Thursday, September 27, 2012

Snoozing

Chillaxin with my bro. Ahhhh.

Give your input

My friend Elizabeth received a comment on her wonderful blog,  a moon, worn as it had been a shell. The comment was from a fourth year medical student who reached out to Elizabeth as the parent of a child with disabilities or special health care needs. The doctor wanted to know what parents want/need from their doctor and how s/he can provide that to parents and children s/he will meet in practice. Elizabeth called for responses. I gave one and if you feel the need, you should too. You can either respond at her specific post. (Just tell her you came from me) or respond here and I will forward it.

This was my response


Well, well well, kind Doctor. I applaud your willingness to bravely go where few doctors have gone before. It's a little place we like to call reality. Sorry for the snark, I do applaud you. Really I do. I want doctors who listen and get the fact that when I'm in his/her office with my severely disabled daughter for 25 minutes they do not understand my life or hers. They don't have to find a parking space that can accommodate her wheelchair, find space in a crowded elevator and find an outlet in the waiting room to plug in her suction machine. They don't know that I go home and lift her 80 lbs 20 times a day, change 10 diapers, catheterize and tube feed her and then have to do it all again the next day. They don't know about fighting insurance companies, schools, other services and the time and energy all of it takes. They don't know that I would do 100 times more than this if I were physically able because she is my child and even though it's a ton of work I should not have to justify her existence to anyone. at all. Ever. And especially not doctors. I want doctors to understand that saving a life means saving a LIFE -whatever that life is. I want them to read Elizabeth's blog over and over again until they get it as you seem to have. I want them to stand and cheer for my daughters amazing life, her amazing achievements, her amazing spirit without prompting. I want her to be valued as a human being. I want her to be judged by her character, and not by her disabilities. I want them to know we are all doing the absolute best we can in a very difficult situation and we do it proudly, even if a bit wearily. I want them all to want to reach out as you have. COngratulaitons. You will make an excellent doctor.

Monday, September 24, 2012

Monday

It is 7:54 Monday morning. Maggie is on her bus, probably arriving at school about now. The nurse is gone, Steve and Tim both left for work early, It is quiet here.It's just the dog and me and the dog is snoozing. No television, no radio, no music. The only sound I hear is the clock ticking in the kitchen. And that is OK with me.

It seems like this is the first quiet I've had in weeks. There have been medical emergencies, wheelchair crises (plural), visitors, deliveries, meetings, hospital tests, rearranging nurses, and phones that have not stopped ringing or buzzing or vibrating or something in weeks.  But today it is quiet. And that is OK with me.

The house is a mess. There is laundry in various states of completion, piles to be washed, piles to be folded and piles to put away. There are papers in every corner of the house that need attention, some I marked URGENT in red letters. The table needs to be shortened following a dinner party the other night. There is garbage to be emptied and a bedroom that looks like a disaster area

I will get to all of those. But not right now. Right now I am going to listen to the ticking clock, and maybe pour myself another cup of coffee and sit down and read a book for 30 minutes.  Wild, I know, but I'm going to throw caution to the wind.

Monday gets such a bad rap,

Saturday, September 22, 2012

The Triple Occupancy Club

Today I turn this site over to my husband Steve and his wonderful tribute to his friend Ambassador Chris Stevens

http://www.rememberingchrisstevens.com/post/32058116035/the-triple-occupancy-club

Drawing of the Triple Occupancy Club done By Chris Stevens in 1980  Chris Stevens and Steve McDonald UC Berkeley 1980 and (below) in our living room in 2011
   

Thursday, September 20, 2012

No news is no news

Maggie had her broncoscopy yesterday. That's the test under anesthesia where they scope her trachea and lungs to see what's gong on. They didn't see anything obvious, which is good, of course, but we don't have an explanation for these episodes she is having. In fact, she had another one this morning. They are scary, especially for her. obviously I didn't want anything to be terribly wrong, but I was hoping for some answers. No news is not necessarily good news. it's just no news.

