Tuesday, June 5, 2012

My Parental "Test"ament and PSA

It's the one year anniversary of what became my husband's and my greatest test as parents, to date.  I know parenting is nothing but a series of tests with variables:  tests of your patience, negotiating skills, time management, sanity, flexibility, organization...but never a test of your love or what you would/wouldn't do for your children.  That's the constant. The universe decided to test us on that constant last June with Sweet Pea.  From this experience, I gained insight in to what friends (and parents, in general) live with while caring for a child in need of constant medical care and hospitalization.  I also found my "PSA calling" as parent in making other parents aware of the uncommon medical situation we battled through for 2 weeks.  I look back on this experience now with the hindsight of how serious it could have become, and the overwhelming gratitude that Cleveland has one of the greatest medical systems in the world in The Cleveland Clinic.

On an otherwise innocuous Friday evening, Sweet Pea (4 1/2 yrs. old at this time) woke up from her nap with an unusual fever, accompanied by no other symptoms.  I kept her on the couch for the rest of the night and by morning she was better.  The weekend included record high temps, Farm and Garden Day at the local MetroPark, a family cook-out, lots of Slip-n-Sliding...perfectly fine through it all.   Even on Monday it was all good.  Then at 4:30 Tuesday morning, it began.  Sweets woke up vomiting.  In every case when she's had the stomach flu, it's been a quick hitter.  Less than 6 hours and usually doesn't get sick more than a handful of times.  But right away, I could tell this was different.  She was running a super high fever and getting sick on a fairly regular basis.  By Tuesday night, she was complaining of belly pain near her belly button and above her bladder.  I called the doctor first thing in the morning and got in right away.  I was thinking bladder infection, given where she was complaining of her pain.  We didn't see our regular pediatrician, but I love every doc in our practice, so it wasn't a biggie. I watched him give her a complete abdominal exam, during which she only flinched when he pressed on her belly button.  He, too, thought she had a bladder infection and gave her a quick urine test, which came back negative. So, with that ruled out, the next conclusion was a bad case of stomach flu, which was making the late-season rounds in Ctown area at that time. We went home with orders of rest, fluids and rice/toast/applesauce.

But by Wednesday evening, she was unable to get up off the couch and was curled in the fetal position from belly pain.  Off we went on our first trip to the Pediatric ER at Hillcrest Hospital, with the thought of appendicitis in the forefront of my mind.  (Eastside Cleveland friends, if you have children and are in need of an ER visit, I HIGHLY recomment-if possible-to get to Hillcrest).  They immediately started her on an IV because she was dehydrated.  She literally wasn't able to keep anything down the entire day.  They ran the gamut of blood tests as well.  She had an elevated level of white blood cells.  But again, after being examined by the pediatrician in the ER, he also thought she was at the beginnings of a UTI or possible kidney infection because she was complaining of primary belly pain in the center of her abdomen. They gave her IV antibiotic and improved after the IV.  As the doctor went over his diagnosis with us, he did mention that he could not rule out appendicitis because the only way to do that was with a CT scan.  Since she was not presenting as "classic appendicitis", he couldn't order the scan because it's a test they don't run on children unless it's absolutely necessary. We were released around 4:00 am. She was quite chipper on the drive home for what she had just been through the past 48 hours.  That, however, changed very quickly.  J and I were awoken by a wretched sound.  I will spare you the details, but what was coming out of Sweet Pea wasn't pretty and it was very green.  From 6:00 am Thursday, it was a quick downward spiral.  We fought horrible vomiting and relentless diarrhea. It was so bad, that she was going while she was sleeping and not even waking up.

 By Friday morning, I knew it wasn't the simple stomach flu or a UTI/kidney infection.  I called our doctor's office back first thing.  I spoke to our pediatrician this time and explained the situation to her through gasps and tears of fear and frustration.  She ordered a stool sample test for e.coli, salmonella and a few other doozies.  Remember at the beginning, when we had attended a Farm and Garden Day at our local MetroParks?  Well, even though we ALL thoroughly washed our hands after petting the animals, I was beginning to think that maybe, JUST MAYBE, Sweets had picked up something REALLY nasty from the farm animals. I got the stool sample to the hospital lab on Friday afternoon and unfortunately, likely wouldn't be processed until Saturday. And unbeknownst to me, the tests for all these disgusting micro-organisms take a MINIMUM of two days.  So we were looking at results coming in at the earliest by Monday.  Sweets suffered through Friday sleeping almost the entire day.  The vomiting had stopped, mostly because she couldn't keep anything down.  But the diarrhea was awful.  In full disclosure under my "this is my parental PSA", it looked like spinach and smelled like something had died.  It was really like nothing I had every seen before.

J and I were on shifts taking care of Sweet Pea while the other kept, a then 2 yr. old, Monkey Man entertained.  He really had no concept of how sick his sister was and was having hard time understanding why she couldn't play with him.  By Saturday, we both thought she was started to "perk up". She was trying to eat, but it still wasn't staying down.  The poor kid didn't even want a popsicle :(  She was staying awake a little more and talking to us.  The terrible thing is, J and I had been with her for all these days and hoping for any sign of getting better that we both over-exaggerated in our minds her slight "improvements" on Saturday.  It wasn't until my mom came over on Sunday morning to see her that I realized it really wasn't getting better.  My mom had last seen Sweet Pea on Friday afternoon.  When she walked into the living room and bust into tears at the sight of Sweets lying on the couch, I knew it really wasn't as good as we were making it out to be.  Cue Pediatric ER visit #2....

