Come and join me! What do you have in a row?
My blog is pretty laid back. I like to share jokes, recipes, books I've read, photos I've taken, day-to-day vignettes, and odd or fascinating items. All with a splash of humor. CURRENT HEADER PHOTO: My sister's famous cherry cookies.
Wednesday, June 29, 2011
Signs - Worst Table in the House!
This funny sign was posted at one of our favorite restaurants in Mesa, Arizona - Waldo's Barbeque. In fact, we DID sit at that table once, and there was no smell! (And no, we didn't get 20% off of our bill, either! Is that false advertising?!) This restaurant has great food and lots of funny signs hung throughout the place.
For more signs, visit Lesley here.
Monday, June 27, 2011
Are you ticklish?
I bet not as much as this silly Boston Terrier! I laughed so hard when I saw this that I almost wet my pants!
Enjoy!
Enjoy!
Sunday, June 26, 2011
Sunday Bridges - Carlsbad Pecos River
The town of Carlsbad, New Mexico is famous for its Caverns, but the center of town has a beautiful park that runs along the Pecos River.
This is a pedestrian bridge that straddles the river; here is a view of it from afar.
A close up view.
For more bridges, visit Louis here.
This is a pedestrian bridge that straddles the river; here is a view of it from afar.
A close up view.
For more bridges, visit Louis here.
Friday, June 24, 2011
Weekend Reflections - Architecture on the Menu
I stopped to take a photo of the flowers and was pleased to see the reflection of the buildings from across the street in the windows of this restaurant in Old Market Omaha, NE.
For more Weekend Reflections visit James here.
Thursday, June 23, 2011
Thursday's Things in a Row
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| Old mining train cars for Goldfield Mine at Goldfield, AZ |
Hey everyone! Just wondering if anyone would be interested in joining my "Thursday's Things in a Row" meme. I'm putting my feelers out to see what the interest is before hooking up with Mr. Linky. It would start next Thursday if I get enough interest (5 or more people). Are you game?
Wednesday, June 22, 2011
Tuesday, June 21, 2011
It all started with a simple eye exam......
No, not THAT eye test!
THIS kind!
I went for my annual eye exam at one of those eye places in the mall, like Lenscrafters. We'd gone to this particular place for a couple of years. Because I have diabetes, I make sure the optometrist dilates my eyes for a thorough exam. The doctor said that my optic nerves were swollen, a change from last year's exam.
We were in Arizona at the time, and it was allergy season. The pollen was pretty bad, and I was suffering with sinus congestion. I asked him if this could have caused the problem and he said "no".
He wanted me to check further into it, describing scary scenarios like fluid build-up in my brain, stenosis, and shunts. He wanted me to see my regular doctor and get an MRI of my brain.
Holy-moley! Talk about scaring the bejesus out of someone!
I tried not to panic and figured that I would get the opinion from an ophthalmologist when I got back to Illinois.
In April I made an appointment with a local ophthalmologist, who said that my optic nerves were "elevated", but not "swollen". Oookay then. He wasn't too concerned because he had seen patients with this before. But because I was a traveling gypsy (my words, not his), with no consistency in doctors, he would feel better if I had an MRI of my brain.
The following week I found myself in that situation where you try to cram 10 pounds of crap in a 5 pound bag. Or at least it seemed that way.
Did you ever have an enclosed MRI?
Okay, to start with, I didn't think it was nice that the technician was humming, "If I only had a brain!"
I had to lie down on a table that looked about 4 inches wide.....I'm sure it was wider than that (okay maybe 4 1/2 inches!) The tech was nice and put pillows under my knees to help out my bad back situation. She put some foam rubber under one elbow, my head was cradled in more rubber, then she put a cloth over my eyes. Next she snapped down what looked like a facemask. Then she informed me that she would prop up my other arm after she shoved me in the hole. It was a tight squeeze. I just got in when she realized that she didn't give me the headphones that I requested, so she had to pull me back out, unhook the mask, give me the earphones, and redo everything.
I had to talk myself through the procedure. I kept my eyes closed, tried not to panic, and concentrated on the music. But the pain in my back was intensifying, which caused me to tense up, which caused the pain to worsen. It was a vicious cycle. After about 20 minutes the tech pulled me out and I thought I was done. But no. She had to inject a die into an IV. I had to stretch because I was in so much pain. So she had to unhook the mask and let me sit up a bit. I'll admit, she was pretty understanding. After a couple of minutes, I figured that I'd better get it over with and just suck it up. I had another 10 minutes of pain and then it was over.
The ophthalmologist called me a few days later and said that I should see my regular doctor. He didn't understand the report; it was not his field of expertise. Records were sent, calls were made.
My internist then referred me to a neurologist. After seeing him, he felt that I should have a sleep apnea test. The MRI showed a couple of white spots on my brain, like small mini strokes. This could be attributed to sleep apnea.
My internist had wanted me to have a sleep apnea test for a couple of years now (because of my heavy snoring and always being tired), but I had been putting it off. I did not want to sleep in some lab like a rat with somebody watching me.
I told as much to the neurologist.
"I don't want to do this."
"Why not? I've heard all the excuses. Try me. I've been doing this for 19 years now," he said.
"Well, for one, I always have to go to the bathroom in the middle of the night," I said whining.
"No big deal. You just unhook one thing. Go on."
"I'm always so freakin' hot! You know....menopause! I have to sleep naked!" I exclaimed.
"Well, I'm telling you right now, you are NOT going to sleep naked!" He laughed."Besides, there are fans in the room!"
I laughed, too, and figured it would probably be alright.
So Monday night was the big night.
I arrived at 9:20 pm.
The tech's name was Ivan, like Ivan-the-Terrible. Only he was really nice.
I asked him if I could take pictures for my blog.
"Oh sure, go ahead! Take all the pictures you want!"
Here is my room for the evening. (Notice the fan in the corner. Yes!)
Notice the camera up near the ceiling. (I tried not to think about it when I was in the bed!)
