Don't worry. He just has "the flu".

Psalm 86:6-7
Hear my prayer, O lord; listen to my cry for mercy.  In the day of my trouble I will call to you, for you will answer me. 

I decided to take a walk down memory lane in order to prepare for this post, so I got out Christopher's baby book and started thumbing through the pages.  It's hard to believe he was ever that little!  As I read through some of the things I had written, I was struck by the fact that a lot had happened over the last 16 years.

There was one page where you could list "mishaps and illnesses".  If you would have asked me then, I would have said that this page would most likely be filled with entries about colds, the flu, and earaches- all the normal kid stuff.  Unfortunately, the entire page was covered with information about hospital stays, emergency room visits, and surgeries. 

I looked at the first entry regarding his first surgery and hospital stay.  It said:  Pyloric Stenosis, 5 days in hospital, developed infection, had feeding problems, developed flu, problems continued for approximately one month. 

Two things struck me when I read that.  First of all, "feeding problems" that was the understatement of the year!  It's interesting to read that now with 20/20 hindsight.  I really had no idea at that point in time just how big of an issue that was going to become.  Secondly, the part about him having "the flu" was something that we were about to find out would be the default diagnosis that we would be given time and time again.  Unfortunately, it would turn out that Christopher's true diagnosis was so rare and difficult to determine that the doctors would just chalk his symptoms up to "the flu".  After all, the symptoms did mimic the flu in many ways, so it seemed obvious that it was the cause of Christopher's continued problems.  The main problem (at least we thought it was), Pyloric Stenosis, had been solved with the surgery, so it must be the flu.  But...since when does the flu last for 6 months?  It turned out that it would take that long to really figure out what was going on. 

I really do wish it had been just that easy.  I wish they had been right about that flu diagnosis because the flu is "normal" and "temporary".  It can be easily managed.  It doesn't make you a frequent flier at the hospital. Our first stay at the hospital would not be our last.  We were about to become "regulars" on the pediatric floor.


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"home sweet home" well, at least for today.

Proverbs24:3
By wisdom a house is built, and through understanding it is established; through knowledge its rooms are filled with rare and beautiful treasures.

Whoever coined the phrase "home sweet home" really knew what they were talking about.  Home is family and comfort.  It's the place you want to go back to. You really appreciate the "comforts of home" when you leave it for awhile.  This became glaringly obvious to me after our stay at the hospital.

I missed my husband.  I missed my kids, and I missed us all being a family at home.  I even missed the little things like eating together at regular times instead of midnight runs to the cafeteria for coffee and whatever was left over.  I missed having my own private bathroom.  On the pediatric floor at that time there was only one bathroom with one toilet for both men and women!  Imagine the line in the morning to brush your teeth.  I especially missed my bed.  At the hospital I slept in a chair which really wasn't sleeping at all. 

Here we go.  Now we can get back to our normal, ordinary, chaotic life with toddlers.  There is just one problem.  Christopher's symptoms have not gone away.  In fact they are getting worse.  I think he is losing weight.  I know something is wrong.  Feeding him has become a real challenge.  He doesn't want to eat.  Apparently he is going to be a future gymnast because when I try to feed him he does a back bend that  I'm sure would rate a perfect "10" at the Olympics.

I check my calendar to see when his follow-up appointment is with the surgeon, but it still is days away.  I decide to call the pediatrician for an appointment.  I gather up the "troops" in the minivan and head off to the doctor's office.

The doctor examined him, weighed him, asked me a bunch of questions, and then came to the shocking conclusion that he had...wait for it...the flu.  I tried to explain to him that Christopher was refusing to eat, and that anything he did eat he projectile vomited across the room.  The doctor's answer- he has the flu.  I left the pediatrician's office frustrated and worried.

It got to the point when I called the pediatrician's office every morning that they recognized my voice even before I identified who I was.  I'm sure they were getting frustrated and worried about me by this point, but Christopher was not getting better. 

