E.R. Revisited

I had to visit the emergency room at Scripps Hospital in Encinitas again today. My trach was obstructed again. Early this morning while being trach suctioned, I couldn't breathe and my nurse, Ernie had to grab the ambu bag and got me breathing again. I decided to go to the E.R. later this morning after trying to get some sleep. At the E.R. I found out that Dr. Eisman, the pulmonologist who always treats me, was not there; they thought he had left the country for vacation. I have a lot of confidence in Dr. Eisman, and to have another pulmonologist treat me made me a little apprehensive. No one knows my situation as well as he does. He has been treating me for 13 years. I would be treated by Dr. Clark, his associate.

Again I had the usual chest x-ray. But, this time they had to do the dreaded blood work. I am very difficult to draw blood from. I usually end up like a human pin cushion from all the poking. Luckily, I was only poked twice. The RT(respiratory therapist), Janet, who has worked with me many times over the last 13 years, came in the exam room to set up the bronchoscope. Unlike the two stooges who had trouble setting up the bronchoscope during my E.R. visit Saturday night, Janet is very much on top of things. I have a lot of confidence in her. Dr. Clark soon came in. To my relief, he had contacted Dr. Eisman, who gave him advice on how to handle my situation. He put the bronchoscope down my trach and saw the flap of scar tissue in the trachea that keeps blocking my trach tube. He advanced the trach farther past the obstruction. After he was done I was allowed to go home. But, I will need to undergo a procedure soon to have the scar tissue removed.

E.R.

Saturday morning started off badly. I was having frequent trach suctioning and the suction catheter would not go down all the way. Also, there was a persistent wheezing coming from the trach. It felt like there was an obstruction. My mom squirted saline water numerous times down my trach to loosen things up. But, it had no effect. I felt something was wrong. After a restless morning, my lungs were somewhat clear. I thought the worst was over. When my nurse, Ernie showed up for work at 2:00pm things seemed much better. I had less suctioning, but the catheter kept meeting resistance, but Ernie was able to force it through. I thought it might be a dried mucus plug at the end of the trach tube. But, at around 6:00 as I was talking to my sister on the phone, I felt an urgent need for suctioning and had to end the phone call. Ernie went down the trach with the suction catheter, but the way was blocked. As he went down again, I couldn't breathe. Frantically, I mouthed to him that I couldn't breathe. He quickly grabbed my ambu bag, and in a few seconds he had it attached to my trach and pumped air to my lungs and I could breathe again. My heart was pounding so hard it felt like it would come out of my chest. It is always a scary experience, especially when you have the fear that the ambu bag may not get you breathing again. Thank God for the ambu bag! After that episode, I knew it was no dried mucus plug; I suspected scar tissue. I have been down this road before. In January I stopped breathing a few times, until the pulmonologist at Scripps Memorial Hospital in Encinitas, Dr. Eisman, finally removed the scar tissue. For the next seven months, my trach was unobstructed. I felt that the problem was gone for good. I was surprised when it came back again. I had to go to the dreaded E.R. Ernie drove me in my van to Scripps Hospital in Encinitas. On the way, I listened to U2, to take my mind off things.

When we arrived at the hospital, the E.R. waiting room was almost empty; a good sign that they were not very busy. After a somewhat short wait, they called my name and I was allowed in the E.R. First I had to meet with the triage nurse. She was told what the problem was, and then took blood pressure, and temperature. I was promptly ushered into a procedure room to wait, and wait for the doctor. While waiting, the nurse hooked me to the heart monitor, automatic blood pressure monitor, and pulse oximeter to measure my oxygen levels. My heart rate was 120. The nurse told me to relax and not to talk. When she was gone I continued to talk. It wasn't the talking making my heart rate go up, it was because I was stressed out from what happened to me earlier! They also took a chest x-ray. After a while the E.R. doctor came in the room to evaluate me. At the time I was breathing well, and by the doctors tone it sounded like he would send me home. During the evaluation I needed suctioning. Again the catheter met resistance and I couldn't breathe. My nurse, Ernie grabbed the ambu bag and got me breathing again. This convinced them there was a problem. The E.R. doctor contacted the pulmonologist, Dr. Eisman. I was relieved that he was on duty. He knows what to do. That put my mind at ease.