All the stuff that was going to be attached to ME!
Ivan told me to relax and that he wasn't going to be ready for me for about an hour. In the meantime, I was to fill out pages and pages of paperwork (health history, questionnaire, etc.,) and watch a DVD about sleep apnea.
About 10:30 Ivan came in and told me to get ready for bed. The bathroom was right next door to my room, but I had to share it with another patient across from my room. That was the only part that I didn't care for, although the whole procedure was done with the utmost discretion. I never saw the other patient until the next morning.
I came back in the room in my nightgown and Ivan proceeded to hook me up. It took about 40-45 minutes to get ready. Ivan answered all my questions. First he washed my face where he was going to attach the leads. He used some kind of exfoliate to remove the dead skin cells. Then he put on some goop, then attached the leads. He measured my head, then marked it with a red clay marker where to place the leads. Next he washed where he was going to put the leads. The marks didn't come off.
I had 15 leads on my head, 6 on my legs (3 on each) 4 heart monitors (EKG), tube in nose to measure air, a monitor on my finger to measure the oxygen level in my blood (not shown), belt on upper chest with lead to measure depth of breath, and lead on abdomen to measure depth of breath.
It wasn't as bad as this:
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| Anthony Hopkins as Hannibal Lector |
No laughing now! This is a public service announcement! Do you realize how hard it was for me to put this photo on the internet?
The leads on my chin would measure if I grind me teeth in my sleep, the ones near my eyes kept track of eye movement and would register when I was in REM. In fact, the test could identify 89 different sleep disorders! The leads on my legs would register if I had restless leg syndrome! I was truly amazed.
I crawled in bed carefully and tried to get comfortable.
Ivan explained that if I had to go to the bathroom in the middle of the night, just to call out and he would hear me.
I opted to go right to bed and not to read or watch TV, so Ivan turned out the lights when he left. But I had to do one more thing.
Ivan's voice piped into the room near my head.
"Pat? Can you hear me?" He asked.
"Yes."
"Okay, I want you to open your eyes and look at the ceiling."
I did as he instructed.
Ivan talked me through some more eye exercises, then some breathing ones, and finally I had to move my toes on each foot.
Finally it was nighty-night time.
As if!
The good news was, the bed was pretty comfortable. The bad news was, I felt like I had on a too-tight bra. And I had something shoved up my nose. But pretty soon I drifted off to sleep. I remember tossing and turning a few times and then, uh-oh, the dreaded I-have-to-go-to-the-bathroom time.
"Ivan?" I called out.
Nothing.
"Hello?"
Nothing.
"I HAVE TO GO TO THE BATHROOM!" I said a little louder.
"Okay, I'll be right there!" My guardian angel piped back.
Within seconds Ivan came into my room. He grabbed this black box that all the leads were attached to, approximately 12" long x 3 " wide x 1 1/2 " deep, with a long handle, and hung it around my neck. (It was a little heavy.) Then I schlepped my way to the bathroom, looking like some robotic middle-aged zombie in a nightgown. I glanced at my watch. 3:30 am. I managed to pee without electrocuting myself (I don't know if that was even possible to do), and came back to the room where Ivan was waiting patiently. He removed the black box and put it back on the nightstand.
"Good night!" He said cheerfully and departed.
Only problem was, he didn't fix the wires like he did the first time I got in bed. So the leads coming off my legs were too short, and I was lying in bed like a damn puppet with bent legs. I should have just called out to him to come and fix it, but I didn't want to bother him. So I finagled the wires myself to at least the length that I could straighten my legs.
I heard Ivan wake up the patient across the hall; I knew I was next. Sure enough within the next 20 minutes Ivan was knocking at my door.
"Time to get up!"
It took him a lot less time to pull all the paraphernalia off of me than what it did to put it on!
I was out the door by 6:20 am.
I survived my night as a lab rat.
Results to follow.
Monday, June 20, 2011
Three Year Blogiversary - Old Post Revisited
Last week was my third year anniversary of writing this blog. It started out as more of a journal of our travels, but expanded to include my thoughts and feelings on a variety of topics, a shot of humor here and there, and mostly just a slice of life.
This is a re-post of the second blog entry I wrote back in July 2008 - I don't think anyone even read it; at least no one commented back then!
There is a pasture right next to our campground where several cows graze. I’ve come to know their daily schedule – when their morning hay is thrown out for them to feed, when they move to the front of the pasture towards the road to get relief from the hot sun, when they move to the back of the pasture later in the day. They’ve become quite used to me coming up to the fence, clicking away with the camera and talking to them. In the beginning I was charged by a brown bull. It was frightening and I was happy he was on one side of the fence and me on the other. Once he saw that I meant no harm and I spoke calmly and quietly, he just turned and walked away.
I would love to watch them eat the hay. They would immerse themselves in it.
They’d grab some hay, throw it up in the air – some would land on their backs, some their necks.
Sometimes two cows would be chewing on the same wad of hay
and it would look like the scene from the Disney movie, “Lady and the Tramp” when the two dogs share one piece of spaghetti and chew it till their mouths meet in the middle.
I loved the stillness of the countryside except for the steady munching of the hay by the herd of cows.
I liked to rip out the tall grass growing along the fence line and reach far over it to feed the cows. Their big, wet noses would sniff my hand and out would come their black tongues to lick up the sweet grass. Their breath would smell like warm milk. One day a cow got a little too close to the electric fence and got a shock from it. I heard the zap and he jumped back and boy did he give me a dirty look. I tried to explain that it was not my fault, but I don’t think he believed me.
I usually tried to capture the beautiful sunsets which always occurred just beyond their pasture.
By now the cows were so familiar with me that they would start to congregate near the fence - I suppose hoping for a hand out. I didn’t bring my tripod along for the camera, so I rested my elbow on the fence post to steady my arm, looked in the small viewfinder to focus on the sunset and began clicking away. I didn't realize that the cows were crowding in around me as close as was possible without touching the electric fence. One tall cow, who’s head came over the fence, leaned over and snorted his warm breath and wet nose right in my ear. I let out a yelp because he scared the bejesus out of me, and that, in turn, caused a little stampede! The cows all scattered about 10 feet away from me. After I stopped laughing I told them I was sorry that I had scared them but turnabout was fair play.
