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I Couldn’t Make This Stuff Up If I Tried!

Posted Feb 11 2009 3:50pm

**This is a very long post.  For that I apologize; but, there was so much going on and so much I wanted to share with you, I decided to just put it all in here.  Keep in mind, I’m working on very little sleep so my writing might not be up to snuff. So grab your coffee, tea, or other beverage and enjoy.

Where do I begin?  I guess I’ll take Sister Maria’s advice and start at the very beginning… which is a very good place to start.

As you all know, Charlie has been having some problems the past week or two.  This past Thursday evening he walked into my mother’s living room (we were there for dinner) and announced to everyone he was dizzy, nauseous, and had a migraine.  He then sprawled out on the floor, where he stayed for the next hour until the nausea, dizziness, and headache passed.

Friday morning he was feeling fine, so I made the decision to send him to school.  I spoke with his teacher and we agreed she would keep a close eye on him and contact me if she felt he needed to be at home.

Several hours into the school day, Charlie’s teacher emailed with the news that he was complaining of being very sleepy and was nauseous.  She said she would keep her eye on him, that since he didn’t have a fever, and because he seemed to be okay at that time, he should stay.  I agreed.  He’s missed so many days this year.

By the time the school day was over, Charlie seemed fine.  He was a little quiet, but nothing to worry about.  We went to my mother’s for dinner… yes, AGAIN… truthfully, they feed us almost every night (thanks Mom and Rick!).  Charlie was fine and enjoyed himself.  He did come out to tell us he was “so, so tired,” which is not the norm -  he loves to be at Granny and D-daddy’s house.

Everything seemed fine and normal as we all went to bed that night.  Unfortunately, at 2 a.m. Charlie woke up whimpering and complaining that his neck was hurting (which is Charlese for nauseous).  Sure enough, he did throw up.  He had a fever of 105.8.  We were frantic.  Mike immediately called our insurance company to find out where they wanted us to go, they instructed us to go to the nearest hospital (which is not pediatrics, but is almost right around the corner).

We arrived at the ER around 2:30 a.m. and where taken straight back, no waiting.  You see, Charlie is taking several immunosuppressant drugs, so sitting in the waiting room is not an option.  Well, plus the whole ALMOST 106 degree temp… yeah, that’ll get people moving!

The ER staff was friendly enough, but they were freaked out about our GI doc not being local.  At one point the on-call doc yelled to the nurse, “What was the name of this…doctor?”  The nurse turned to me and I spelled it for her.  She said, “WHERE is he?”  I said, “New York.”  She left the room and a minute later I heard this very southern voice say loudly, “New York City?!?” (think Pace picante sauce commercial).  If I hadn’t been so terrified I would have found the humor in the response.

What did make me laugh was when we were alone in the room for a few minutes Charlie started chanting, “Green Our Vaccines! No vaccines! Green our vaccines!”  I’m fairy certain this had more to do with NOT wanting a needle stuck in him; but, either way, it was funny.

The ER doc ordered labs, nasal and throat swabs, and a chest x-ray.  Labs came back with markers indicating liver problems, x-rays were clear except for a giant gas bubble… he is his father’s son, swabs came back negative for flu/strep.  At that point the doc explained that he really had no idea what was going on and that he felt it would be best if he transferred Charlie to our local pediatric hospital, LeBonheur.  He also mentioned that he had already spoken to the ER doc at LeBonheur and was told to go ahead and get IV fluids going stat.  Because Charlie would have an IV in, he would need to be transported to LeBonheur in an ambulance.

Mike volunteered to follow behind with the car so I could stay with Charlie.  (Mike, thanks for that huge sacrifice, I know you wanted nothing more than to hold on to your little buddy.)   I had been trying frantically to get in touch with Dr. Krigsman.  We didn’t have his number, or any contact info with us and our house was locked up tight with no way for anyone to get in (long story).  So when Mike offered to follow behind I said, “Call Ang. Tell her what’s going on. Tell her we don’t have Dr. K’s number with us.  Ask her to email David Kirby.  He can contact Dr. Wakefield, who I KNOW will have a way for us to contact Dr. K. It’s our only hope. It’s the weekend, it’s the sabbath, I don’t want to wait until Monday.”

