had to order it. COME ON! I left a message for the pulmonologist but it won’t happen until today at the earliest and THEN the pharmacy can order it. So a full week will go by before she even starts the medication. Because she also has pneumonia, there was also a broad antibiotic ordered, so she’s not in any obvious danger. But it is ridiculous. So much for jumping on things early.

Because Maggie has had pneumonia about 50 times in her life, I recognize the early signs and take action. The signs are not obvious to everyone, but they are to me. The doctors, who appear to be about 16 years old, were politely tolerating my concerns at first, and not very subtly communicating their doubts about my belief that she had pneumonia or tracheitis. It was the soothing voice saying, “there there *mom*, she seems to have resolved these issues” which you know, if you’ve spent any time in medical arenas, means they think you’re an overreacting meddling mother. And they call me mom – they call every pediatric patient’s parents “mom” or “dad.” It’s disconcerting, perhaps because I could easily BE their mother. “*Mom*, the chest xray is perfectly clear, nothing to worry about, and as soon as we get the initial read on the other test you can go.”

When the initial read was positive, the tone changed. “Wow, *mom*, you have good instincts. Oh, and radiology called back and the chest xray isn’t as clear as we thought. She does have pneumonia.” Inwardly I say: “Guess what Junior, I know and I knew six hours ago when I got here. And it’s not instinct, it’s experience. I have been doing this 24 hours a day since you were the smartest one in the 3rd grade. Oh, and by the way, I am NOT your mother. Outwardly, I just nod and say, “ok, what’s the plan.”

The plan was to start this great drug immediately. Wouldn't that have been nice.

Less is More

There are phrases I hate. Many of them. People say kind things all the time, and 99% of the time they are just that – kind. But once in a while someone uses one of these phrases that makes my fillings hurt. Generally the speaker is still being kind and I appreciate the intent, but the words themselves just make me cringe.

Last night I heard one of them during Michelle Obama’s speech. The speech was great, and I hope her husband is elected, but I just sighed at the phrase “the least among us.” Can’t argue with her sentiment, we should be respectful of everyone, including the “least among us.” But who is that? Maggie? Probably. ……… Ouch……..

Yes, Maggie is dependent on others for everything and yes, I realize that is a burden on society and yes, I believe people should respect her and everyone else. And yes yes yes, I get the Biblical reference. I understand and agree with the sentiment. It’s the actual words I take issue with. I just don’t believe for a minute that she is less than anyone, and certainly not that she is the least. Wouldn’t mass murderers be lower on the list? Please tell me child molesters are lower.

“The least among us” really doesn’t square with “All men are created equal,” does it? It suggests that not only are some of us less than others, but by implication, that some of us are better. If there’s a “least” does that meant there’s a “best?” And if so, why doesn’t he or she show themselves so we can fix some of the problems in this world.

Monday, August 25, 2008

Dance of Joy

I like to think of myself as interested in and open to new things. And I am, really. But as the last days of summer fall away, I find myself craving the predictability and schedule of the school year. I can organize myself, and my day when I know Maggie will be in school. In fact I did a very brief version of the Dance of Joy when the school bus door closed. It was brief because I haven't slept in two nights.

We did go on our little adventure up the coast. It was beautiful, but exhausting. Maggie's health issues were there and added a little more to our already busy schedule. She really did ok, but we kept on top of it. Maggie needs something done every second and digging through the multiple bags of supplies to find the needed item was frustrating. At home things are arranged and organized - ok, maybe not organiazed, but we know where things are. We can do things alot more efficiently. Maggie was very excited to sleep with us and could not settle down. Steve handled the first part of the night and I did the second. Neither of us slept much and I was lucky enough to have the oxygen and suction tubing going over my body all night. But waking up to see the Pacific ocean and the cliffs of Mendocino county was not too shabby. This was the view from our room.
Even lying awake is restful when you're looking at that.

Restful yes - but a night's sleep is a nights' sleep. The new nursing arrangement started last night and I was looking forward to the nurse arriving so I could fall into bed. But in a cruel twist of fate: SHE DIDN'T SHOW UP!!! No Call, no nothing. ARRGH! So I was up all night again last night. I did sleep in the lounge chair in her room for about an hour so I am areally ready to rock and roll today. Actually, I think I'll hit the hay right now. Don't call.