Soon two R.T.s(respiratory therapists) entered the room with the broncoscopy machine. The two stooges couldn't figure out how to connect the equipment. My nurse, Ernie helped them connect it. He was an RT in the Navy so he knew how to do it. It's unbelievable they didn't know how to do it. The doctor came in and put the bronchscope down my trach. He found a flap of scar tissue at the end of the trach tube that was causing the obstruction. He advanced the trach tube past the scar tissue and the airway was completly clear. I was soon allowed to return home.

Miramar Air Show

Today I went to the annual airshow at MCAS(Marine Corps Air Station) Miramar in San Diego. I have always had a love for aircraft ever since grade school, so I was excited to go. It was an awesome experience. The first demonstration I saw was a Marine Air-Ground Task Force Assault Demo. It was a demonstration of close air support, armor,artillery and infantry. It was complete with helicopters, jets, tanks,marines and a lot of fiery explosions. The explosions were so intense I could feel the heat. Next was the F/A-18 Hornet showing it's capabilities. After that was a step back to the past. They had a legacy flight with some WWII era fighter planes, and flying alongside was an F/A-18 Hornet fighter jet. I thought the juxtaposition of old and new was quite an interesting sight to see. Following that was a civilian acrobatic flyer in a bright red bi-plane, the "Oracle Challenger" piloted by Sean Tucker, a veteran of the airshow circuit. His loops and death defying spins were amazing to watch. After that was the Patriots Jet Team. As they soared overhead they trailed streamers of red, white, and blue smoke. I missed the next act, Shockley's "ShockWave" Jet Truck, because I was looking at the various aircraft assembled on the tarmac. I'm just not that interested in trucks. After that was a civilian acrobatic flying team, the Red Baron Squadron 4-Ship Stearman Aircraft. They did some amazing synchronized maneuvers. Next, they had a demonstration of one of my favorite jets, the AV-8B Harrier Jet. I find it interesting because it is a VTOL(vertical take off and landing). The sight of a jet hovering in the air is amazing. The final act was the United States Air Force Thunderbirds, the stars of the show. Usually they have the Navy Blue Angels, but this year is the 60th anniversary of the founding of the U.S. Airforce, so they had the Thunderbirds.

The Thunderbirds are just as awesome. There was much anticipation as the Thunderbirds prepared to take to the sky. I could feel the excitement in the air as the jets roared down the runway and soared majestically into the sky. The roar of jets makes the hairs rise on the back of my neck with excitement. I felt like a kid. I am always amazed at how the pilots can be so precise in their maneuvers. The six red, white, and blue Thunderbirds perform formation flying and solo routines, most of which are pretty hair-raising. In one routine, two jets fly full speed towards each other and then bank away from each other as they seem about to collide. In another, a jet flew upside down. In the mirror formation one jet flies upside down directly above the other jet creating a mirror image. The "bomb burst" maneuver is a sight to see. The jets fly straight up in the air then veer off in different directions. They end the show with all six jets flying in the delta formation. A beautiful sight to see.

I left the airshow feeling elated and looking forward to next year's show.