The ER visit showed extremely elevated levels of white blood cells and extreme dehydration.  They started her on an IV immediately.  The head of the pediatric ER happened to working that night and was Sweet Pea's doc.  He knew immediately there was a serious infection going on. His exact words to me were, "It's serious if a kid doesn't want a popsicle." Every time he offered one, Laynie refused.  Two of the four stool tests had come back by Sunday and they were both negative.  And that began the agonizing process of ruling things OUT.  We spent the night in the ER and were admitted to the pediatric floor in the morning.  The head of pediatrics at Hillcrest was managing her case.  He literally eliminated every possibility for what could be going on with the way her symptoms were presenting.  She was even tested for PARASITES!! Ick.  When the final blood tests for major organ function came back that night around 8:00 and they were all normal, she had officially stumped the head of pediatrics.  He called in a surgery consult.  The surgeon came up and gave her another round of abdominal exams.  Guess what he thought? Extreme gastroenteritis. Yep.  That's the fancy name for stomach flu.  He was almost convinced, except for the signs of infection that she was exhibiting.  So FINALLY the CT scan was ordered and completed around 10:30 pm.  By 11:20 the surgeon was back and was completely baffled by what they had found....

Our darling, adorable, fun-loving, smart, funny, sweet and too-big-for-her-britches Sweet Pea was full of infection garbage in her belly from a lacerated and slow leaking appendix.  FINALLY! AN ANSWER! I waited patiently as he explained that the infection formed an abscess right on top of her bladder and it had been leaking the entire time.  I kept waiting for him to say, "Ok, let's get her down to surgery and get this thing out."  But he didn't.  That's not how they do it anymore.  With children so young, they treat the infection first and go back for the appendectomy later.  In Sweet's case, though, they needed to drain the abscess.  We initially thought  this could be done at Hillcrest, but found out early on Tuesday that we would be heading down to The Cleveland Clinic Main Campus and Children's Hospital.  So very late Monday night, Sweet Pea got her first dose of antibiotic to target the abscess and infected appendix.  By Tuesday late morning, she was a completely different kid.  She was smiling, laughing and even asking to EAT!  Unfortunately, we couldn't give her anything, as we were waiting to head downtown for the minor surgical procedure to drain the abscess.
Sweets in her first full
day at
The Clinic.
Always a Princess
 I cannot begin to accurately express the love, gratitude and utter adoration I have for the pediatric team that got my Sweet Pea well again.  The radiology team that performed her abscess procedure and installed the JP drain was incredible. If her anesthesiologist were a general pediatrician, I would send Sweets to her in a heartbeat. And we were lucky enough to have her on the team which performed her appendectomy as well. And she remembered Sweets even though the appendectomy was almost 3 months later :)  Her surgeon, Dr. Oliver Soldes, was kind, caring and very articulate.  Dr. Johanna Goldfarb, Head of Infectious Diseases, was Sweet Pea's case manager for her infection.  What an extremely kind, humble, helpful and compassionate doctor she is.  The entire nursing staff on her floor was incredible.  I was NEVER worried about the people who were helping heal my precious girl. Our predicted 11-14 day stay at Children's Hospital ended up being only 6 days due to Sweet Pea's incredible recovery.  I was being prepped on coming home with a JP drain and a port to administer IV antibiotics. Instead, we came home ahead of schedule, drain-free and on oral antibiotics. Dr. Goldfarb confided to me one day, after it was apparent that Sweets was on her way to a full recovery, that children who come to the Clinic in Sweet's condition are almost always admitted to the ICU.  The fact that she was in such "good" shape and so strong was a testament to her immune system.  I asked her if she thought because I nursed her played a part in her strong immune system. She replied that it most definitely did. (I include this tidbit of info not to make non-nursing moms feel bad but to remind myself that the HELL I endured nursing Sweet Pea in the first 2 weeks of her life was worth every agony I suffered - including an ER visit for severe mastitis.  And if you're expecting and considering nursing, IT'S TOUGH, but don't give up!).  My hubby got the best Father's Day gift that year...a discharge from the hospital for Sweet Pea.
Does this look like the face
of someone who's going
home?

Very early on, we were informed of the uniqueness of appendicitis in children Sweet Pea's age and difficulty in accurately diagnosing it early on.  The surgeon with whom we spoke at Hillcrest told us in his 17 years of pediatric surgery he has had one case in which he caught an appendix before it caused a major infection in a child of this age.  Pre-School and early School-Age children who suffered appendicitis don't present in the "traditional" way most people think of appendicitis:  unbearable right side belly pain.  And it very rarely bursts. Instead, it's a slow leak. If you have children around this age, keep this experience in the back of your mind.  My key phrase is "if it looks like spinach, get yourself in it - the ER, that is."

In all of life's pre-Mom "tests", I've been the panicker, the blubber-er, the worrier.  The title of "Mom" did something to me. It gave me strength.  It gave me perspective.  It gave me courage.  When the little life you created looks to you in times of need, you need all of those things.  During the entire experience, I had one moment of weakness. One time I let it all out.  While the nurses were trying to get some blood from Sweet Pea during the disease elimination process and she's was crying, exhausted and hysterical - I just couldn't take it. Thankfully, J was there to sit with her while I excused myself to the hallway and let the flood gates open.  I got it out and carried on.  That moment taught me all I need to know about my strength.  I will never doubt it.



Bio-hazard clean up?
Nah.
Just preppin' for an appendectomy.
But I saved the suit for
the next time we paint in the house :)

Post-appendectomy, August 2011




2 comments:

  1. I remember this like it was yesterday. She was such a trooper but you were my hero through it all. Tough stuff takes a tough parent. Even after 3 kids, one almost 17, I look harder and closer because of your struggle and the insight you gave. Thanks for sharing.

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  2. I knew I had an army of prayers coming our way...most of them coming from the Collins house :) And I will never forget the thoughtful and completely indispensable 'Bucks love you sent my way! We are only as strong as the love we have surrounding us. I know you've always got my back, and I've got yours :)

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