We visited the pediatrician's office again where I told him that Christopher was hardly eating at all, his weight was down, we were using beach towels as burp rags, and we needed help NOW!  The doctor could see that I was becoming increasingly agitated, so he asked me to feed Christopher in front of him.  What was I thinking at that point?  I was thinking that Christopher should perform his little projectile vomiting trick all over the front of the doctor's white lab coat.  Did I mention how frustrated and worried I was?  Well, add desperate to that list.  I just wanted that doctor to understand what was going on and help my son, NOW! 

Christopher didn't vomit all over the doctor, but he did do his back bend trick.  He spit up a little, so the doctor immediately seized on the point that that was proof that it just "looked like a lot".  I showed him the beach towel I was using as a burp rag, but he was unimpressed.  Okay, but what about his weight?  I asked the doctor if he was concerned about the fact that Christopher was losing weight?  Aren't babies supposed to gain weight, not lose it?  The pediatrician told me that he wasn't surprised that Christopher was losing weight due to the fact that he had the flu!  He told me to go home, be patient, and call him if things didn't clear up in a day or so.  I took that part of his advice to heart.  Believe me!  I called him alright, everyday!


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Was that outloud?



He's so cute!

Apparently, I am just not getting through to this pediatrician.  I keep calling him to tell him things are not improving, and he keeps telling me that Christopher has the flu.  Why doesn't he hear me?  He went to medical school.  Didn't they teach him that the flu lasts for days, not weeks?   I didn't go to medical school, but even I know that.  I would have more respect for him if he would just tell me that he doesn't know what's wrong and send me to a specialist or something.

I decide to go to the specialist on my own.  Christopher still has that post-op appointment with the surgeon at the hospital.  Surely, he will know what's going on here.  After all, he sees kids with all kinds of weird stuff.  I'm confident he will be able to help us.

Unfortunately, my confidence is completely shaken when I hear him utter those now all too familiar words, "he has the flu".  I know I was screaming inside my head, but I think he could still hear me!  Frustration must have been written all over my face because he immediately tried to reassure me, or at least he must have thought he was.  He left the room, and then another doctor came in.  Now, who is this guy, and why is he here?  Oh, I get it.  He must be some other kind of specialist.

The only thing this guy specialized in was insults!  He looked me straight in the eye and told me that I was a hysterical first time mother.  He said that I was doing something wrong in feeding Christopher, and that Christopher's weight was plummeting because of it.  He asked me if I was aware of the fact that Christopher's weight was in the negative territory on the growth chart.  I stood there absolutely dumbfounded!  I was at a complete loss for words which, as my husband and children can attest to, almost never happens!  "Doctor Insult" left the room.  I was fuming mad.

The first doctor came back in, and he became the target of my fury.  I asked him in a very angry tone who that other guy was.  Why did he send that guy in to insult me?  I explained to him the charges that Dr. Insult had leveled against me.  By this time, I was spitting mad!  I know the screaming wasn't just inside my head because I could hear myself yelling at him.   I am not a first time mom.  Christopher is my third child, and calling me hysterical...are you serious?  I wasn't hysterical before we got here, but I'm gonna be if you don't help my son!  What is wrong with you people?  Is this some kind of horrible  dream.  If it is, wake me up!  I didn't come up here to be insulted.  I am well aware that Christopher is losing weight.  That's why I'm here.  Help him NOW!

Even to this day, I still find this exchange at the doctor's office absolutely unbelievable, not to mention completely unprofessional.  I still don't understand why they reacted this way, or why they felt it necessary to "blame the messenger".  I was coming to them for help, and instead I was being accused of being a bad mother.  I know I'm not perfect, but this was just too much!

Now what do I do?  Who do I go to for help?  Then the doubts came.  Am I doing something wrong?  Maybe I need a quick tutorial on "how to feed your baby".  I look at my other kids.  I must have done something right.  I never had any problems feeding them.  They're perfectly healthy kids.  Maybe Christopher just has some weird feeding style I don't understand, but what's with all that throwing up?  Maybe their right about one thing.  I think I must be hysterical now.   I feel like I'm living in some alternative universe.


