The Mask

posted by Momo Fali on January 21, 2009

If all goes as planned, tomorrow morning at 6:00 AM my husband and I will be arriving at the hospital with our six year old son for surgery.

This is not major surgery. It is as minor as minor can be. The ENT could probably do this tube surgery with his hands tied behind his back.

But, there is enough risk to my son that they changed the location from an outpatient surgery center, to a main hospital. Plus, it requires general anesthesia and that always makes me nervous. But, more than anything…there’s The Mask.

My boy has developed an extreme dislike for The Mask they use to put him to sleep. He’s terrified of it, because he knows it all too well. This will be his ninth time on an operating table, and sixth time under general anesthesia.

Two years ago, when he was in preschool, a group of firefighters visited his class and when one of them demonstrated a breathing apparatus, my son had a complete meltdown just hearing him breathe through it. He’s that scared.

He doesn’t comprehend the fact that this surgery is no big deal. He’s certainly been through worse. He doesn’t remember having a catheter inserted into his thigh that traveled all the way up to his tiny heart. He doesn’t realize that he stopped breathing in recovery after his tonsils were removed. Or, that he had to stay in the ICU for that surgery because, for him, it was a risky operation. He doesn’t know there were times we didn’t know if he was going to live.

His only concern is The Mask.

Personally, I’m looking forward to this surgery. His hearing loss is so bad that it’s like we’ve been living with a 90 year old. Everyone walks around yelling all the time, and even with our voices raised he still says, “What?” about 50 times a day. We can even see that he’s starting to read our lips, as if to say, “I’m done trying to listen to you people. I’ll just watch you talk.”

With the exception of the moment when they wheel my son down the hall to the operating room, tomorrow will be a good day. He’ll have a lot less pressure in his ears and his hearing should be better instantly.

Unfortunately for my son, the anesthesiologist won’t let me drive him around in a car until he falls asleep in the back seat, or rock him into a deep slumber. The Mask is unavoidable. And that stupid, little piece of rubber? Well, it breaks this Mommy’s heart.

The Eyes Have It

posted by Momo Fali on January 18, 2009

Look at what my husband found, in the far reaches of a cabinet while searching to see if we had any more cans of coffee. The cabinet goes so far back that it ends up behind our dishwasher. That’s my excuse anyway.

He didn’t find any coffee. Not that either one of us could think about drinking, or eating, anything after seeing this.


I found it particularly interesting that the forgotten potatoes look healthier than my spider plant.

Uh, That’s Not a Bug

posted by Momo Fali on January 15, 2009

My son is currently on his fourth round of antibiotics since September. He has chronic sinus infections, and this latest one has been dragging on for about a month.

As most of you know, antibiotics kill bacteria. Lots of bacteria. Even the good stuff. This is why people who take antibiotics often get what my Dad refers to as a case of the thin dirties.

To combat diarrhea, I give my son some very pricey probiotics. I break open a capsule and pour 5 billion CFU’s of powdery acidophilus and rahmnosus goodness into some applesauce, and it easily goes down the hatch.

For those of you who don’t speak nature, acidophilus and rahmnosus are live cultures that help to restore balance to the intestines. They are good bacteria, and ingesting them allows my son to walk around with regular underwear on, instead of plastic pants.

This morning, I was opening a capsule when he asked me what it was. I told him that his antibiotic is killing the bad bugs and the good ones, and the probiotics put the good bugs back in.

A little while later, I heard him coughing in another room. After he stopped hacking, he came in and told me he didn’t need the antibiotic anymore.

I said, “Yes, you do. You’re not better yet.”

He insisted, “No, I don’t need it!” Then he opened a tissue, showed me a chunk of something green and said, “See? I can spit the bad bugs out.”

Perspective

posted by Momo Fali on January 13, 2009

The way I look at the world has changed. It’s not because I’m getting older and it’s, for sure, not because I’m getting any wiser. It’s because I am the parent of a child who doesn’t fit the mold.

My son is not typical. He is not autistic, he doesn’t have Downs, there is no disease, disorder, or diagnosis of any kind. On one hand, that’s something for which I am happy. On the other hand, it can sometimes be frustrating.

The geneticists were sure there would be some way to classify him, but after extensive testing they came up with nothing. He is an enigma.

His expressive speech is that of a three year old, yet his teacher says he’s gifted. He is still in need of therapy, but our county agency doesn’t want to pay for it anymore because his I.Q. is too high.

He has a hearing loss, but it’s not something a hearing aid can help. He loves music, but can not sing you a song. He can read a book, but can’t tell you what it was about after he closes the cover. Yet, he can take a computer test on that book the next day and get every question right. So far this school year, he has taken 103 such tests.

His defective heart is stable enough that he can ride roller coasters and play sports, but an anesthesiologist at an outpatient surgery center won’t touch him because he’s a “heart kid”. Something as simple as ear tubes requires a trip to the hospital. A tonsillectomy meant an overnight stay in the ICU.

He’ll be seven in May, and as of Sunday he weighed 37 pounds. He can ride a bike, but can barely reach the pedals.

His is different. He is special. And, you know what? It’s all in how you look at things. My kid’s clock may turn counter-clockwise, but he still knows what time it is.