The day itself was comprised of hurry up and wait. Maggie couldn't eat after midnight and the test was scheduled for 1:00PM. We were supposed to be at the hospital at 11 to get admitted etc. I took her to school for a couple of hours in the morning. I figured having something to do would take her mind off of being hungry.

My plan was to pick her up at 10:30. Steve called from his office and forgot his cell phone at home. That would make it tough to give updates. I told him I would leave early and bring it to him, but I didn't have time to park etc, so he had to come outside and get it. Of course I had to wait for him and didn't leave downtown until 10:25. I had to get to Maggie's school, get her loaded and get and to the hospital in 35 minutes. It wasn't looking good. It was looking even worse when I ran into street closures because of the salesforce.com convention. (The irony of this was not lost on me. Salesforce.com is owned by Marc Benioff and UCSF is now called UCSF Benioff Childrens' hospital after his amazing $100 million donation.)

Despite these setbacks, we arrived in the admitting office at 11:05 and then sat for over an HOUR waiting to get admitted. From there we went to the surgical waiting room - which is a very stressful place. People are either waiting to go into surgery or waiting for information on family members who are already in surgery. Maggie and I picked a quiet corner and zoned out.

Miraculously, they called us on time and up we went. the procedure started about 1:20 and lasted 30 minutes. She was in the recovery room by 2 and they called me to come up shortly after that. Maggie did fine. She woke up and smiled when she heard her music, but she could not keep her oxygen levels up. They were not comfortable releasing us until either they O2 stayed where it should be or the anesthesiologist released us. That's fine, but it took four hours.

Maggie was perfectly fine in every way except her oxygenation.  She is okay today, but it took overnight to get right.Maggie just needed a little boost from the oxygen and she did fine. When took off the oxygen the numbers would drift down again into the low 80's and we'd have to put it back on. It was really a reaction to the anesthesia and having them mess with her lungs.

I suggested we put her in her chair to keep her upright and they agreed. I set up Maggie's talker and she regaled the recovery room staff - and the families of the other kids - with jokes. The nurses were cracking up. One nurse got a pad and paper to write down her favorite joke, which is really funny with the flat computerized voice of the dynavox.

 Why couldn't he pony talk?
It was a little horse.

Particularly funny after a broncoscopy.






Monday, September 17, 2012

Juror #5, what say you

This is a warning to anyone who may be accused of a crime in San Francisco. If you are scheduled for trial during the week of October 15, 2012 you have an additional problem. Call your lawyer. See if you can get a continuance to any other week. Because Ms. Law and Order  is coming to the jury box.

Maggie has been summoned to jury duty for that week.



I'm almost tempted to send her. I wonder if there's a space for her nurse and electrical outlets for her suction machine. 

Weekend Update



There is nothing like a quiet relaxing weekend after a unbelievably difficult week and that's what we got: nothing like a quiet relaxing weekend.  Four out of five nursing shifts cancelled and I scrambled all weekend to find someone to cover those. In addition, Maggie decided to reestablish herself as the appropriate center of attention in this house and freaked all of us out with an awesome display of medical need.

It started Friday night when the nurse called at 7PM to cancel his overnight shift. That is never a good start. I went through my list and started texting or calling various nurses and lo and behold, I found someone to cover the shift. I was feeling quite proud of myself, but the feeling didn't last.

The evening nurse was still there. At 10PM Maggie had an "episode" in which she was really struggling to breathe. This happened a couple of weeks ago too. We got her upright and changed the trach tube again and she calmed down and everything was OK. The night nurse arrived and took over and I went to bed. The phone rang at 3:30 and I knew immediately that I had to come downstairs. (I have instructed the night nurses to call the house phone if they need me because it rings right next to our bed. This saves them from having to leave Maggie's bedside to come and yell for me.) It doesn't happen very often lately, so I flew down the stairs.