Friday, August 22, 2008

Breathing in, Breathing out

Figured I owed an update after that last post. Of course once we got up there Maggie was dong fine. Never fails. then she coughed and things started happening. Maggie did not get admitted. It took six hours to determine that she does have tracheitis, which is not good, but it's something we can treat at home. There is also a small pneumonia. Not as bad as I thought, but bad enough. The doc told us to go on our mini vacation. If Maggie starts to have trouble breathing and the oxygen isn't helping we'll come back. Doesn't that sound fun? Anyone want to join us?

Take a deep breath and have a nice weekend.

Planning what?

We decided to take a short road trip. Just the three of us, Maggie, Steve and I. The boys are off to school so they're not invited. We have not taken Maggie anywhere overnight in at least two years. She's either been too sick or it's been too much trouble to organize. But this weekend is different. Maggie has been healthy - complicated, but healthy. It's time to give it a try.

These plans were made about a month ago, shortly after we learned that our nursing agency was abandoning Maggie as a patient. They gave us 30 days, which ends tomorrow. Hence, tonight is the last nursing shift. Since we weren't going to have nursing anyway and I was going to be up all night every night for the rest of my life, might as well go somewhere. I can miss out on sleep anywhere. Since then we have been working with golden Gate Regional Center to find another way to handle the nursing. Of course it means thousands of dollars and a ton of work for me, but at least I can sleep at night. We have nurses starting under the new system on Sunday. That still leaves 36 hours without nursing, so we planned the trip. We have learned to squeeze alot of entertainment into very short periods of time.

We're leaving at 6am tomorrow, when the night nurse leaves. Or at least we are supposed to. As if on cue, Maggie's having some trouble today and I believe I will be spending the day at UCSF Urgent care. I cold take her to the ER right now, but I know from expericnce that they will send us over to wait for urgent care to open. (Perhaps it should be - NOT THAT URGENT care. ) You may think I'm inattentive typing this while I'm on alert for a dash to the hospital. But I have learned. Thousands of days in the hospital have taught me when to observe and when to rush. Relax. We are in observation mode and I can see her from here. The osygen is on and she's improving, so this may be nothing - but I suspect she's developing pneumonia. Pneumonia is serious and Maggie has had it at least 50 times. At least. Every single time is scary, though.

You know the fear doesn't change. The experience of handling emergency after emergency teaches us how to handle a lot of things, and people often marvel at our ability to deal with these crises. We don't have a choice, so we do what we have to. Experience has also taught me that observation mode can change in a heartbeat. So we are always scared.

My antenna is up and plans for our mini vacation are up in the air. Maybe I'm wrong and we will go after all. Maybe I'm not and she'll be admitted. If that's the case I hope we at least get a room with a view.

Thursday, August 21, 2008

Hot Town Summer in the City

In these last few days of Summer I am trying to fill our days with outings. There is so much to do that the hours just tick by. It's very easy to let the day slip by and wait for the nurse to get here; but if that happens, Maggie doesn't get out at all. That's just not fair. She needs just as much fresh air and stimulation as the next person. So we got all the medical stuff done, and took off. About 20 minutes after I put her in the wheelchair we actually got downstairs. It was one of those times that leaving the house was impossible, I forgot the food and tubes, couldn't find my purse, Maggie's shoes came off, etc etc. Undaunted, we marshaled on.

Getting out of the house is always an adventure with Maggie. We live in San Francisco, a city of tall buildings with lots of stairs. Not exactly the easiest place to live with a wheelchair. Many years ago we had a lift (elevator) installed outside. It's a platform lift that is open to the elements. Not elaborate by any means, but a godsend. We go out Maggie's room, (which used to be the breakfast room) onto a deck and get into the lift. The new wheelchair just fits; but Maggie has to have someone with her. So the attendant, me, another family member or her nurse, has to stand on tip toes wedged in sideways to fit. The lift goes slowly - 9 ft per minute - so getting from the main floor to the garage level takes a couple of minutes. It's not a comfortable ride.

Once downstairs we have to get into the van to go. Happily we have a new van. Well, it's actually used, but new to us. I press a button and the door opens and the ramp comes down. That's slick. The chair locks in and we're ready to go. I have discovered, however, that I have to stand there and hold Maggie's hand while the door is closing because she could get her hand caught in the ramp as it folds up. You can see why it takes so long to get anywhere.
This morning we went with the dog to Crissy Field for a walk. The sweeping views and the walking path are perfect for all of us. The dog has fun, and Maggie ALWAYS has fun. It's easy to push her chair and enjoy the looming Golden Gate Bridge that feels so close you can touch it. On a nice day it looks like this.