I came to love these giant, gentle beasts with their big eyes, long eyelashes and comical ways. I wanted to name each and every one of them instead of calling them by their tag numbers clipped to their ears. I will miss them when we leave here.
This is a re-post of the second blog entry I wrote back in July 2008 - I don't think anyone even read it; at least no one commented back then!
There is a pasture right next to our campground where several cows graze. I’ve come to know their daily schedule – when their morning hay is thrown out for them to feed, when they move to the front of the pasture towards the road to get relief from the hot sun, when they move to the back of the pasture later in the day. They’ve become quite used to me coming up to the fence, clicking away with the camera and talking to them. In the beginning I was charged by a brown bull. It was frightening and I was happy he was on one side of the fence and me on the other. Once he saw that I meant no harm and I spoke calmly and quietly, he just turned and walked away.
I would love to watch them eat the hay. They would immerse themselves in it.
They’d grab some hay, throw it up in the air – some would land on their backs, some their necks.
and it would look like the scene from the Disney movie, “Lady and the Tramp” when the two dogs share one piece of spaghetti and chew it till their mouths meet in the middle.
I loved the stillness of the countryside except for the steady munching of the hay by the herd of cows.
I liked to rip out the tall grass growing along the fence line and reach far over it to feed the cows. Their big, wet noses would sniff my hand and out would come their black tongues to lick up the sweet grass. Their breath would smell like warm milk. One day a cow got a little too close to the electric fence and got a shock from it. I heard the zap and he jumped back and boy did he give me a dirty look. I tried to explain that it was not my fault, but I don’t think he believed me.
I usually tried to capture the beautiful sunsets which always occurred just beyond their pasture.
By now the cows were so familiar with me that they would start to congregate near the fence - I suppose hoping for a hand out. I didn’t bring my tripod along for the camera, so I rested my elbow on the fence post to steady my arm, looked in the small viewfinder to focus on the sunset and began clicking away. I didn't realize that the cows were crowding in around me as close as was possible without touching the electric fence. One tall cow, who’s head came over the fence, leaned over and snorted his warm breath and wet nose right in my ear. I let out a yelp because he scared the bejesus out of me, and that, in turn, caused a little stampede! The cows all scattered about 10 feet away from me. After I stopped laughing I told them I was sorry that I had scared them but turnabout was fair play.
I came to love these giant, gentle beasts with their big eyes, long eyelashes and comical ways. I wanted to name each and every one of them instead of calling them by their tag numbers clipped to their ears. I will miss them when we leave here.
Saturday, June 18, 2011
Brenda's Photo Challenge - Playing
For Brenda's Photo Challenge, the theme is "Playing". This is a photo of my great niece, Brooklyn, taken at a birthday party. There was a blow-up water slide, and although I thought Brooklyn was too young to go down it herself, she proved me wrong! She is one tough cookie!
Click HERE to see more photos for this challenge.
Click HERE to see more photos for this challenge.
Friday, June 17, 2011
Repercussions of Malignant Hyperthermia
In my last post I discussed Malignant Hyperthermia (MH) and how it pertains to my son and daughter.
Now I'll explain how it may be affecting Lily (besides that she may have inherited the MH gene).
Lily was a healthy size baby - 8+ pounds, born January 09. She did have more than the average problems breast feeding, and so was given a bottle. Usually babies double their weight by their fourth month; Lily was around 16 lbs at a year old.
She wasn't hitting any of the milestones of crawling or pulling herself up on furniture, etc. When we all got together for Christmas, my sister was the first to notice that something was wrong when she held Lily.
"Don't you notice that Lily kind of flops around when you pick her up? That she doesn't hold herself up?" She asked.
Jessica noticed the difference with her cousin's babies who were all near to Lily's age. Previously, when Jessica had mentioned the lack of Lily's mobility to her pediatrician, the doctor said, "Oh, don't worry, she'll get there." The doctor kept saying that. I felt she was wrong. Jessica agreed. So she switched doctors.
The new pediatrician examined Lily and saw some issues right away. She recommended that Jessica take Lily to Easter Seals for evaluation. After many interviews, evaluations and home visits, they concluded that Lily had a condition called "slip-through", where the baby feels like they would "slip-through" your hands when you pick them up. They also said that Lily had low muscle tone throughout her WHOLE body; including her jaw and tongue. This is why she had problems eating, especially solid foods. She would choke quite often. They recommended that Lily get physical therapy and speech therapy several times a month. (Lily is currently getting therapy through a state-run program.)
Lily began walking at 22 months and now she runs around the house. She has to wear teeny tiny braces on her feet that fit into her special shoes (they look like gym shoes).
Another concern about Lily is her size. She is very small and doesn't seem to be growing very much. She still wears a size 18 month size pants and she is now 29 months old. She weighs 24 pounds. She is very short. Jessica and Dave took her to a geneticist. After taking an in-depth history from both of them, Jessica just happened to mention that she had MH.
The doctor really jumped on that. He said that the problems Lily is experiencing could be a form of MH, and what is called Central Core Disease. He said that she definitely has Hypotonia, another name for low muscle tone in the body, but that disease has a wide spectrum of problems from minimal to severe. Luckily Lily is on the low end.
She has a problem with her vision; one eye or the other will wander. When that happens the straight eye will compensate and the brain will shut off the vision from the wandering eye. For now Jessica and Dave have to try and put an eye patch on each of Lily's eyes (alternating days) for 2 hrs/day, for two months. If this doesn't help strengthen the muscles in the eyes, then surgery will be necessary.
Of course, we need to know if Lily has MH before any surgery is done.
And thus, we want Jessica to have the marker in her blood.
Kids with hypotonia tend to sit back and observe what's happening; they know their limitations. We've seen this happen with Lily. But where she may fall behind physically, she is WAY ahead cognitively.
