Friday, July 31, 2009

Dr. Ooops!

Lucas’ abdomen X-ray on Tuesday showed that his stomach is upside down. Yes, I said upside down, as in 180 degrees, flip-flopped, doing a hand stand. The mystery of why he has daily stomach aches and gagging with eating, is starting to come into the light.

This morning we will drive to Cottage Hospital in Santa Barbara for an Upper GI Test. It should be painless and should offer some valuable information as to how his stomach is working, or I should say, not working.

I pulled myself from bed at 5:30 this morning to get the coffee IV started. My first thought was of food, food, food! It is a sure sign that I am feeling stressed over this day. I think it is because the tiny, sharp darts of past memories (see previous blog) might poke and pierce me this morning. Knowing that I have to put on my strong face, makes me sad. When Lucas was a baby, I could cry all the way to the hospital. Now that he is 12 years old, the guise of “everything will be fine” is my mask. If I have to cry, I will wait until I get home and sneak to the back yard and let the tears flow. This emotional plan seemed to work fine on Tuesday.

Deep in my soul, I don’t feel like I can complain. When I remember anticipating intense cardiac testing, and the news that surgery,after surgery was upon us, I think, “this is nothing, what’s a little stomach film?” The worst that will happen today is that Lucas might gag during the test, and I will hate to watch that. Especially, when I know he will have an audience watching him in the room.

In our house, when I “think” life is getting "tough" or "throwing us a fast ball", I remember 1997 and say out loud, “ Well, it’s not open heart surgery”. It is an excellent perspective from wherever I am mentally standing. Problems shrink with these 6 simple words! You should try it! It recalibrates me, and pulls me through, knowing this little guy has jumped over greater physical hurdles. This should be a cakewalk.

POST UPPER GI TEST

Don’t you think if a doctor is going to tell you that your son’s stomach is “upside down” that he better be darn well sure it is? This is not a hang nail, people, it is a seriously weighted diagnosis, don’t you agree? On Tuesday, Dr. "Oops" showed us on the X-ray how the stomach had moved to this upside down position. He pointed out body parts and everything! He was so sure of his 8-years-of-medical-school-self. Of course, I believed him. I was starting to worry.

He was wrong. A lot wrong. So the good news is that the Upper GI showed everything to be normal, a slightly tilted, smaller than usual tummy, but a normal one. Lucas did great throughout the test and it went much quicker than we expected. No tiny sharp darts! (See blog :Tiny Sharp Darts). The bad news is that we must do further testing to see why the symptoms are present. Next week, Lucas and I will trek back up to SB (the drive is quite beautiful, especially when compared going south on the 101) for an endoscopy. The old "camera down the esophogus" trick. It is a small test he will endure. I think he will do fine....after all, “it’s not open heart surgery”.

Thursday, July 30, 2009

What a Coincidence!

“Coincidences are God’s way of remaining anonymous”

Sometimes in life things come together in the most magnificent way. Some of my personal situations have played out, and I just can’t believe that it was good luck or a co-wink-ee-dink, as my sister calls them. I am not positive, but I think someone really is watching over me, but he or she doesn’t want the credit. This Rescuer swoops down, and helps me with the guise of luck. Let me share with you one of those times.

It was December 2007. My family and two other families were on our Winter Vacation in Bass Lake. It was four days after Christmas and we were ready for some snow, sledding, and ice skating. We were there less than 18 hours when we got The Call (this is a whole different story I will save for another time) that our house had caught on fire at 2:30 AM that morning. By 9:00 AM we had packed up our Tahoe, and sadly drove the six hours back home. Our Winter Vacation melted right before our eyes.

I need to condense this long story as this is a blog, and not an epic novel, and I am here today to share only my coincidence. As you could imagine, we could not live in our home; the wiring in the attic had melted, we had huge holes in our roof, and the house reeked of smoke. It was ugly and depressing to see my family’s nest like this. Thankfully, we were all packed from our vacation and hoping to move into my parents home a few miles away. They graciously took us in without hesitation. But this was only a temporary fix because, two little boys, a set of stressed-out parents and two daschunds over a long period of time would have sent my dear old parents to the Nut House. Or me.