The ride across town was fine.  The EMT was very sweet, a young guy named James.  He and Charlie chatted about Legos for a bit and then James said, “Charlie, are you having any pain anywhere in your body… is there anything that feels not right?”

Charlie said, “Yes!  Whew! (as if he had just been waiting for someone to ask) My DNA, there is something wrong with my DNA.”

James looked over at me with raised eyebrows and mouth agape.  I said, “Out of the mouth of babes right?”  He just laughed.

Charlie then spent 10 minutes pointing out buildings and telling us in which year they were built.  Example, “Hey James, see that white building over there?”  James said, “Yep.”  Charlie said, “That building was made in 1947.”  James looked over at me.  I just shrugged.  Sure, I was born and raised in M-town; but that doesn’t mean I know a damned thing about it - other than some stuff about that Elvis dude.

As we passed the signs for the Memphis Zoo, Charlie said, “James, I don’t think I’m going to the hospital.”  James said, “You don’t? Where do you think you are going Charlie?”  Charlie said, “I think you’re taking me to the zoo in this special ambulance.”  James said, “Well, I’ll tell you what… I have to take you to the hospital so the doctor’s can fix your DNA; but, if you come to the zoo on Tuesday I’ll give you a pass.  I’ll be there all day for geriatric day… I know the patients we transport would be thrilled to have you there with them!”  Charlie said, “Okay. Thanks James. But I really wish you would take me to the zoo today.”

We were transported safely and swiftly to LeBonheur’s ER.  The EMT’s rolled Charlie in on the gurney and handed a nurse the paperwork.  She quickly read over it and then said loudly, “Why is this child on immunosuppressant drugs?!?”  I explained everything to her.  She just looked at me, then she said, “So you’re visiting from New York, or is it Texas?”  I tried to be nice.  I truly did.  I said, “No, we chose to take our child to the best pediatric gastroenterologist… who happens to practice in New York and Texas. We wanted the best for our child.  We got it.”  She seemed satisfied with that; although the sigh, eye roll, and sideways glances at her coworkers told a different story - a story we all know too well right?

Mike arrived shortly after us.  He said, “Okay, I called Ang. She contacted DK, Kim Stagliano and a bunch of other people.  DK told her he would contact Andy.”  I closed my eyes and sent a silent thank you to Ang, DK, Kim, Dr. Wakefield, and many others.

Charlie was admitted to the LeBonheur ER, where over the course of six hours we waited to hear news on his condition. The attending doc ordered blood drawn to check the liver, as well as ammonia level.  She felt sure both were fine.  Because it was still unclear what was really going on, the attending doc requested Charlie be admitted and moved upstairs.  We then waited two hours for the admitting doc to pay us a visit.  It was worth the wait.  Dr. Mike was awesome!  I just love the way everyone at LeBonheur is with the kids and families - they are top rated for a reason.

At one point Charlie squinted at the wall in front of him and said, “Mom, what’s that light?”  I looked behind me and didn’t see a light, “What light babe?”  Charlie lifted his hand and pointed to the wall behind me, “THAT light… that angel light.”  I was almost afraid to turn around this time… But when I did there was nothing there.  I walked over to the wall and followed the line of where he was pointing.  I said, “Right here?” and put my finger on the wall.  He said, “No, up more.”  I moved my finger up the wall until he said, “There! Stop! THAT angel light!”  I said, “Do you see a light here baby?”  He said, “Yep, it’s an angel light!”  I said, “Really? Well, I don’t see it.  I sure wish I could though.”  He just smiled at the wall.  I looked over at Mike, who was looking down at his phone.  I looked back at Charlie and I said, “I guess you have to be an angel to see an angel light…”  He said, “Hmmmm.”