Lily has an upcoming visit with an endocrinologist to see if there is any issues with her growth. The geneticist didn't find anything in the chromosomal study.
It's pretty sad that Lily is so used to going to the doctors that she thinks that's the only place they ever go.
"Come on, Lily, let's go," Jess will say to her, getting her ready to go to the store, the library, or wherever.
Lily will reply, "Doctor?"
Luckily, the majority of doctors have been extremely nice to Lily.
Remember George?
Lily takes him EVERYWHERE, especially to the doctors. And the doctors ALWAYS examine George FIRST, looking into his eyes, listening to his heart, etc. It is wonderful how they take the time to do this.
And so, that is the story behind my Lovely Little Lily, who will always have a special place in my heart.
Now I'll explain how it may be affecting Lily (besides that she may have inherited the MH gene).
Lily was a healthy size baby - 8+ pounds, born January 09. She did have more than the average problems breast feeding, and so was given a bottle. Usually babies double their weight by their fourth month; Lily was around 16 lbs at a year old.
She wasn't hitting any of the milestones of crawling or pulling herself up on furniture, etc. When we all got together for Christmas, my sister was the first to notice that something was wrong when she held Lily.
"Don't you notice that Lily kind of flops around when you pick her up? That she doesn't hold herself up?" She asked.
Jessica noticed the difference with her cousin's babies who were all near to Lily's age. Previously, when Jessica had mentioned the lack of Lily's mobility to her pediatrician, the doctor said, "Oh, don't worry, she'll get there." The doctor kept saying that. I felt she was wrong. Jessica agreed. So she switched doctors.
The new pediatrician examined Lily and saw some issues right away. She recommended that Jessica take Lily to Easter Seals for evaluation. After many interviews, evaluations and home visits, they concluded that Lily had a condition called "slip-through", where the baby feels like they would "slip-through" your hands when you pick them up. They also said that Lily had low muscle tone throughout her WHOLE body; including her jaw and tongue. This is why she had problems eating, especially solid foods. She would choke quite often. They recommended that Lily get physical therapy and speech therapy several times a month. (Lily is currently getting therapy through a state-run program.)
Lily began walking at 22 months and now she runs around the house. She has to wear teeny tiny braces on her feet that fit into her special shoes (they look like gym shoes).
Another concern about Lily is her size. She is very small and doesn't seem to be growing very much. She still wears a size 18 month size pants and she is now 29 months old. She weighs 24 pounds. She is very short. Jessica and Dave took her to a geneticist. After taking an in-depth history from both of them, Jessica just happened to mention that she had MH.
The doctor really jumped on that. He said that the problems Lily is experiencing could be a form of MH, and what is called Central Core Disease. He said that she definitely has Hypotonia, another name for low muscle tone in the body, but that disease has a wide spectrum of problems from minimal to severe. Luckily Lily is on the low end.
She has a problem with her vision; one eye or the other will wander. When that happens the straight eye will compensate and the brain will shut off the vision from the wandering eye. For now Jessica and Dave have to try and put an eye patch on each of Lily's eyes (alternating days) for 2 hrs/day, for two months. If this doesn't help strengthen the muscles in the eyes, then surgery will be necessary.
Of course, we need to know if Lily has MH before any surgery is done.
And thus, we want Jessica to have the marker in her blood.
Kids with hypotonia tend to sit back and observe what's happening; they know their limitations. We've seen this happen with Lily. But where she may fall behind physically, she is WAY ahead cognitively.
Lily has an upcoming visit with an endocrinologist to see if there is any issues with her growth. The geneticist didn't find anything in the chromosomal study.
It's pretty sad that Lily is so used to going to the doctors that she thinks that's the only place they ever go.
"Come on, Lily, let's go," Jess will say to her, getting her ready to go to the store, the library, or wherever.
Lily will reply, "Doctor?"
Luckily, the majority of doctors have been extremely nice to Lily.
Remember George?
Lily takes him EVERYWHERE, especially to the doctors. And the doctors ALWAYS examine George FIRST, looking into his eyes, listening to his heart, etc. It is wonderful how they take the time to do this.
And so, that is the story behind my Lovely Little Lily, who will always have a special place in my heart.
Thursday, June 16, 2011
Because you care...
I want to thank everyone for their concern about my daughter, Jessica, and her blood test. I didn't mean to seem so mysterious about it. It's just that it's kind of a long story. Scratch that. It IS a long story!
My son, Jason, had a lot of medical issues growing up. In particular, he was born with a hole in his heart and was in congestive heart failure at 5 weeks old. He was put on Digitalis, a medication to slow and strengthen each heart beat. He was on that for a year. Jason was small for his age and hit the milestones of crawling and walking within the normal range, but just at the very end, like walking at 15 months, sitting up at 9 months, etc. I attributed this to the medication, although the doctors all told me that wasn't the reason. He suffered from numerous ear infections, especially the first year of his life, and they continued on through his youth. (As a matter of fact, he STILL gets them, and he's going to be 33 years old!)
Nothing was ever easy for my son. "Simple" procedures often went awry for whatever reason. One time when he had tubes put in his ears (to cut down on infections), the IV went funny and blew a vein or something and his whole arm swelled up. Another time he went in to have his tonsils and adnoids removed in an outpatient facility and after the surgery he began hemorrhaging so the doctors had to go back in and pack his nose and throat and stop the bleeding. Then we had to get an ambulance to move him to the hospital (across the parking lot) to intensive care overnight for observations.
Jason had tubes put in his ears about four times. The last time it was done, he was about 11 years old. Again, an outpatient procedure. I knew something was wrong as soon by the look on the young ENT doctor's face as soon as he came out of surgery.
"We had to call the surgery. Your son started suffering arrhythmia (irregular heart beat)," he said.
"Oh my God, is he alright?" I asked quickly, my own heart beating irregularly.
"Yes, but," the doctor hesitated, "because your son moved his head a little, I dropped the tube into his middle ear. That's where it will stay."