It was determined that it would be months before we could go home. Our insurance company agreed to pay for us to rent a home while ours was fixed. It sounds so easy, doesn’t it? I called a dozen places. Most homes required a lease; all of them did not want dogs. Well, one would take dogs, but they wanted a short lease and the house was a Dump. We considered the Dump, but then shifted to Plan B. Gently; I asked my parents if they would be willing to take care of our doggies for, say, at least 6 months? I think they must have felt really bad for us because they agreed after little cajoling. My kids were broken-hearted at the thought of not having our pups with us. Saddened, we pushed forward, looking for a rental house that did not require a lease.

I looked in the newspaper and drove around town. Handling all the leg work and phone calls of house searching, I felt a big sense of urgency. I found a few houses that had potential for our situation. With each owner I explained our story, and why we could not sign up with a year lease. I was playing all the cards in my hand, as we were going on 10 days living with my parents. I was getting frustrated with each call. I found the perfect house in the paper. I drove by and checked it out. It was in the development next to ours and only a couple years old. I had many dear friends who lived in the neighborhood and, drum roll please…… it was located right next to the most beautiful park! This park had a basketball court, mini-water park and fabulous landscape with winding pathways that any skateboard or bike would love to cruise. I imagined how we could live there and go to our Burnt House (my boys named it that) everyday to get the mail and watch our real home be rebuilt. However, the kind Asian gentleman wanted a lease. He would consider a 6 month lease. We had nothing to lose and I made an appointment for my husband and I to meet with him without our kids.

Walking up the drive way to our Sunday morning appointment I was a little nervous. The owner was showing the house to other folks that day, but I really wanted to live there! I wanted him to see we were a nice family, just in a bad situation, and we really needed a break. I did not even mention our beloved doggies, which would have been an instant deal-breaker.

My husband Ralph and I stood on the porch and rang the doorbell. The door opened and I saw a small, business like, Asian fella, with his shoes off, and a gentle smile on his face. My husband saw his boss! Yes, his boss owned this home! It was remarkable that the two dots were never connected. Besides we live in a big town, who would have guessed this could even be possible? Believe or not, my husband had left a message on his boss’s answering machine saying he would not be at work for a while, as we had a house fire. However, his boss had been on vacation and never received it.

What a much needed coincidence for our family. The Landlord Boss trusted my husband immensely, and this worked in our favor We mentioned our 2 doggies and The Landlord Boss said they would be welcome to live there ! The Landlord Boss gave us a very loose lease that we could wiggle out of without penalty. This was an unbelievable answer to my prayer, and I had to thank God, even though I think he wanted to stay anonymous. The six of us moved in a few days later and lived there for 9 memorable months. I just can not believe that was a co-ink-ee-dink or good luck.

Wednesday, July 29, 2009

Tiny Sharp Darts

Yesterday was our first time to visit this Pediatric Gastro Intestinal (GI) doctor in Santa Barbara . He had a very clean, updated office that he shared with other kid doctors. The left side was for pediatric oncology patients and the right side GI. I was thankful to be visiting the right side. Going to a place like this is depressing to me. It floods some bad memories of when my son was critcally ill. I try to ignore, supress and forget them. But when I re-enter this medical world they come flying at me like tiny, sharp darts and I am weak. I am forced to recall the unsettling reality of how unfair life can be.

When Lucas was on the verge of getting a tracheotomy and eventually a home ventilator my friend Pat visited us at UCLA. She happened to be there at the time I was "invited" to go see the 18 month old four beds down that was living on a home ventilator. While Pat Stayed near Lucas' bed, I walked down to meet this little dark haired beauty. She was lying there connected to this big, loud machine that was pluggged into her neck. It looked abnormal and ugly. I stared, trying to crack a fake smile to hide my shock. I raged inside thinking that it was okay for her to live this way, but not my child! I shlumped my way back to Pat and melted into the chair next to her. I put my head on her shoulder and started to cry. Slow tears of sadness and anger. All I could bring myself to say was "It isn't fair, it just isn't fair". Pat quietly agreed and told me something that has stuck with me. "Fare is what you pay to get on the bus."

Those were unpleasant words to hear, but ones that I needed to start ingesting. Yes, it is unfair that my 6 month old son was ventilator bound after two open heart surgeries. I was about to go through it whether I embraced it or not. That day I started aborbing the fact that "fair" doesn't exist in this world. Some children have heavy medical loads to carry on their small backs and others are untouched. That was the tiny, sharp, dart that piereced me while I sat in the waiting room.