Bookshare.org

Reading has been a lifelong passion of mine; my books have always been among my most prized possessions. So, when last year I lost the ability to turn the pages of books I felt a great sense of loss. I couldn't imagine not being able to read books anymore. I looked into electric page turners, but they turned out to very expensive and not so user friendly. But, then I thought of electronic books. I always preferred reading real books, so I wasn't too interested in electronic books. But, I realized I had to shed this bias and embrace the future if I was to enjoy reading again. I decided that e-books were the answer. While doing an internet search for e-books, I came across Bookshare.org. They make print books available on-line to individuals with visual impairments or people who are unable to hold or turn pages of a book due to a physical disability. This was the site for me. I signed up right away. To qualify, all I had to do was fax them a proof of disability signed by my doctor, stating that because of my disability I was unable to turn pages to read books. Once I was approved for membership, I payed a one time fee of $25 and a yearly fee of $50. I am allowed to download 100 books a month out of a growing collection of books which are scanned by members and volunteers and sometimes the owner of the copyright. It is legal because of an exemption in U.S. copyright law that allows the reproduction of publications into formats for the disabled. The books are available in two formats, DAISY and BRF. DAISY is a text format that can also read the text if needed; BRF is a Braille format. I downloaded a free reader called Victor Reader to read the books. It does a pretty good job, but I wish it was a little easier to use. But, it is better than nothing. I recommend Bookshare.org. It has allowed me to enjoy reading again.

More Pictures of Lucky

Here are some more pictures of Lucky. The bottom picture is Lucky with my mom's cat, Sassy. They are two partners in crime.

San Diego Zoo

Yesterday I went to the San Diego Zoo with my nurse, Ernie. It is another one of my favorite places to visit in San Diego. This is a great time of year to visit since the tourist season has ebbed. It is hard to maneuver a wheelchair through the throngs of people. We started by going through the Monkey Trails exhibit. The exhibit shows the flora and fauna of the tropical forests of Africa and Asia. The highlight is the monkeys, of coarse. They are among my favorite animals. I enjoy watching them climb, swing, and frolic. We also wandered through the numerous aviaries to see the variety of colorful, exotic birds. Hearing the cacaphony of bird songs, and sounds is so peaceful and soothing. Another exhibit I always enjoy visiting is the orangutan enclosure. They are so amusing to see. Their antics always draw a crowd. It's as if they want an audience. I never get tired of watching them. They make me laugh. But they are also so smart. One was using a twig to get food out of a replica ant hill. That's how the do it in the wild. It is sad to know that their habitat is being destroyed at an alarming rate. We may not see a future with orangutans living in the wild if this keeps up. We also saw the bonobos, sometimes called "pygmy chimpanzees." They are also fun to watch. One saw me and came right up to the plexiglas with a young one riding on it's back (See picture above) to check out this strange creature on the other side. I felt like I was the one on display. Lastly, I was able to see the Giant Pandas without the crowds. Usually I don't see them because the lines to view them are too long. They are beautiful animals which remind me of big, cuddly teddy bears. Of coarse their teeth and claws would seriously injure you. I look forward to seeing the new panda cub when he is old enough to be put on public display.

The zoo is another great place to get around in a wheelchair. They also have shuttle buses to transport disabled people around the zoo.

San Diego Wild Animal Park

Yesterday I went to the San Diego Wild Animal Park with my nurse, Ernie. It is one of my favorite places to go. I like just to drive around in my chair enjoying the scenery and looking at the animals. I have a yearly membership so I can go as much as I want. It is always enjoyable for me to see animals, especially when they have room to move around. They recently added a new attraction called Journey into Africa to replace the old railway. Like the railway, the new trams drive around the vast enclosures so that the animals can be seen roaming about like in Africa. But, what makes the tram so much better is that it is fully wheelchair accessible. They have a ramp that I drove up into the car, and tie-downs for the wheelchair. It was a very smooth ride and enjoyable. I wasn't able to go on the old railway and always wished they would make it accessible. It is great that they made it possible for wheelchair users to enjoy the ride like everybody else. Another great thing they introduced is a shuttle bus to transport disabled people to and from the far reaches of the park. Overall, the park is very accessible for wheelchairs. They get high marks in my book. I look forward to my next visit.

Jason Hinkle

I have a friend, Jason Hinkle, who is an aspiring documentary filmmaker. He has Friedrich's Ataxia, but this has not stopped him from pursuing his dreams or from enjoying life. He doesn't let his disability get him down. If disabled people are looking for a role model, Jason is it. He has made two short movies which can be viewed on his MySpace page at www.myspace.com/jrhink .