Well.
Jason was wheeled to recovery and he seemed okay. But then he needed to go to the bathroom. He told me that all his muscles hurt, and indeed, he was bent over and walked like an old man. I helped him to the bathroom where he proceeded to urinate. I waited outside. I went back in to flush the toilet and saw that the urine was almost brown colored! My heart just about fell out of my chest. I KNEW something bad was happening.
I called the nurse and told her.
She, in turn, called the anesthesiologist.
The anesthesiologist came down to recovery and said, "Well, there is this RARE thing called MALIGNANT HYPERTHERMIA (MH). It is a reaction to anesthesia. I just CAN'T imagine that your son has this! The patient's temperature goes sky high."
Jason ended up staying in the hospital for 5 days. They flushed fluids through him like you wouldn't believe. They weren't sure IF he had MH.
If a patient is given an inhalant anesthesia COMBINED with a muscle relaxant (for instance if they need to intubate the patient), which they did in the case with Jason, it can cause this reaction.
You can develop this allergic reaction at any time. The record is a patient who had 39 surgeries, and on the 40th surgery got MH.
Jason had numerous surgeries before this particular one.
That week in the hospital they did a blood test called "CPK". The usual rate is no higher than 140. Jason's was 160,000.
If a patient suddenly has a MH reaction, the doctor HAS to administer dantrolene. Since the introduction of this drug in the 1960's, death by MH had dropped 80%. (per Wikipedia). (Unfortunately, when this was taking place in the early 80's with my family, many doctors never heard of MH, and some hospitals actually SHARED the dantrolene because it was expensive and had a short shelf life! How stupid is that! If a patient needed it on the operating table, they needed it AT THAT MOMENT!)
The only TRUE way to check if a person has MH is to do a muscle biopsy. About a 1 1/2 inch incision is made into the thigh, and a square inch of the muscle is cut out. Many tests are done to the muscle, include bathing it in caffeine. There are only 6 hospitals in North America (4 in the United States) that can conduct the tests. The biopsy cannot be sent by mail We were lucky that Northwestern University in Chicago was doing biopsies at the time.
Jason tested positive for MH.
Surprise, surprise.
This made me wonder about Jessica.
A few years later I had HER tested.
She, too, tested positive.
That was rare. Very rare. Now it seemed like we were on to something.
It turns out that MH must run in my ex-husband's family. A brother and niece also tested positive. A sister tested negative. So far 4/5 people have MH. That is NOT good odds.
Back to Jessica's blood test. I know. This is a long story. Bear with me.
In recent years it was discovered that there COULD be a marker in the blood called RYR1 to indicate MH. Fifty percent of the people who have MH will have the marker. So. You can HAVE MH and NOT have the marker, or HAVE MH AND have the marker.
If you have the marker, then ALL family members who have MH will have the marker.
Clear?
We already know that Jessica has MH.
We want to know if she has the marker. We are, in fact, HOPING, that she has the marker.
If she has the RYR1 marker, this will save countless of people from having the biopsy done. They would only need to have the blood test done. Granted the blood test cost a pretty penny ($750), but still less than an outpatient procedure at the nearest hospital from IL - in Minneapolis.
It takes 45 days for the results of the test.
So say a prayer that Jess has the marker.
Because, not only will it help my nieces, nephew, and their children (my sister and I married brothers the first time around!), but also this directly affects my lovely granddaughter Lily.
And that's a WHOLE other story. Part Two next post.
For more information on Malignant Hyperthermia, visit www.mhaus.org or this link to Wikipedia.
By the way, Jason NEVER required open heart surgery; the hole in the heart healed on its own. The doctors thought it was a miracle due the the size and location of the hole; I wasn't surprised as I had so many people praying for little Jason. We all know the power of prayer!
My son, Jason, had a lot of medical issues growing up. In particular, he was born with a hole in his heart and was in congestive heart failure at 5 weeks old. He was put on Digitalis, a medication to slow and strengthen each heart beat. He was on that for a year. Jason was small for his age and hit the milestones of crawling and walking within the normal range, but just at the very end, like walking at 15 months, sitting up at 9 months, etc. I attributed this to the medication, although the doctors all told me that wasn't the reason. He suffered from numerous ear infections, especially the first year of his life, and they continued on through his youth. (As a matter of fact, he STILL gets them, and he's going to be 33 years old!)
Nothing was ever easy for my son. "Simple" procedures often went awry for whatever reason. One time when he had tubes put in his ears (to cut down on infections), the IV went funny and blew a vein or something and his whole arm swelled up. Another time he went in to have his tonsils and adnoids removed in an outpatient facility and after the surgery he began hemorrhaging so the doctors had to go back in and pack his nose and throat and stop the bleeding. Then we had to get an ambulance to move him to the hospital (across the parking lot) to intensive care overnight for observations.
Jason had tubes put in his ears about four times. The last time it was done, he was about 11 years old. Again, an outpatient procedure. I knew something was wrong as soon by the look on the young ENT doctor's face as soon as he came out of surgery.
"We had to call the surgery. Your son started suffering arrhythmia (irregular heart beat)," he said.
"Oh my God, is he alright?" I asked quickly, my own heart beating irregularly.
"Yes, but," the doctor hesitated, "because your son moved his head a little, I dropped the tube into his middle ear. That's where it will stay."
Well.
Jason was wheeled to recovery and he seemed okay. But then he needed to go to the bathroom. He told me that all his muscles hurt, and indeed, he was bent over and walked like an old man. I helped him to the bathroom where he proceeded to urinate. I waited outside. I went back in to flush the toilet and saw that the urine was almost brown colored! My heart just about fell out of my chest. I KNEW something bad was happening.
I called the nurse and told her.
She, in turn, called the anesthesiologist.
The anesthesiologist came down to recovery and said, "Well, there is this RARE thing called MALIGNANT HYPERTHERMIA (MH). It is a reaction to anesthesia. I just CAN'T imagine that your son has this! The patient's temperature goes sky high."