But not today. Summer in San Francisco does not mean barbecues and beaches. We have to wait for the end of September for our nice weather. Summer means sweaters and foghorns. It was incredibly foggy today. Beautiful Crissy Field and its sweeping views looked like this:That's pretty much the same view as above. The Golden Gate Bridge is right there, I swear. Ironically along the walking path there was a lovely display of globes decorated in various ways to illustrate how we can stop global warming. I pulled Maggie's hat over her ears, zipped up my fleece jacket and read those with great interest. We were hoping for a little warming, but it was not to be today. It's August 21 and we had to cut our walk short because we were freezing. We loaded back into the car and went to the grocery store. When we needed to recreate our outing to Crissy Field we went to the frozen foods section. Maggie still had fun - she lives for adventure. The dog, not so much.

Wednesday, August 20, 2008

Hey Abner!

Tim left for college this morning.We may not see him until Thanksgiving. It was tough to say good bye for all of us. Maggie gave Tim a kiss goodbye. That's her kiss pictured- she just touches your lips with her hand.

While packing and cleaning out his room Tim filled a plastic bag with all the loose change he found. He took it to a cash machine and collected $324!! It pays to clean your room! He bought himself a new television set for his dorm room with the money, and then promptly forgot to put it in the car. He didn't realize it until they arrived at the school. Oh well it was nice of him to buy us a new set.

So Maggie and I are on our own until Steve comes home tomorrow. I'm sure we can find some trouble to get in. Actually, Maggie already accommodated that this morning by pulling her trach out and sending me flying for the emergency supplies to change it. Because she's more stable now, it's not as scary as it was a year ago. I still have to move fast to make the change, but she's not in distress right away as before.

It serves me right. It was a little smack down for being a nosy neighbor. I was checking out the arrival of an ambulance and fire truck up the street and trying to figure out what was going on. I was not paying attention to Maggie and that is a punishable offense.

I have a lot of responsibility. I have to keep abreast of all the developments on the block and never take my eyes off Maggie.

There's a reason Gladys Kravitz didn't have kids.

Tuesday, August 19, 2008

Normalizing the Abnormal

Normalizing the abnormal. That is exactly what we do and have done every single day for the past 14. years, and it is the underlying theme of this blog. I heard another mom of a disabled kid use that phrase to describe her family’s life and I never forgot it. It describes our life to a “T” (whatever that is). We are living our own definition of “normal” and I know from the stares and whispers that it might not be the “average” experience. But I learned long ago that normal and average are not synonyms. I learned today in a google search that the mom I learned this from didn’t make up that phrase. It has to do with post traumatic stress and any number of other mental/emotional problems. I didn’t mean to be flip using that phrase; in fact knowing its derivation, I find it even more descriptive.

Normal: getting ready for “back to school.” We are doing that. But, we’re not shopping at Office Max or Staples. Instead of buying pens, paper, planners, we are loading up the boxes with diapers, catheters, feeding tubes, suction catheters, nebulizer and all the other things Maggie will need. Of course the first day and every day thereafter day I have to fill the portable oxygen tank, program her dynavox (communication device), change, tube feed and catheterize her and get her dressed, into her wheelchair and ready to meet the bus. All the while we will have to have the suction machine fired up and ready to suction her trach every 30 seconds or so. But, on the bright side, I don’t have to make a sack lunch.

It is likely that unless you have a medical background, or already know Maggie, you don’t have any idea what I said in the last paragraph. Maggie is a clever, smart girl who lives in a body that just doesn’t work very well. She moves, talks, sits, breathes, and eats, which is normal; but she goes about each of those in a different way. Maggie cannot walk or talk so she uses a wheelchair and a communication device. She cannot sit without full support, so there are seven buckles to fasten on her wheelchair. She has serious respiratory problems, so she has a tracheostomy tube. She cannot eat the normal way, so she has a feeding tube. Maggie is, despite all of this, healthy and thriving. But keeping her that way is constant work.
Maggie loves to use her communication device – or “talker” as we call it -- to tell jokes. She is the first one to tell you, by a complicated combination of buttons and switches attached to her wheelchair, that she’s not a stand up comic, but a “sit down” comic. She is very entertaining – and she laughs so hard at her riddles and jokes that she anticipates the answers and often can’t push the button to let the listener know the answer. Keep in mind she’s told and heard these jokes at least 1,000 times. Doesn’t matter, they are funny every single time – especially the way she tells them.