Lucky

Last Saturday, an unexpected bit of happiness entered my life. It was in the form of a cute kitten. I had wanted a pet and this kitten just arrived at the right time.

But, this is no ordinary story. It was serendipity. My sister and her kids drove to Oceanside to meet up with my father so they could drive together to go up to Newport Beach. My sister had to find a place to leave her car. The first place she tried to park she was told that she couldn't park there. After driving around, she finally found a spot on a street alongside the freeway. As my sister was transferring the kids and some things to my father's car she heard frantic meowing nearby. She dropped what she was doing and immediately looked around to find where the sound was coming from. She found the distressed kitten entangled in the vines on the wall dividing the freeway and the street. It appeared that someone had abandoned him. My sister untangled him and he purred as if thanking her for rescuing him. He turned out to be the sweetest little thing. My sister canvassed the local neighborhood, going door to door trying to possibly find the owners. She had no success. But, in one of the last houses she went to lived a kindly old women who had a couple of cats. She agreed to take in the kitten until the owners could be found. If not it would end up in an animal shelter.

The lady put up signs around the area, but there was no response. My sister decided to take the kitten so he wouldn't end up in an animal shelter. She couldn't really keep it, but she knew I wanted a pet. She sent her husband to pick up the kitten. It just so happens that I was visiting my sister when my brother-in-law arrived at the house with the kitten. I fell in love with the kitten right away. This was the pet I was hoping for. I agreed to take him home with me. It was an unexpected stroke of luck.

I decided to name the kitten Lucky because he was lucky to have been saved by my sister, and because it was lucky that he ended up as my pet. It is so enjoyable to watch him play. He sure is full of energy! It is also comforting to have the little guy sleeping on my bed. He is a friendly, good-natured kitten. He purrs when you look at him. He is content to be in a nice place with someone who truly wants him.

Torrey Pines High School Class of 1987 20 Year Reunion

Last Saturday night I attended my 20 year high school reunion. My nurse, Ernie accompanied me. It is hard to believe that 20 years have elapsed since the graduation ceremony on the quad at Torrey Pines High School (Del Mar, California). I remember driving along the procession in my power wheelchair and my mortar board hat kept falling off. My classmate, Evan Himfar, who was following behind me in the procession kept retrieving my hat and putting it back on my head. I never could get hats to stay on my head. But, the highlight of the ceremony was when I drove on stage to accept my diploma, I received a standing ovation from my class. To this day, I cherish that moment.

In some ways it feels that graduation was only yesterday, yet other times it feels like ages ago. Time flies and I am left with fond and not so fond memories. High school was full of a mix of both. Yet if we didn't have bad memories, the fond memories would not be so sweet. I am glad to have been a part of the class of '87. For the most part, it was, and still is a fine group of people.

It was interesting see how everybody has changed in the last 20 years. Some people have changed more than others. Some people were hard to recognize, yet others were unmistakable after all these years. No one had trouble recognizing me. It is hard not to miss me since I was the only student in my class in a wheelchair.

The Reunion was held at the Marriot Hotel Del Mar. Over 2oo people showed up, a far better turnout than the 10 year reunion. People were more at ease at this reunion. After10 years people are still out to prove themselves. After 20 years this pressure is less evident. I felt a positive vibe in that ballroom. People were mingling all over the room. Very few seemed to ever sit down. It was great to hear the joyful sounds of laughter and of delight of reunion with classmates not seen for many years. There was so much chatter that it was hard to hear. Even the music was drowned out. That just proves that there was a good time. Everybody was so busy talking that few people danced. Hearing the music of the times brought back many memories.


I really enjoyed visiting with people I haven't seen in years, and people I didn't know. I felt that they were glad to see me. Many people were probably surprised that I am still alive and kicking. There were times when I wondered if I would see this day. It was even better that I have my voice back so I was able to talk.