Jason ended up staying in the hospital for 5 days. They flushed fluids through him like you wouldn't believe. They weren't sure IF he had MH.
If a patient is given an inhalant anesthesia COMBINED with a muscle relaxant (for instance if they need to intubate the patient), which they did in the case with Jason, it can cause this reaction.
You can develop this allergic reaction at any time. The record is a patient who had 39 surgeries, and on the 40th surgery got MH.
Jason had numerous surgeries before this particular one.
That week in the hospital they did a blood test called "CPK". The usual rate is no higher than 140. Jason's was 160,000.
If a patient suddenly has a MH reaction, the doctor HAS to administer dantrolene. Since the introduction of this drug in the 1960's, death by MH had dropped 80%. (per Wikipedia). (Unfortunately, when this was taking place in the early 80's with my family, many doctors never heard of MH, and some hospitals actually SHARED the dantrolene because it was expensive and had a short shelf life! How stupid is that! If a patient needed it on the operating table, they needed it AT THAT MOMENT!)
The only TRUE way to check if a person has MH is to do a muscle biopsy. About a 1 1/2 inch incision is made into the thigh, and a square inch of the muscle is cut out. Many tests are done to the muscle, include bathing it in caffeine. There are only 6 hospitals in North America (4 in the United States) that can conduct the tests. The biopsy cannot be sent by mail We were lucky that Northwestern University in Chicago was doing biopsies at the time.
Jason tested positive for MH.
Surprise, surprise.
This made me wonder about Jessica.
A few years later I had HER tested.
She, too, tested positive.
That was rare. Very rare. Now it seemed like we were on to something.
It turns out that MH must run in my ex-husband's family. A brother and niece also tested positive. A sister tested negative. So far 4/5 people have MH. That is NOT good odds.
Back to Jessica's blood test. I know. This is a long story. Bear with me.
In recent years it was discovered that there COULD be a marker in the blood called RYR1 to indicate MH. Fifty percent of the people who have MH will have the marker. So. You can HAVE MH and NOT have the marker, or HAVE MH AND have the marker.
If you have the marker, then ALL family members who have MH will have the marker.
Clear?
We already know that Jessica has MH.
We want to know if she has the marker. We are, in fact, HOPING, that she has the marker.
If she has the RYR1 marker, this will save countless of people from having the biopsy done. They would only need to have the blood test done. Granted the blood test cost a pretty penny ($750), but still less than an outpatient procedure at the nearest hospital from IL - in Minneapolis.
It takes 45 days for the results of the test.
So say a prayer that Jess has the marker.
Because, not only will it help my nieces, nephew, and their children (my sister and I married brothers the first time around!), but also this directly affects my lovely granddaughter Lily.
And that's a WHOLE other story. Part Two next post.
For more information on Malignant Hyperthermia, visit www.mhaus.org or this link to Wikipedia.
By the way, Jason NEVER required open heart surgery; the hole in the heart healed on its own. The doctors thought it was a miracle due the the size and location of the hole; I wasn't surprised as I had so many people praying for little Jason. We all know the power of prayer!
Wednesday, June 15, 2011
I said STOP!
Maybe if more stop signs resembled this one, people wouldn't tend to blow right through them! This one was stationed outside of an Arts Center in Mississippi.
For more fun and interesting signs, join Lesley here.
Monday, June 13, 2011
Hanging out at the Zoo Part 2
I left off yesterday at the dolphin show, which was just about to begin!
Pretty soon the show started and it was quite exciting! Several trainers came out and there was a flurry of activities with the dolphins!
Soon the dolphins were jumping high out of the water. I had to draw an arrow to show this dolphin just "punching" a red ball hanging from the ceiling. He kind of gets lost in the scenery!
This dolphin came right up on the deck to greet the trainer.
Another air-defying jump!
One of the trainers, named Beth, got into the water and swam and did tricks with each dolphin.
Here she is holding on to one of the dolphin's fins and being pulled all over the pool. Doesn't she look happy? (Actually ALL the trainers had smiles on their faces!)
I was a little jealous. There was a small part of me that wished I was her. But then I had a "Cher-snap-out-of-it" moment when I realized that:
Back to the show.
The show lasted about 25-30 minutes. It was the BEST part of the day at the zoo. I was able to rest my weary body. Although it was very warm in there and I was sweating like a fat lady. Wait. I AM a fat lady. There were two Muslim ladies sitting in front of me. Both had on long pants, LONG SLEEVED SWEATERS, then one had on a sleeveless top over the sweater and her long scarf covering all her hair. The other woman had on a long sleeved top covering the sweater and a long scarf covering all her hair.
I was hot just looking at them.
And I don't mean like in the "switching sides" kind of way.
I did not see one bead of sweat on them.
They DID use the zoo maps as fans.
But still.
I was wearing capri jeans and a short sleeve top, socks and gym shoes and I was on fire.
Of course, these women were half the woman I was. Maybe that helped. I don't know. But when they were fanning themselves I thought it would be too presumptuous of me to stick my head between them so I could feel some of the air, wouldn't you agree?
Well, it didn't matter because the problem was solved soon enough. The show was coming to an end when all of a sudden a dolphin came to a stop right in front of our section, lifted his tail, and smack! We were deluged with salt water! I was totally unprepared for that! In fact, my mouth was open so I got a big gulp of it! My eyes burned, not only from the salt water, but also from my mascara running (yeah, picture Tammy Faye Baker), my camera was wet, and I reeked of fish.
It's true that we were warned that it was possible that the first 6 rows could get wet - they were known as the "splash zone seats", but since the show was just about over I thought we were safe.
Guess again.
My camera was okay, thankfully.
We continued on to below deck to see the dolphins underwater.
The seals were enjoyable to watch and they came right up to the window.
We went to the petting zoo, which turned out to be another disappointment. I remember there being more animals for the kids to pet. On our visit there were only baby goats available.
Lily lives with two rambunctious dogs and three cats, so she is NOT afraid of animals. Here she is brushing a big goat.