At 3:00pm Charlie was finally moved upstairs to a room.  The room was private and had a great view of M-town - which Charlie loved.  As the nurse got him settled in the bed he looked out the window and said, “Wow! Thanks for this great room.  It’s kinda like a hotel.”  We put his favorite quilt (handmade for my teenage son by my Great Uncle Charles (Bo) Goddard, who had a quilt hanging in the Smithsonian a while back) over his bed sheet and he was a happy camper.

After various nurses, aides, and staff came in and did their business, we were able to order some food for Charlie.  Special diets and hospitals don’t mix.  Funny huh?  You’d think a hospital would be uber sensitive to allergies.  Yeah, not so much.

I spoke to the kitchen about options, which were slim at best.  After sending the poor woman on many trips to read ingredient lists, we were able to come up with a nice, healthy meal.  Charlie ate enough to curb his hunger… but his appetite was definitely not what is normally would be.

During this time I was able to contact Ang.  She told me she sent out the email to every person she thought could help, including Kim Stagliano, who turned around and contacted lots of others.  I sent Kim an update on Charlie and a thank you message.  She responded with:

Jeanne I’m glad to hear that. We had the emails and texts flying! Katie Wright, Jane Johnson, Kevin Barry and many more were working to help Charlie. That’s what we do, Jeanne. We fight like hell for our kids - and our friends. Isn’t that fine and comforting knowledge? Kiss Charlie for me. KIM

I responded with:

Well you gave Mike and me chills with that one. I didn’t cry. I didn’t. If they tell you I did they’re a bunch of damned liars!

Kim wrote back:

They don’t call us mother and father warriors for nothing. And having had Mia in a hospital bed many times with clueless docs and food she couldn’t eat (they brought us coffee creamer when I said she was casein free) I called out to my DAN! doc like a lifeline. Keep us posted. We’re off to Church. I’ll add prayers for you. KS

During that hour we received so many calls, emails, text messages, Tweets, and FB messages.  We were overwhelmed with the support, love and kindness you all gave to us, and more importantly, the love you sent to our son.  Words cannot express how much we appreciate that you were all “there” for us.  Needless to say, you are all the BEST!

We cleared the room of the dinner mess and got Charlie all tucked in for the night.  He was finally sleepy.  He asked me to sit on the bed with him.  He held my hand and started to doze off, staring at me.  Then, in the quiet of the room we hear, “Mom, what’s that on your head?”  He pointed between my eyes.  I said, “That’s a mole.”  (Also referred to as my third eye by some rude people)  Charlie said, “How long until that goes away?”  I said, “It will never go away… I’m afraid it’s there to stay.”  Charlie put his hand on the side of my face and said, “Oh Jeanne, I’m so, so sorry”  as he stared into my eyes and then up at my disfigurement, and then back down at my eyes.  FYI: It’s a small mole, the size of a pin head; but he was acting as if I needed a sling to carry it in.  He then dozed off and slept for about 10 minutes until he woke up fussing about being nauseous. The fever was also back in full force.

The nurse had to call the doctor for orders, which ended up taking thirty minutes.  Anti-nausea meds were administered and Charlie started getting sleepy again.  Twenty minutes later, as Mike and I shared the small space of the couch, Charlie cried out in pain.  I jumped up and said, “What is it?”  He said, “My eye! It’s going to pop!”  I turned on the light and saw that Charlie’s left eye was puffy and swollen.. growing by the minute.

The nurse was called and she called the doc.  As we turned down the lights again, Mike and I settle in under a blanket.  I sneezed.  Charlie whispered sleepily, “Bless you.”  It was adorable, and all I could think was how truly blessed I really am.  By the time the doc’s orders were received and processed, Charlie was sound asleep.

That evening my cell phone rang.  I said, “Hello?”  The voice on the other end of the phone said, “Jeanne? This is Jim Moody. I heard you need some help getting in touch with Arthur Krigsman.”  I just sat there staring at my husband, unable to speak.  Mike was mouthing, “What?!? Who is it? What’s wrong?”  I shook myself out of my shock and answered Jim.  We spoke for quite some time, him doing most of the talking - assuring me that Dr. K would be contacted and requesting all of the details of what had happened so he could pass them on.  Throughout the conversation I realized Jim’s words were soothing my raw nerves.  The man is very e about a lot of subjects! His call came at a time when I truly did not think I could hold in my emotions a second longer.  Talking to Jim brought me back from the ledge… so, thanks Jim!  You’re awesome!!