Monday, August 18, 2008

Big Week

Monday Morning. One week until school starts!! Yippee. Maggie loves school and I love the freedom that the school day brings. Before Maggie goes back, however, her brother Tim leaves for college. He's going to the same school as our older son Eddie. It was a big adjustment when the first brother left and this one will be even tougher. With both of them gone Maggie will be stuck only with us. I'm not sure Maggie gets that, even though we've told her many many times.
Both boys really hang out with Maggie when they're home. Tim holds her in the chair on lays on the floor holding her while watching TV. Maggie doesn't really watch TV because of her visual impairment, but she LOVES watching her brothers react to the television. Both of them include her in their chatter or commentary about whatever they're watching and she loves that. They can be watching the most violent gangster movie and Maggie's just cracking up. If they're watching something funny she laughs at them laughing. Often she's laughing so hard we have to make sure she's still breathing. It's not the same with the old parents.

Tim leaves Wednesday. It's hard on Mom and Dad and it will be very hard on Maggie. I don't really think it will be that easy for Tim either. Starting college is scary for anyone. He's lucky that he will have his brother Eddie in the same town, but I doubt he'll need that after the first week or so. Tim is very close to Maggie and she adores him. He is going to miss her more than anyone else.

Above: Tim and Maggie with the birthday cake she helped prepare. Right: the prep

Saturday, August 16, 2008

Hope Springs Eternal

The nursing has been approved, which is great. I'm not really surprised, though, because of the complexity of Maggie's care. Once I gave them a list of her nursing needs, the approvial was very prompt. The challenge was supposed to lie in finding actual nurses to work. As luck will have it, it appears nurses are lining up to work with Maggie. I am so relieved -- but still a little afraid to believe it. As of this minute there are three out of fourteen shifts open. And there are several people interested. Now we just need to figure out how to organize this and get the money to pay the nurses for the first month.

I have heard various things abou thte nursing agency that dropped us. One thing is the agency is reluctant to accept patients in San Francisco because they have to pay so many fees. The mandatory health insurance and other fees are meant to help the little people, but if companies won't do business becasue of the requirements it is the little people who suffer. There are no easy answers to any of this.

Today we went down to the victory garden at San Francisco's Civic Center with Maggie. They used the reflecting pool in front of City Hall, filled it with beds of planted vegetables in beautiful arrangements. There was room to maneuver the wheelchair around the beds and Maggie loved it. Then we hit the SF Main Library. I think I've been in there once before. It is great and Maggie found it highly amusing. The automatic book return was the best. A nice woman let Maggie push her book into the return and it whooshed away. Hilarious, I tell you.

We are hopeful that this new arrangement will work out. But change is a little scary and there are a lot of changes right now.

Thursday, August 14, 2008

Nursing woes

Maggie has nurses in the house 16 hours a day to do all the skilled care Maggie needs. This has been a wonderful service and has enabled us to keep Maggie at home with her family instead of living in some sort of institution. The state pays for the nurses through medi-cal the state insurance plan/fund. It is better for Maggie, better for us and cheaper for the state to do it this way so everyone wins. Now, after many many years of this we have been unceremoniously dropped by her nursing agency. The rate paid by the state is so low, the nursing agency is losing money by providing the care. (There are additional issues about this agency but we'll just stick with the straight business line.)

We are scrambling now because this is something we cannot do on our own. The Regional Center will provide the funding but I will have to find, hire and fire the nurses on my own and keep the paperwork as though I am the agency. In addition we will have to pay the nurses for the first month of nursing out of pocket and then get reimbursed from the Regional Center. that's a LOT of money. Basically I have to take on another 30-40 hours of week of paperwork and administration to get this in place. It seems, however, that we are choiceless. I am hopeful that once we are established, the workload will go down and just spike at certain points each month. It is overwhelming. Hopefully we will get this set up in the next week or so. Keep a good thought.

Wednesday, August 13, 2008

Wednesday 8/13

Greetings. This is my first blog entry ever. I have to thank my friend Kurt for inspiring me to do this. He posted his blog address on his facebook and I knew I had to join in.Likely any readers of this know my daughter Maggie. She's 14 now and has severe disabilties and complex medical problems. The title and focus of this blog is to chronicle our lives dealing with Maggie and the issues involved in raising and living with her. Maggie is smart and funny, but dependent on others for every aspect of her life. Her care requirements are 24/7. Navigating the service agencies is difficult and time consuming. The current budget crises in California seems to be a tipping point, and services are being cut left and right. I'm not sure the budget issue is really a cause or simply provides an excuse to cut back. Personally I believe it's the latter, but I'm old and jaded. I look forward to hearing from anyone and making this blog as interactive as possible.