Home > Uncategorized > Life is a Shipwreck

Life is a Shipwreck

My mind has been AWOL lately, and it all came crashing down on me this week.  As I’ve mentioned, my daughter has been sick.  The short version:  At the beginning of September, she got what seemed to be a typical stomach virus, except she failed to recover.  She started vomiting every single piece of food she ate.  After several visits to the family doctor, some blood work and experimentation with food restrictions, we were referred to a specialist.  We’ve been working with a pediatric GI specialist since then.  We’ve done blood work, a CT scan, a gastric emptying study and, finally, a brain scan.  She’s been living on Gatorade and Ensure for two months…at least, until she starting throwing up Ensure and became so weak that she couldn’t even pick herself up off the floor after she was sick.

So, on Monday, her doctor decided to admit her to the hospital.  See, we knew that would happen.  We knew it was coming.  We have been trying desperately to get some nutrition into her and maintain her weight so we could (maybe) avoid it.  Nothing doing.  The doctor has known since our first visit what is wrong with her, but I’ve been steadily convinced that she’s wrong. (She’s not wrong).  It’s called gastroparesis, and if you are unfortunate enough to be familiar with the condition, then you have my sympathies, because it is a wretched beast.  Basically what has happened is that her stomach has stopped working.  The parts that push the food out of her stomach don’t work anymore.  So, she eats and the food just sits there.  This is apparently a not-uncommon complication from a certain kind of stomach virus bacteria.  Modern medicine doesn’t really understand it and they don’t really know how to treat it and they certainly can’t fix it.  Gastroparesis is, for many people, a chronic, lifetime illness and my heart hurts for them, because it’s just not fair to not be able to eat.  However, the doctors insist that my daughter’s is temporary and, with time, her stomach will heal, or “reset” and she will be perfectly fine.  How much time, you ask?  There’s the kicker.  No one knows.  It could be a week or it could be months.  I’m reasonably certain that it will be under a year, unless my kid is going to be the one the doctors use as the extreme example the next time they talk to distraught parents about this.

Anyway.  Right now we have to give her stomach complete and total rest to encourage healing.  Since good nutrition is fairly important to healing, and, you know, living in general, we had to go drastic.  She had an upper GI endoscopy to rule out any last-minute surprises, and to round out our complete collection of everydamnGItestthereis.  The doctors did find evidence of bacterial infection and decided to give her a ND feeding tube.  I’ll spare you the details, but the tube bypasses her stomach, so the Ensure is routed directly to her small intestine.  This way, she gets her nutrition and her stomach gets to rest.  And she gets to have the experience of snorting a plastic tube up her nose, then swallowing it.  Dear Lord.  Anyway, we did it, cause you have to do what you have to do, and she was sent home with dire warnings about not eating any food at all for at least three weeks, until our follow-up appointment.

Throughout this whole experience, I have learned a lot.  You know how it is.  The doctor throws out a couple of terms and you immediately hit up Google.  Google has not always been my friend, because it still insists that these symptoms could be caused by a brain tumor (ruled out!), but for the most part, knowledge is power.  Here I shall share with you some things I’ve learned on our journey thus far.  You may already know these things, but since I’ve never been to medical school, had a serious health issue, or spent a whole lot of time analyzing my digestion, unless I’ve eaten cabbage or mexican food, I found them to be interesting little tidbits.