Tuesday, July 28, 2009

Tummy Trouble

Twelve years have passed since my son has undergone multiple surgeries, including two open heart surgeries. He also had a G-tube until he was three years old. We literally lived at UCLA the first year of his life back in 1997. It was not fun for any of us, especially him. Thankfully, he has no memory of the hospitalizations. I have not forgotten the torturous first-time-mommy experience. Well, I try to. I think that is maybe why I like wine so much. I know I have to deal with the bad memories. Thakfully with time, the anxiety, fears, and sadness have shrunk in size.

Today I am taking him to another city to a pediatric Gastro Intestinal doctor. Eating was never normal for him. Having food pumped into your stomach while you are asleep on a ventilator is so far from normalcy. Even after he weaned off the ventilator, he was so against having anything put in his mouth, including food. He was conditioned to know that things like tubes and, tracheotomy suctioning, come with discomfort and pain. He refused to let anything close to his sweet baby lips. Did you know that eating is a learned behavior? It is not something we all know how to do automatically as babies. So my son let's just say Lucas was slow in learning to eat and enjoy food. Which is ironic because I am Italian and, well, you know how we are with food (and wine). Italian babies are conditioned at an early age to believe that "food is love". His lack of desire to eat frustrated me, saddened my mother, and insulted my grandmother, who lived to feed the world.

We had therapists come into our home to help us in teaching him to eat and swallow. Lucas would turn his head, spit food out ,and start to cry. We tried to get him to play with his food. I would put a big plastic bag down on the floor of the kitchen, and we would take out all different kinds of yummy foods. The session would end with whipped topping in his hair, jelly on his nose and syrup on his toes. Toys would be incorporated, so we could get some serious playing with food done. The idea was that he would interact with the food, and have come to enjoy it. To desire it. In the process, we would try and encourage him to bring it to his mouth. See how "fun" food can be? I am not sure of it worked, but it was an experience I won’t forget.

I would try and feed him in front of Barney videos. I would attempt sneaking in baby food that had been "pumped" up with calories, and slip a bite in his mouth when he wasn’t looking. I would try and trick him into eating. It did not feel right. However, if we were ever going to get the feeding tube out, he had to be able to support his little body. I pressed on.

He finally did get the G-tube removed after 3 grueling years of eating practice. I don’t like to complain about the eating issue because this little boy is alive and thriving today. Eating really was the least of his problems that first year of life.

Fast forward 12 years...we are going to the G.I. doctor today because he is having symptoms. We will get through it. Please pass the wine.

Monday, July 27, 2009

I blog, Therefore, I am.


I am trying to understand why people blog. The obsession to write about one’s thoughts and to then to think that the world, or even one single person will care, feels, well, self-centered to me. Why not just keep a private journal? Why go public? I mentioned my blog idea to my sister and she asked, “what for?” I asked myself the same question, “Why blog?” My girlfriend blogs daily, about her life, personal thoughts, and family. She is part of the answer to that question. Apparently blogging is a positive thing. She is hooked on blogging, making it a personal goal to write everyday. I admire her for that commitment.

So I ask myself, who really cares what I think, “Why blog?”. Maybe my mother will read it? Aren’t mothers supposed to care? Maybe my In-laws in Kentucky will read it? They could gain a window into our life in California. They are so far away, and a blog might give some details of their son and grandsons.

After contemplating, “Why blog?” the answer for me is this. I will blog to get me in the groove of writing. Anyone who really, really knows me knows that I wish to write. Years ago, when I shared my desire to write with a friend they told me that “a writer is someone who writes, therefore you are a writer”. I wish. I have oodles of subject ideas based on life experience that are unique, funny and entertaining. A child with heart problems, an eating disorder and a house fire are unlikely events that I have survived. They changed me, they changed my life.
The discipline of putting my thoughts on paper has been the biggest challenge for me. Maybe I am lazy? More likely, I fear there is little worth in my words. I know, I know low self-esteem. Welcome to my human side. But, maybe I am wrong. How else will I find out the truth if I don’t start putting pen to paper, or fingers to key board? I want to start believing in myself more and this is my itty-bitty step into my personal goals. This is my baby blog. This is my start. Stay tuned, Mom.