Maggie was desperately trying to get air and looked very bad. Once again we sat her upright and I could feel her start to calm down but she needed a lot of oxygen. I feared pneumonia and after a bit I decided enough was enough and we had to go to the ER. After our close call a couple of weeks ago - for essentially the same sort of episode - I had all the papers ready to go. We put Maggie in her chair and I quickly got dressed and grabbed the cell phone, kindle fire and chargers (NEVER forget the chargers) and took off.

The hospital is about 5 minutes away. Maggie needed O2 but was no longer in distress. IN fact on the way over, she was slamming her hand down because the radio was on and NOT her music. I told her she had to wait, but her demands actually calmed me down quite a bit. If she wanted her music, she couldn't be in too much trouble. We arrived at the ER around 4:45.

By 7:30 they had completed and read a chest xray and other tests, all of which were negative. That's good. No pneumonia, no UTI, no obvious problem with the blood tests. Yes she needed increased oxygen and yes she had two of these episodes, but I was comfortable that we could handle things at home. The Emergency Docs were not, though and wanted to admit her. I started pushing back because she just didn't need to stay. We had to wait for the pediatricians to come down from the hospital floor to evaluate her. That took hours.

I'm not sure what the disconnect was there and I suspect we were sort of lost in the change of shift in the ER.  Eventually, like 11:00AM they changed us from a treatment room to a regular room still in the ER and I told that nurse what we were waiting for. He went to check and I suspect that was the first time anyone actually TOLD the peds team that we were waiting. They showed up around 1:00 and agreed Maggie could go home but it still took over an hour to get out of there.  She was discharged around 2:30 PM, 11 hours after I flew down the stairs and nearly 10 hours after we arrived in the ER.

As we were leaving the hospital I received a text from the nurse scheduled for both the Saturday and Sunday night shifts. She was cancelling both shifts because her mother was also in the ER. I scrambled and found nurses to cover both shifts. Saturday night there was another episode with Maggie. I came down at 2:30AM this time and we put her in her chair where she was fine. She slept there the rest of the night. Whatever is going on is obviously exacerbated when she is lying flat. I promised the pediatrician at the hospital that I would call the pulmonologist first thing Monday morning, and I have already done that.  

I was beyond exhausted yesterday. The nurse was supposed to work form 1-9 and I planned a long afternoon nap, but unbelievably she too called and cancelled because her mom was also in the ER. What a weekend for the ER! The moms of both nurses were admitted to the hospital. I tried to get a replacement but was striking out, until I called Fely, who agreed to come in and work at 3. I tried to nap but my body clock is so off kilter at this point that I was laying there exhausted and wide awake.

Last night, Maggie did OK. And I slept hard for seven hours straight. As far as I know all the regular nurses will be here. It will take me a few days to catch up now, but hopefully the drama will stop for a while.

And now it's Monday. Maggie's in school and you would never knew all of that went down.

Addendum: Maggie will have a bronchoscopy on Wednesday. That's a procedure done under anesthesia in the OR but it is pain free. They just go have a look/see by inserting a scope. That will tell us if there is some inflammation or something else obvious going on. She will be home by dinner time on Wednesday.



Friday, September 14, 2012

Maggie weighs in

Despite the world circumstances that have hit us so personally and so hard, we have to marshall on. we have to get things done and Maggie still needs our full attention. We can't lose ourselves in this because Maggie still needs to be lifted, suctioned, fed, etc etc. It's good, though. She keeps us grounded.

Maggie cannot understand what happened, though she fully understands that we are upset and that dad is on TV. She even refrained from her standard statement, "I don't like TV" when her dad is on the screen.

Last night just as the nurse left, Maggie was sitting in the living room with me. Steve was behind her in the dining room on the computer. She said, on her talker Dad? Dad? Dad? He absentmindedly answered "Yes Maggie I'm right here."  Satisfied, she hit her "news from school" button and this is what she said.