  • “Hungry” doesn’t come from your stomach.  I have always assumed that when you feel hungry, it’s because your stomach is telling your brain that it’s empty.  Not so.  Hungry comes from further down the line.  If you dump food directly into your intestines, you will feel full.
  • Just because someone is a pediatric doctor, doesn’t mean he’s fit to be around children.  Or their mothers.  Our doctor in the hospital was not our regular doctor, he was another member of the “team.”  (We went to a teaching hospital, so we had a “team.”  More on that later.)  He was also a gigantic asshole who should go do research or hide in a basement or some other thing that prevents him from having contact with other people.  I asked a question and got a smart ass response.  It got heated.  In front of my kid.  Fortunately, she is old enough to have witnessed such things before and she KNOWS that her mama doesn’t take that shit from anyone.  Especially not when I’m sleep-deprived, stressed, worried and confused.  All I expect is civility and possibly a touch of kindness.  That’s not so much.
  • Teaching hospitals are actually kind of similar to Grey’s Anatomy.  Okay, well, probably not really, but I would not have been very shocked to find a couple of our doctors going at it in the on-call room.  Everyone seemed to be about fifteen years old and clueless.  We got several visits from doctors on our “team” every day and they routinely gave me bad information, looked confused and were unable to answer my questions.  News flash.  Everyone knows that “That is a very good question” is code for “OMG, I have no idea.”   I’m all for learning, but until they have learned enough to be more of a help than a hindrance, they need to stay away from me.
  • The hospital cafeteria offers a large coffee (Starbucks, even) for $2.02, as long as you have the mommy-access wristband.  However, if you show up from 11:30-11:45, it’s only $1.91.  Sweet.  I think the cafeteria cashier might be my new BFF, since we spent so much time together.
  • Nurses and volunteers are angels sent directly from heaven.  The incredible frustration and anger I experienced with our very bad team of doctors was tempered only by the unbelievable kindness of the nurses on our floor.  They were, without fail, kind, helpful and caring.  They answered my questions more completely than the doctors and stopped at nothing to get whatever we needed, whether it was a few minutes of privacy or a pencil to do crossword puzzles.  Volunteers showed up to do crafts, bring Halloween costumes, and deliver a bag of Halloween goodies (which included not one piece of candy for the kid who can’t eat.  I cannot tell you how that thoughtfulness touched me.  Especially since her doctor never even had the good sense to stop her meal service.)  I can’t imagine the heartache that comes from working with sick children every day and as far as I’m concerned, these wonderful people have a guaranteed spot in heaven.
  • Gatorade is considered a clear liquid.  Apple juice is not.  Weird, huh?
  • Despite what anyone might tell you, they will not sedate a child in order to insert a feeding tube.  It was a special kind of awful, but she muscled though.  It was interesting, though, because they really just get it in there, then wiggle it around until it gets where it’s supposed to be.  Skills, yo.  As an interesting side note, the radiologist who performed this feat looked remarkably like Arizona from Grey’s, except she did not have an amputated leg (that I know of).  No, there was no getting away from those comparisons in my mind.  My poor imagination had to go somewhere that wasn’t dark and twisty.  (there it is again.)
  • Despite our cat’s unfathomable love of straws and all things similar to straws, he does not attempt to tamper with a dangling feeding tube.  Not as stupid as he looks, that one.
  • Nutritional requirements of a thirteen year old girl come out to about eight cans of Ensure a day.  Regardless of how medically necessary it may be, Blue Cross/Blue Shield will tell you to suck it up and pay out-of-pocket.  Thanks, guys, that’s sooooo helpful.  At least I finally get to claim feeding a kid on my taxes next year.
  • Attitude is everything.  I have been struggling to stay positive through this whole thing, because it’s my job to keep my child’s spirits up.  That doesn’t come naturally to me.  I’m not sure how naturally it comes to her, but she’s been amazing.  Not once have I seen her cry, feel sorry for herself, or complain about how incredibly unfair life is.  (And, oh yes, it is.)  She has her ups and downs, naturally, but any kid who can laugh through this is going to be just fine in life.  She is growing into a remarkable young woman.

All this brings me to the odd title I’ve given this post.  In my search for inspiration, I discovered the following quote.  It’s my new mantra and it’s gotten me through some dark and scary moments.  And even though one hopes that all of our dark and scary moments are behind us, this is worth keeping in my brain.  Sing on, y’all.

via verybestquotes.com
Indeed.

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  1. November 2, 2012 at 9:01 am

    Holy crap. That NG tube SUCKS. I had one in for a bowel obstruction after the birth of my twins. Then I had another one 2 years later when the scar from that obstruction caused another one. Ended up with emergency surgery to remove some of my intestine. Both times I was the most depressed I have ever been. God, I am so sorry for your daughter. Sending her all the health my digestive system has left.