The next morning Charlie woke up feeling great. He discovered he could Twitter/Tweet from Mike’s laptop, so he was happy as a lark for quite some time.

We were all convinced he was going to be released, until Charlie discovered a hidden mirror in his tray table and said, “Hey! Look how round my face is!”  That’s when we noticed the swelling on the left side of his face was back.

An hour or so later he was given Benadryl.  An hour or so later he was passed out cold.  An hour or so later the doctor showed up. She was awesome.  We had a long talk about what might be going on and shared our theories.  She then told us that she wanted to order a sinus x-ray, another flu culture, and another blood culture.  They were looking for a virus, they just didn’t know which one.  They had to rule out the flu again because the test from the other hospital was not sensitive enough.  None of us thought for a minute it was the flu, including the doctor; but according to her, the test had to be repeated so the flu could officially be ruled out as the cause of Charlie’s illness.

The last bit of news she shared with us is that she wants Charlie to stay put.  She asked how we felt about that - I was fine with it (felt safe being there), Mike was iffy, Charlie was against it (I think I saw him making a picket sign to protest the decision), and totally disgruntled that the doctor did not take his opinion into account when making her final decision.

A few hours later a nurse came and took us down to x-ray for the pictures of Charlie’s sinuses.  He enjoyed getting out of the room and riding in the wheelchair.  When we got down to the x-ray department, Charlie noticed the techs were working at their computers.  He said, “Hey ladies, are you working on Window’s computers?”  The nurses laughed awkwardly and nodded yes.  Charlie said, “Is that Windows XP or Windows Vista?”  One of the nurses answered Charlie and he said, “Oh. Well good luck with that. Windows is bad. You should get a Mac, or you could use Linux, or Ubuntu.”  The ladies thought that was a hoot. Charlie did a great job with the x-rays and enjoyed the ride back to his room.

When we got back to the room my daughter called us.  She was at school, on her break.  Instead of hanging out with her friends, she chose to go to the office and call Charlie.  I handed the phone to Charlie and this is what we heard, “Hi Sissy. Yes. No. I’m okay. Well, I was really, really sick. We went to a hospital and they couldn’t help me so they put me in an ambulance and sent me to LeBonheur Children’s Hospital. I had to have a drinker (IV) put in my arm and lots of labs. I have to pee in a jug. I’m sick. Yes. Okay. Sissy? I love you!”  Then he looked at me and said, “Here’s your phone Mom. Sissy said she loves me more.” And he laughed.

That night Charlie’s fever spiked back up, so it was good he was still under the care of the very capable nursing staff.

The next day, Monday, the doctor stopped in to tell us the sinus x-rays were clear and that we wouldn’t get the cultures back for about a week.  She asked Charlie if he wanted to go home.  He was ecstatic!  She gave him a high five and left to process the discharge paperwork.  Charlie decided he was ready to get out of bed so we rolled his IV cart over to the couch and he played on the laptop.

Several minutes later he said he needed help registering. When I looked over at the screen he had pulled up Disney.com and was planning a family vacation. By the time he went through all the steps we were headed to The Grand Floridian for a one week stay (family of 5) for the bargain price of $6,500! Gee, why don’t we go on vacation more often? It’s a good thing he didn’t know my credit card was hiding in my purse…I’m having flashbacks of the $2500 robot he put in a bid for on my eBay account… (((shiver))) - I think we all remember THAT story!

As we were waiting for the all-clear to leave, I sat on Charlie’s bed and we played Legos on the tray table.  The room was quiet.  Charlie said, “Mom do you pray?” I said, “Yep.” He said, “How do you pray?” I explained the process (which he already knew thanks to the parochial education he received last year -until they kicked him out).