Listen closely.



If you could not hear it, I took a picture of the screen too and you can read it for yourself

She waited to get his attention and then gave him her message. I was only half listening but found myself sitting at attention before she was done. Often Maggie's talker is just going on the the background and we don't catch things the first time around. I leaned forward to see if Steve had heard it. He heard it loud and clear. He was just sitting at the table smiling sort of sadly. He was very touched and told her so. She was very proud of herself and said it again and again. 

Obviously, Maggie did not enter that message. One of the adults int he class did it, but Maggie knew that she had a special message for her dad and delivered it perfectly. 

Yeah, she keeps us grounded and makes our hearts soar.

Thursday, September 13, 2012

A surreal day

Thank you to everyone for the kind calls, comments, emails and everything else yesterday. It was a surreal day, as you can imagine.

To have someone you know die suddenly is always difficult. When that person's death has national and international significance it is mind boggling. A friend who lost her brother in law on 9/11 likened our experience to hers and I said, respectfully, that that situation was even more horrific than this. She said simply, "Horrifc is horrific. there is no more or less." She's right.

I am happy that every single report on Ambassador Stevens mentioned what a personable guy he was and how delighted he was to be in Libya. Both the United States and Libya lost a great man. And I do believe that Libyans are genuinely sad as well. Chris Stevens was very well liked by the people there and this fringe element, or sect, of band of outlaws or whatever they are, did not act and do not speak for the Libyans that Chris loved.

But his family is suffering the worst loss.  We were Chris' friends, not family. He had many many friends and I know all of them feel as we do, shocked, sad and lost. I cannot begin to imagine what his family is going through. My heart breaks for them.

To add to the surreal nature of the day, I was fielding calls from reporters looking for Steve and watching Steve on various television stations, listening to him on the radio and reading about him on the internet. He expressed reluctance to be interviewed at first, it was difficult thing for him to to, but he thought it was important to honor his friend, and I thought he did a spectacular job. That too was bizarre, though. Steve was taken to the Moscone Center to be interviewed by NBC. They were already there covering the release of the new IPhone 5. He had to wait for his interview to begin and felt like he had been dropped in another planet as he waited to tell the national news about his friend Chris Stevens but had to listen to people prattering on about the newest gadget.

I promise to return to our regularly scheduled programming because even as I was dealing with all of this yesterday, I was dealing with issues in Maggie's world and using every ounce of my wavering composure to keep from blowing my stack. I survived, because it was all just so so stupid, especially in light of the days events.

I do want to share this picture, because it gave me hope in the midst of a very hopeless day.

Peace on earth. Goodwill to men

Wednesday, September 12, 2012

Chris Stevens

A day off from Maggie's world today to address issues in the real world.

Our good friend Chris Stevens was the Ambassador to Libya and we are devastated at the news of his death in yesterdays attack on the Consulate in Benghazi.

Chris and Steve go back 35 years to their days at Cal Berkeley. He was a bright light, an extraordinary man doing extraordinary work. He had been in various countries in the Middle East throughout his long diplomatic career, but came "home" frequently to see his family. We were lucky that he always included a dinner at our house on these trips home. Here are he and Steve in my living room after one of those dinners.

It is hard to believe those won't happen again.

We last saw him at a reception his parents hosted in May before he left to fill his post as the newly appointed ambassador. He was humble, as always, and spoke of Libya in the most positive terms. He loved his work and did it very well. As I hugged him goodbye after that reception I said, "Take care of yourself, Chris and please be safe."

Hard to be safe in such a dangerous situation.

Rest in Peace Chris. It was an honor to know you.

Addendum: My husband has been interviewed by several News outlets as they attempt to portray the kind of man we lost today. I am extremely proud of my husband's abiltiy to honor his friend in such an articulate way despite his overwhelming grief.  The first of these interviews aired on San Francisco CBS5 this afternoon which you can see here: http://sanfrancisco.cbslocal.com/video/7716769-bay-area-remembers-u-s-ambassador-killed-in-libya/  Another interview will air on NBC's today show in the morning. Other friends are being interviewed around the country as well and I'm certain the chorus will be the same. A wonderful man, a tremendous national and personal loss.