We saw some cows, baby chicks, reindeer and birds of prey, but nothing else that kids could pet. It WAS called the petting zoo, though. It was weird, like an off day. It wasn't too crowded, even though it was June. The Chicago Public Schools weren't out yet, so maybe that's why it wasn't too crowded. But still.
It was cute to see this worker try to shepherd this gaggle of geese to where they were supposed to go.
We hopped on the tram and rode it completely around the zoo. It felt good when we stopped in the shade. And looking at these two fountains in the pond cooled me off a little, too.
Lily is so used to me carrying my camera around and taking pictures of her that now when she does something she'll say, "Grandma, picture?" In this instance, she is pretending to be asleep!
I say a few words to her and I get this! (Hard for her to keep her eyes shut!)
We passed this beautiful display of flowers shaped like a butterfly.
Before long, Lily is really sleeping and DaDa carries her to the car.
A fun time was had by all.
Lily's little nap lasted till we put her in her car seat. Then she talked all the way to our house....about an hour and a half drive! At one point Papa said, "Lily, let's sleep!" And he closed his eyes and pretended to snore.
Lily looked at me and said, "Gamma, sleep!" Then she leaned her head to the side and made snoring noises!
I laughed so hard that I almost wet myself.
She laughed and said, "Gamma, picture?"
Pretty soon the show started and it was quite exciting! Several trainers came out and there was a flurry of activities with the dolphins!
Soon the dolphins were jumping high out of the water. I had to draw an arrow to show this dolphin just "punching" a red ball hanging from the ceiling. He kind of gets lost in the scenery!
This dolphin came right up on the deck to greet the trainer.
Another air-defying jump!
Here she is holding on to one of the dolphin's fins and being pulled all over the pool. Doesn't she look happy? (Actually ALL the trainers had smiles on their faces!)
I was a little jealous. There was a small part of me that wished I was her. But then I had a "Cher-snap-out-of-it" moment when I realized that:
- I'd have to wear a wetsuit, and
- I'd have to actually LEARN how to swim.
Back to the show.
The show lasted about 25-30 minutes. It was the BEST part of the day at the zoo. I was able to rest my weary body. Although it was very warm in there and I was sweating like a fat lady. Wait. I AM a fat lady. There were two Muslim ladies sitting in front of me. Both had on long pants, LONG SLEEVED SWEATERS, then one had on a sleeveless top over the sweater and her long scarf covering all her hair. The other woman had on a long sleeved top covering the sweater and a long scarf covering all her hair.
I was hot just looking at them.
And I don't mean like in the "switching sides" kind of way.
I did not see one bead of sweat on them.
They DID use the zoo maps as fans.
But still.
I was wearing capri jeans and a short sleeve top, socks and gym shoes and I was on fire.
Of course, these women were half the woman I was. Maybe that helped. I don't know. But when they were fanning themselves I thought it would be too presumptuous of me to stick my head between them so I could feel some of the air, wouldn't you agree?
Well, it didn't matter because the problem was solved soon enough. The show was coming to an end when all of a sudden a dolphin came to a stop right in front of our section, lifted his tail, and smack! We were deluged with salt water! I was totally unprepared for that! In fact, my mouth was open so I got a big gulp of it! My eyes burned, not only from the salt water, but also from my mascara running (yeah, picture Tammy Faye Baker), my camera was wet, and I reeked of fish.
It's true that we were warned that it was possible that the first 6 rows could get wet - they were known as the "splash zone seats", but since the show was just about over I thought we were safe.
Guess again.
My camera was okay, thankfully.
We continued on to below deck to see the dolphins underwater.
The seals were enjoyable to watch and they came right up to the window.
We went to the petting zoo, which turned out to be another disappointment. I remember there being more animals for the kids to pet. On our visit there were only baby goats available.
Lily lives with two rambunctious dogs and three cats, so she is NOT afraid of animals. Here she is brushing a big goat.
We saw some cows, baby chicks, reindeer and birds of prey, but nothing else that kids could pet. It WAS called the petting zoo, though. It was weird, like an off day. It wasn't too crowded, even though it was June. The Chicago Public Schools weren't out yet, so maybe that's why it wasn't too crowded. But still.
It was cute to see this worker try to shepherd this gaggle of geese to where they were supposed to go.
We hopped on the tram and rode it completely around the zoo. It felt good when we stopped in the shade. And looking at these two fountains in the pond cooled me off a little, too.
Lily is so used to me carrying my camera around and taking pictures of her that now when she does something she'll say, "Grandma, picture?" In this instance, she is pretending to be asleep!
I say a few words to her and I get this! (Hard for her to keep her eyes shut!)
We passed this beautiful display of flowers shaped like a butterfly.
Before long, Lily is really sleeping and DaDa carries her to the car.
A fun time was had by all.
Lily's little nap lasted till we put her in her car seat. Then she talked all the way to our house....about an hour and a half drive! At one point Papa said, "Lily, let's sleep!" And he closed his eyes and pretended to snore.
Lily looked at me and said, "Gamma, sleep!" Then she leaned her head to the side and made snoring noises!
I laughed so hard that I almost wet myself.
She laughed and said, "Gamma, picture?"
Sunday, June 12, 2011
Hanging out at the Zoo
Last week Jim and I joined our daughter, Jessica, son-in-law, Dave, and granddaughter, Lily, on a two hour drive to downtown Chicago.
We had to get an early start. And Lily takes after her mother, who takes after HER MOTHER, who is not a morning person!
First stop - The University of Illinois (UIC) Chicago Hospital for a special blood test that my daughter needed to have done. (future post)
Papa and I waited with Lily outside at a park across the street from the hospital.
Papa helped Lily put on her "crocodiles" (what we call her shoes since she can't pronounce "cr" and calls them her "cocks"!)
This is Lily's beloved George. He goes everywhere with her.