And then there was a knock on the door. An older gentleman walked in and shook our hands. He introduced himself as the hospital Chaplin… Yeah, I know, weird right?!?   I said, “Well that’s weird!”  The Chaplin looked at me as if I were off my rocker.  I think he thought I was saying it was weird he is a Chaplin. ;-)  He said, “I came here today to say a prayer for Charlie.”  Yep, the hair on the back of my neck was standing up!

I was sitting on the bed shaking my head back and forth… shocked.  The Chaplin must have thought I did not want a prayer because he was looking at me oddly.  So I explained, “Sir, Charlie was just asking me if I pray, how I pray, and if we could pray… Then you show up.”  The Chaplin said, “I wasn’t even supposed to be on this floor. I was supposed to be somewhere else.  But instead I came to this room.”

He then asked Charlie if he could say a prayer for us.   Charlie said sure, closed his eyes and said, “I wish I could go home.”  So the Chaplin said his prayer, including the request that Charlie be allowed to go home.  The Chaplin gave Charlie a high five, shook our hands again, and left the room.  I looked over at my agnostic husband and watched as he picked up his jaw from the floor.  He then sheepishly looked up.  It was quite the experience!

Not long after that, Charlie was discharged and we headed home.  When we pulled into the driveway Charlie was clapping.  When we opened the door he stepped into our home and said, “Hello kitchen table! Hello Legos! Hello computer! I missed you!”

Not long after arriving home there was a knock on our front door.  A man stood there, in the wind, holding a big balloon bouquet.  Charlie’s teacher, classmates, and several other teachers sent their well wishes.  The kid was so excited!

Shortly after that there was another knock on the door.  This time it was Charlie’s teacher.  She had come over to deliver some handmade cards his classmates had made for him.  Each one was special and was either a robot, a computer/game theme, or a heart.  One girl said, “Dear Charlie, I hope you fill butter soon. Do you think you will fill butter soon and come back to school? I love you!”

Charlie sat in the living room and read every single card. He looked closely at the drawings.  He held the cards and ran his fingers over the words.  He was so happy that his friends had sent him these get well soon wishes.

Charlie’s teacher left and Mike and I went about getting some dinner started for Charlie.  At one point Mike said to Charlie, who was sitting at the table drawing, “Hey buddy, whatcha doing over there?”  Charlie said, “I’m making cards for all of my friends and my teacher.”  We walked over and he was making handmade thank you cards.”  I think the fact that I was sleep deprived dampened my reaction time, because I walked away smiling and stepped into my office.  As I sat in the chair I realized I was feeling verklempt.  Next thing you know I’m sobbing (which I hadn’t done at all during the entire hospital ordeal).  I walked back into the kitchen and said to Mike, “Don’t be alarmed but I’m having somewhat of a breakdown.”  He just nodded and I noticed his eyes were a little glassy and he was sniffling.  We both walked over and hugged Charlie.

The next day Charlie was back at the table drawing.  I said, “What are you drawing babe?”  He said, “A card for LeBonheur Children’s Hospital.”  He handed the card to me.  The front said, “Yippeee! I’m not dying!”  There was a drawing of Charlie with sunbeams coming out from all around him. At the bottom of the picture he wrote, “xoxoxoxoxoxottttt” - the “t” stands for tickle, his daddy taught him that one.  I opened the card and the note said, “Dear LeBonheur, I’m guna feel much better tomorrow. Thank you! Love, Charlie”  The opposite page had another drawing. This one had Charlie and a doctor (whom he named Doctor Gonzo… LOL… I guess he’s seen the Gonzo/Hunter Thompson book on my desk!).

He asked me if I would take him to the post office so he could mail the letter.  I agreed.  We’re doing that today.

Charlie is doing much better and is happy to be home.  We hope to have some answers to the puzzle this week (follow-up with the ped is tomorrow).  Either way, we have the best team working on the case (LeBonheur, Dr. Davis, and Dr. Krigsman).

This was the first time one of my children had been admitted to the hospital.

I pray it was the last.

Oh, and Ang (aka Bruiser)… thank YOU.  I love you man!

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