Saturday, September 8, 2012

Communication and Art


I never posted about the panel presentation that Maggie and I saw at Girls Rock camp. It was amazing and I said it deserved its own post but I never gave it one. The panel was made up of women who are all graduates of the CCS (California Children’s Services) program. That means each one of them has a significant physical condition that qualified them for this program of therapy and equipment and more.

The panel was comprised of six women.* One of the six was our friend Fiona. I worked with her dad when she was born and he helped me tremendously when Maggie was born a few years later. Fiona is the bomb. She uses a wheelchair and needs assistance with many things. She is also brilliant and graduates from Stanford in a couple of months.  I am sure her education will not end there.

Fiona was not the only shining star on that panel, though.  Of the six, at least four were college graduates. And I am talking serious colleges, In addition to Stanford, one graduated from Cal Berkeley, one from San Francisco State and one from St. Mary’s. One was still in college. I cannot say about the last one. She arrived late after they talked about their education. Four of the six were in wheelchairs and two of those used communication devices. They talked about their accomplishments and how they make their disabilities work in the world. One of the six was engaged to be married and she brought her fiancĂ© with her.  

It was amazing.

They were addressing their younger peers, acting as mentors to Maggie and the other girls her age. I do not know how much the kids appreciated how amazing this was, but I certainly did. (I was the only parent in the room.)    I can tell you this: Maggie was absolutely enthralled with the women who were delivering their message via communication devices. She may not have comprehended everything they were saying (her issue, not theirs) but she definitely got that they were important people with something to say and they were using their devices to say it. 

Maggie was the only one in camp who used a communication device. With the exception of her school day, Maggie is always the only one who uses a communication device, so experiencing this was tremendous for her. And for me. 

One of those women using a device to speak was Thanh. I recognized her because she used to come to Maggie's school where she acted as a mentor. That needs to happen again.  I mentioned that Maggie went to Mission and she said (on her talker) Yes, I know her. Maggie was thrilled.

Yesterday I saw this video on a friend’s facebook page. Thanh was featured as an artist from this organization called Creativity Explored. You can see for yourself why I was so blown away by her and why Maggie was so impressed.

And I did not even know she was an artist. (She’s the third one featured)

 

* There are just as many boys/men in CCS, but this particular program was specifically targeted to the girls. And the campers were all girls too.  

Friday, September 7, 2012

Caught Unprepared

We had a scare last Sunday morning and I thought we were going to have to make a run to the ER. The nurse woke me at 4:30AM because Maggie was struggling to breathe. I flew down the stairs and started pulling out all my tricks to calm her down so she could breathe normally. I put her in her chair because sitting her upright is better than being flat. We also changed the trach while the nurse suctioned and cranked up the oxygen. It didn't seem to be helping, but Maggie was so panicked it was hard to tell.

I figured we better go and I started grabbing things I would need. As I raced around the house grabbing things I realized how unprepared we were. It used to be that everything was in a bag ready  to go, but Maggie has been so stable lately that bag has been put away. I could see that Maggie was calming down, but I wasn't positive she was ok and kept gathering things.

As it turned out, she did recover fine and we did not go to the hospital, but I learned a lesson from that and have been getting an emergency kit back together for easy access. Now that I am Maggie's conservator, I have to include those papers in my emergency kit so that  I can make decisions for her. I decided to put the papers I needed regarding the conservatorship, her medical history including allergies and medications and  a copy of the insurance cards in an envelope in the nurse's chart. They are marked as for emergency use and I can grab them in a flash.

I will put her emergency bag back in the hall closet with a change of clothes, some food, feeding tubes, diapers, catheters, books, a change of clothes etc ready to go. Then I will just have to grab my phone and charger and her music we can hit the road.