    • November 2, 2012 at 9:06 am

      It is definitely tough…I am so sorry that you had to go through it TWICE. I guess we never really appreciate our guts until they quit on us. Thank you for your kind thoughts. 🙂

  2. Barb Strimple
    November 2, 2012 at 9:13 am

    This is remarkable but more then that your little girl is a princess of remarkable! As tough as I feel I am, I know I couldn’t have gone through what she has and kept a smile on my face. She sure is growing into a queen n my eyes. Love her so much!!! Mom/Nana

    • November 2, 2012 at 9:18 am

      She’s a keeper, for sure. 😀

  3. November 2, 2012 at 3:47 pm

    God bless your family. I pray for healing and health sooner. And I hope your “doctors” read this post. Perhaps you could mail it to them??? And the nurses so they get the dose of love and appreciation they deserve. I would send it to the dean of the medical school, and the CEO of the hospital.

    • November 2, 2012 at 3:54 pm

      We have to go back for a doctor appointment in a few weeks…I have a sneaking suspicion that the nurses on the pediatric floor might just get a big old pile of freshly baked cookies. 🙂 As for the doctors…sigh. I’ve long ago lost hope of fixing the jerks of the world. Fortunately, we have a couple other good hospitals fairly close by, so I can avoid this one forever. Thank you for the prayers. At least we finally feel like she’s on the road to recovery, long though it may be.

      • November 2, 2012 at 4:26 pm

        I applaud your Mommy Protect Your Child Roar. And the jerks of the world may not stand a chance but they should still be made to hear what kind of grief they are already causing people who are suffering. They should first and foremost “cause no harm”. And I bet those nurses will LOVE you even more! I remember being told once if you really appreciate someone’s work don’t write them a letter, write their boss a letter. 🙂 AND MAKE COOKIES! I hope the road from here on out is filled with kindness, compassion and better moments every single day.

      • November 2, 2012 at 4:29 pm

        You have a valid point…I may need to reconsider my position. Not on the cookies, though. 😉

      • November 2, 2012 at 4:31 pm

        Oh no, not on the cookies!!!!! 🙂 (Sorry I wasn’t trying to persuade you, I was just sharing experiences.)

      • November 2, 2012 at 4:33 pm

        Oh, no, it’s cool. You’re totally right. They should be outed on their suckishness.

      • November 2, 2012 at 6:15 pm

        ROARRRRRRRRRRRRRRRRR! 🙂

  4. November 2, 2012 at 5:12 pm

    Wow. I’m so sorry that you, your family and especially your daughter are going through this. My 8 month old little boy has some tummy issues of his own and gastroparesis was thrown out as a possibility. The doctor doesn’t think it is likely, but like you I googled it immediately and was less than thrilled by what it had to say. Your post while not only cathartic for you, was very informational for me and I thank you. Sending lots of prayers and healing energy to your daughter. As a side note, why do so many doctors, especially pediatric doctors, have such terrible bedside manner? I’m glad that you have found fantastic nurses, a great cashier and Starbucks coffee to keep you going, though.

    • November 2, 2012 at 5:22 pm

      Oh, I will pray that your little guy has tummy issues that are easily and painlessly resolved. One of the only bright sides of this whole ordeal is that my daughter is 13 – old enough to understand her condition and participate in her care. I have had a long history of, uh, dislike, for most doctors. I did a lot of research to find our specialist and I was oh-so disappointed to get one of her stinky partners instead. I guess the good news is that we’re done with him and we can get back to our compassionate doctor for the remainder of the process. Thank you for the prayers. Just give me a shout if you ever need anything in regards to your son’s condition, even if just to vent. Thanks for reading and I am very gratified to have provide at least a little helpful info. 🙂

  5. November 3, 2012 at 9:26 pm

    Oh wow. My thoughts to your daughter and your family. I hope she has the best and fastest recovery!

    I hope you do give critical feedback to this “team” of doctors. Especially since this is supposed to be a teaching hospital. Hopefully they’ll take the input to heart before they go out on their own.

    • November 4, 2012 at 6:14 am

      Thank you for your kind thoughts. The more I think about it, the more convinced I am to provide some feedback. It may make no difference, but I should at least try. 🙂

  1. December 22, 2012 at 10:42 am

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