A Guide to Surviving Your Child's Surgery

There is no doubt nothing more disconcerting and more frightening than watching your child being taken off to surgery.

It is a feeling of utter helplessness.  You are trusting the life of a human being you love more than your own breath to other people. And anything could happen.

Of course they try to be positive.  "Oh, the surgeon has done many, many of these surgeries," or "Don't worry, everything will be fine."

By the same token, you are presented with tons of forms asserting the risks of the procedure your child is about to have.  They tell you not to worry, then hand you a piece of paper that says the anesthesia could kill them.  Of the medications they are given.  Or just about anything.

My first experience with this was the morning after Mishayla was born.  That night, they inserted the feeding tube in Mishayla's side, the most important surgery for her, because with a closed esophagus, this was the only way Mishayla was going to gain any nourishment.  This was done right after Tony left the conference room, meeting with all the many specialists that would participate in this massive endeavor to repair my daughter's anomalies.  I was not there yet, since I was yet to be released from the hospital where I gave birth.

But the next morning, after my release, the doctors were going to attempt to connect Mishayla's esophagus.  The surgeons tried to be positive, but the nurses in the NICU were less so.  One told us that what one of the other doctors had told us; that there may not be enough tissue to even connect the esophagus.  They may have to wait till she was bigger, when there was more tissue available to connect.

One nurse told us, point blank, not to get our hopes up.

Was this wrong of her to do? I guess it depends on how you look at it.  If you're a glass half full person, you could say it was wrong, that hope would have been more appropriate.  If you're a glass half empty, you could say she was right for her not to dash our hopes with such a negative prognosis.

I tend to agree with the former.  I think being positive to start would have been better; to say, "they are going to try this, and let's hope it works," and leave it at that.  To tell a parent "not to get their hopes up" regarding their child, is cruel.  And it's impossible.  Because no loving parent is going to believe, in their heart, that bad things are going to happen to their child.  Call it a survival mechanism, if you will.  In order for us to survive, we must believe the best when it comes to our children.

But in the medical community, this doesn't seem to be the prevailing notion.  Especially when it comes to a child with a disability.  We encountered this negativity again and again.

But on this day, we kissed our newborn daughter goodbye, and watching the team of nurses and doctors and surgeons wheel her off to the operating room.

The minute you can no longer see your child, you are left with a horrendous sense of loss.  Like someone had cut off one of your appendages.

Me; I spent about a half hour heaving in the women's room.  Heaving and heaving, with nothing coming out.

After that, we had to find something to do.  A diversion, a distraction.  If that was at all possible.

Food is one diversion.  I know, pretty gross after all that puking.  But suddenly, I was starving.  We ventured down to the UCLA cafeteria.

Filled with every type of culinary treat, the UCLA cafeteria has it all.  For a hospital cafeteria, health food was not the focus.  It had a pasta bar, a pizza bar, a deli, hot food like fried chicken and other meats, you name it.  And the desserts: wow; cakes, cookies, pies.  And junk food galore; chips, nuts, pretzels.  All you can eat.

And yes, there were a few token fruits, and yogurts and things that were healthy.  And a pretty nice salad bar too.

But you can't drown your worries in lettuce and tomato and vinaigrette dressing.  At least I can't.

So we did a fair amount of eating.  My personal favorite is always deli sandwiches.  Turkey and Ham piled high on a roll would always be my personal comfort food of choice.

As time progressed, and Mishayla has more surgeries, we spent a lot of time in hospital cafeterias.  We often joked that we should write a guide to the best hospital cafeterias in the city of Los Angeles.

Here is list of the best and the worst:

1. As I said, UCLA is the best, for its size and variety.   Nice patio, too, for outdoor dining.

2. The next best would be Cedar Sinai.  Quite a bit smaller than UCLA, but the highlight of this one is their mexican bar.  Great quesadillas.  We spent a lot of time there when Mishayla had her heart surgery at 10 months old.  Since she had complications, we were there two weeks instead of the five days we had initially anticipated.

3.  Northridge Hospital is next.  Small cafeteria, not much.  Some good soup.  We spent most of our time there at a local Jack-in-A-Box restaurant.  Also had a horrendously terrible meal at a local Sizzler restaurant.  And I mean terrible.

4. And finally there is Antelope Valley Hospital.  I don't know about now, but when Mishayla was born in the late 90's, all they had was vending machines.

So there ya have it; the best and the worst of hospital cafeteria cuisine.  I'm sure there are hospitals with better food, or worse food, but those are the only hospitals I know.  Thank goodness for that!! I don't want to know anymore.

Also, a word to former smokers; if your child has surgery, you may feel the urge to light up.  I know I did.  I hadn't smoked since right before I got pregnant with Mishayla.  And I wanted that cigarette; badly.

But then I thought...how stupid.  Will smoking make my daughter better? Nope,  not at all.  All it will do is make me stinky with cigarette smoke, and give me those horrible bouts of bronchitis again.  So I was strong, and did not partake.

Talking to God is also helpful.  Depending on your beliefs, and your needs, this could bring you solace. My conversation with God some would probably not approve of.  They were often along the lines of "why, me, why my kid, why us?"

Then the old Catholic guilt would set in; I would ask God, "Okay, what did I do to deserve this? Why was I being punished?  Was I too promiscuous in high school? Was it that candy bar I shoplifted when I was 13? Because I got divorced? Filed bankruptcy? What? What could I have done that was so bad to deserve such an ill child? And why didn't God punish me?  Why punish my innocent child?

I realized I was beginning to sound like that minister at the hospital that told me this was because of my sins.  Ridiculous.  I was essentially searching for an answer where there was no answer.

So I said forget it.  The only thing I did ask God was to save my child.  Yes, I know I wasn't the greatest believer.  Please, I asked, save her anyway.

I hope if your child has surgeries, you have lots of family and friends to be there for you.  My husband and I did not.  Since our families didn't live in the Los Angeles area, it was not easy for them to come. Eventually, Tony's mother and sister came, and my parents as well, but the days of the surgeries, it was just Tony and I.  

I know people are busy, and I'm not saying they don't care.  But don't be surprised if some people you call your friends don't show up at the hospital.  I think people have a real hard time facing a parent going through this.  They say stupid things like "I don't know what to say." I will elaborate on my thoughts about this in another posting.

But we got through it all.  As afraid as I was, I summoned the courage to walk out of the hospital during the surgery.  When a child has a surgery that lasts for many hours, getting out of the hospital is a essential to keep your morale up. We walked the streets of Westwood Village, looking in the shop windows.  We went in the stores.  You get into the rhythm of the world, and it gives you a sense that life has gone on, and not everything has changed, and that there are things you can count on.  The summer sun came up, people are going to work and going to school, the cars and the buses are running up and down the streets.  It provides a sense of comfort that some things don't change, even though you know your world will never be the same.

And maybe God, or the higher power, or whoever is up there, does listen, because a miracle did happen.  When we saw the surgeon, he told us he was able to connect Mishayla's esophagus.  There was just enough tissues to repair it.  And that she had done amazingly well.

Of course, I'm sure I missed a few things in my survival guide.  I'm sure other parents who have gone through this will tell you other things to do while waiting for a child to have surgery.  But one thing I think every parent who has been through this will tell you.

Never, ever, ever, give up hope. And don't let anyone take your hope away.  Just the fact that your child is here is a miracle, and with that, everything is possible.