I figure if I'm ready we won't need it.



I would make a suggestion to anyone out there caring for a person with special health care needs. Do a history on the computer and include the medications and allergies and update it whenever there are changes. It's so easy to get the doctors up to speed when you arrive and they are very appreciative of the organized delivery of information. I also put it on a flash drive that I keep in my purse so they can copy and paste if Maggie gets admittted. I know the information is correct and complete and avoid scary mistakes.  I even bring a copy with me to the various medical appointments because it is just too hard to remember all the drugs and dosages. If anyone wants my template I'm happy to provide it. I just made it up, but it has everything you need!


 

Tuesday, September 4, 2012

Extreme Parenting

My friend Elizabeth, from a moon worn as if it had been a shell prepared this lovely video by, of and for parents of children with disabilities.

I kept promising to send her a picture of me holding up words of guidance for parents who are new to this world, but I never quite got to it. I'm sorry I procrastinated (again) because I would be honored to be part of this. But I don't know what I could add to this, I think it says it all

Enjoy the video and share it wide and far.



Sunday, September 2, 2012

The people who brought you weekends

Happy Labor Day.

 I am not in a labor union and never have been. I do not have strong opinions for or against labor unions and do not wish to debate their place in current American politics, pension reform or anything else. But no one can deny the difference these unions made historically.

 I may be partial to the historical significance because one of my ancestors was a big player in Labor in San Francisco from 1900 until 1937.

My great grandfather, Michael Casey,pictured above, was working long hours 7 days a week with his fellow laborers. They had enough.  In 1900,  the workers skipped work and went on a picnic and founded Local 85 of the Teamsters. My brother was writing a paper in college and went to the Labor archives where they excited to learn that he was related to Michael Casey and gave him this picture of our Great Grandfather at that infamous picnic. He's the guy in the center pouring the beer.



From that start, Local 85 grew in power and helped countless workers. Michael Casey's power grew too. As a young leader he ordered the strike of 1901. The newspaper called him  "Bloody" Mike Casey, and the term stuck.  He continued his labor work and his power grew until he was the head of the Teamsters for all of the Western United States (west of Chicago). As a much older and more powerful man, 'Bloody" Mike Casey was actually the conservative voice in the 1934 General Strike. From the admittedly bias accounts I've read, he was an instrumental figure in resolving the general strike of 1934 before the populace turned against labor.  

In addition to his work in Labor, Michael Casey raised seven children, had about 20 grandchildren and 50 great grandchildren. Here he is as the patriarch with a few of his family members. My mother is the ringlet covered child in the front with her sisters Mayrose and Virginia on either side of her and her brothers Mike and Jack one row back. 


There are as many stories about Michael Casey as there are descendants. All of them are very entertaining. My Uncle Jack, peeking out from behind his uncle Charlie in the above picture and now now 90 years old himself,  has entertained us with stories of Capone's men coming to San Francisco and being turned back by my great grandfather and his cohorts before they could get a foothold in San Francisco. Who knows how true any of the stories are, but they are fun to listen to that's for sure.
.'
So I give a Labor day tip of my hat to Bloody Mike and those like him who helped so many lead a better life by standing up for the workers of this country. 

Enjoy your day off. You earned it. Or someone earned it for you.



Teamsters Local 85 was led by two powerful men who would loom large over San Francisco organized labor for more than three decades: Michael "Bloody Mike" Casey (1857-1937) and John P. McLaughlin (1873-1949). Born in Ireland, Casey--a charter member of Local 85 and its first business agent--served as the union's president for more than thirty years. In 1904 he was elected one of the International Brotherhood of Teamsters' (IBT) seven regional vice presidents and the chief IBT representative and organizer for the entire United States west of Chicago http://www.oac.cdlib.org/findaid/ark:/13030/tf0d5n97pp/admin/#did-1.7.1