Lily was awestruck with the sounds of the city. The elevated train tracks were half a block away, and trains came by frequently. Lily is used to the sounds of trains since they run through her home town, but they are a combination of freight trains AND Amtrak and they have whistles. These trains did NOT have whistles. That seemed to puzzle her. There was a lot of activity happening; buses and cars driving by; people walking down the sidewalk. Some people joined us where we were sitting and Lily was quick to yell out "HI!" and wave her tiny hand. An ambulance came rushing down the street with the sirens blasting, but Lily felt safe in Papa's arms. She is familiar with sirens because the fire department is not too far from her home. Lily says when she hears a siren that "they are going to help" and that "someone has an owie".
Soon Jessica was done and we headed off to our next stop - Brookfield Zoo.
The day was overcast when we had left home, but by the time we got to the zoo it was sunny. And hot. And humid. Temps got to in the 90's and the humidity was high. Yeah!
I was happy to see some of the animals in open areas with grass.
Here are the polar bears.
I took this next picture while standing outside but there still was a thick piece of glass and/or plexiglass separating us from the polar bear. It was feeding time and there was this big hunk of meat sitting on the log. I was able to get a photo right when the bear grabbed the meat.
This grizzly bear had the right idea in the oppressive heat. His brother just looked on in the background.
Recent addition to the zoo were these injured pelicans who can no longer fly.
We saw the true meaning of Mother Goose! She had 16 babies!
I grew up going to Brookfield Zoo. I took my kids there when they were little. The last time I was there was probably 8 years ago. I was dismayed to see how rundown it seemed. Yet it cost $20.50 for admission that included three additional options - we chose the petting zoo, dolphin show, and the tram.
Some of the exhibits were closed, some were being remodeled, and some we were appalled at what the animals were kept in.
Take the baboons, for instance. I remember there being many, many baboons running up and down the fake rocks. There was a moat running along the bottom.
On this particular day, there were only 3 or 4 baboons. There was no moat.
And this baboon was chewing on plastic water bottles! I was really upset by this!
This one was playing will a long piece of red plastic.
We went into the monkey house and saw more fake rocks and fake trees.Where was the natural habitat? How about some grass? Trees? Leaves?
These gorillas had a very small space to live, again with just fake rocks and trees. It was so sad. This is the baby gorilla. He seemed so bored.
This is the adult male. This isn't a great photo, but he just rolled around on the hard cement. No grass!
The best part of the zoo was the dolphin show. It wasn't air conditioned in the pool area, but it was out of the sun. Here's a sweaty Lily and Papa. I was calling and waving to Lily, trying to get her to look my way when the man behind began waving and yelling "hi"!. Lily spotted HIM and waved! I turned around and looked at him - he was an older man and smiled sheepishly at me saying, "Hey, I look like a Grandpa!"
Stay tuned for photos from the dolphin show and more!
We had to get an early start. And Lily takes after her mother, who takes after HER MOTHER, who is not a morning person!
First stop - The University of Illinois (UIC) Chicago Hospital for a special blood test that my daughter needed to have done. (future post)
Papa and I waited with Lily outside at a park across the street from the hospital.
Papa helped Lily put on her "crocodiles" (what we call her shoes since she can't pronounce "cr" and calls them her "cocks"!)
This is Lily's beloved George. He goes everywhere with her.
Lily was awestruck with the sounds of the city. The elevated train tracks were half a block away, and trains came by frequently. Lily is used to the sounds of trains since they run through her home town, but they are a combination of freight trains AND Amtrak and they have whistles. These trains did NOT have whistles. That seemed to puzzle her. There was a lot of activity happening; buses and cars driving by; people walking down the sidewalk. Some people joined us where we were sitting and Lily was quick to yell out "HI!" and wave her tiny hand. An ambulance came rushing down the street with the sirens blasting, but Lily felt safe in Papa's arms. She is familiar with sirens because the fire department is not too far from her home. Lily says when she hears a siren that "they are going to help" and that "someone has an owie".
Soon Jessica was done and we headed off to our next stop - Brookfield Zoo.
The day was overcast when we had left home, but by the time we got to the zoo it was sunny. And hot. And humid. Temps got to in the 90's and the humidity was high. Yeah!
I was happy to see some of the animals in open areas with grass.
 |
| I don't know why he's so hot; he should be used to this weather! |
 |
| My FAVORITE animal at the zoo! |
 |
| Looking through thick glass |
 |
| Polar bear half in/half out of water; Lily and Jess in foreground. |
This grizzly bear had the right idea in the oppressive heat. His brother just looked on in the background.
Recent addition to the zoo were these injured pelicans who can no longer fly.
We saw the true meaning of Mother Goose! She had 16 babies!
I grew up going to Brookfield Zoo. I took my kids there when they were little. The last time I was there was probably 8 years ago. I was dismayed to see how rundown it seemed. Yet it cost $20.50 for admission that included three additional options - we chose the petting zoo, dolphin show, and the tram.
Some of the exhibits were closed, some were being remodeled, and some we were appalled at what the animals were kept in.
Take the baboons, for instance. I remember there being many, many baboons running up and down the fake rocks. There was a moat running along the bottom.
On this particular day, there were only 3 or 4 baboons. There was no moat.
And this baboon was chewing on plastic water bottles! I was really upset by this!
This one was playing will a long piece of red plastic.
We went into the monkey house and saw more fake rocks and fake trees.Where was the natural habitat? How about some grass? Trees? Leaves?
These gorillas had a very small space to live, again with just fake rocks and trees. It was so sad. This is the baby gorilla. He seemed so bored.
This is the adult male. This isn't a great photo, but he just rolled around on the hard cement. No grass!
The best part of the zoo was the dolphin show. It wasn't air conditioned in the pool area, but it was out of the sun. Here's a sweaty Lily and Papa. I was calling and waving to Lily, trying to get her to look my way when the man behind began waving and yelling "hi"!. Lily spotted HIM and waved! I turned around and looked at him - he was an older man and smiled sheepishly at me saying, "Hey, I look like a Grandpa!"
Stay tuned for photos from the dolphin show and more!
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