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"When times are tough, the tough keep going"

Jeremiah 17:14  
Heal me, O Lord, and I shall be healed; save me, and I shall be saved, for you are my praise.
                 






*** Oops!  I forgot to share one other thing that happened when Christopher was in the hospital that first time.  While he was there, we found out that the Potassium levels in his blood were abnormally high.  What does that mean?  Apparently, it meant that he was born with immature kidneys.  Can they do anything to help them "mature"?  Yes, they gave him Sodium through his IV and made an appointment for him with a Nephrologist (kidney doctor).  We were told not to worry.  Things would improve with time.

Time seemed so crazy during those early days.  Days and nights were so mixed up since it was impossible to get Christopher on a regular schedule.  Everything was turned upside down.  His eating, his sleeping, his "diaper issues" were all completely abnormal.  He cried all the time, and there wasn't one corner of our house that his projectile vomiting hadn't reached.  He was worn out.  We were all worn out.  Home was supposed to be our comfort zone, but at this point it was difficult to find any comfort at all.

I kept calling the doctors for help.  I insisted they examine him, but I kept getting the "party line", he has the flu.  They gave me advice on "how to feed a fussy baby", and sent me home.  I think at this point they were completely frustrated with my constant phone calls, so they just dismissed me.  Now the doubts really started to ramp up in my mind.  Maybe he is just a fussy baby. Maybe I'm doing something wrong.  Maybe I'm just making too much out of all of this.  Maybe this is just a bad dream.

I wanted to give up, quit calling the doctor everyday, and just accept that Christopher's "normal" was just different than everybody else on the planet.  The problem with that was that he wasn't growing and gaining weight normally.  I knew this couldn't go on. 

I believe that God gives moms a special kind of  "radar" and determination. when it comes to our children.  He wouldn't let me give up.  I know He kept guiding me in the direction He wanted me to go, so I went.  I didn't give up. 

I reminded myself that nobody knows Christopher as well as I do.  When it comes to my son, I am the expert.  I have to listen to that quiet voice in my heart and keep up my endless appeals to the doctors for help. 

I pick up the phone and call the doctor again.  The receptionist recognizes my voice immediately, and asks me how Christopher is doing today.  It is such a simple question, but I can't tell you how much I appreciate her sincerity and her kindness.  It gives me hope that I will find someone who will be able to figure all this out.


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A change of scenery



The vacation planner

I think my husband, Mike,  could see that I was seriously stressed out, so he turned an upcoming business trip he had into a mini vacation.  It wasn't far away, but it meant no cleaning or cooking.  It was just a couple nights away in a hotel where we could "get away and relax".  That sounded great to me!  Count me in!

Rest and Relaxation!

I made arrangements with my mom to watch Michael and Ryan for the weekend, but I decided to take Christopher with us.  I'm not sure how I thought this was going to allow me to "get away from it all", but I just didn't feel comfortable leaving him.  Besides, asking my mom to watch Christopher as well was just too much.  Michael and Ryan were plenty of "circus" for one person to handle. 

With the suitcases in the car, Christopher in his car seat, and a healthy supply of  beach towels we headed off to "relax".  Looking back now, I would definitely not use the word "relax" to describe what would turn out to be nothing short of disastrous.

It all started out great.  We arrived at the hotel as scheduled and unpacked our things.  I set up a make-shift nursery, and then we headed out to get some dinner.  Nothing had changed with Christopher, but I told myself that at least we were doing it in a more "relaxed setting" where there were no dishes or laundry to do.  At that point I figured that this was the closest thing I was going to get to a real vacation, so I decided to count my blessings and enjoy my time away even if I was covered in beach towels and baby vomit.

The next day Christopher and I went to the meeting with my husband.  The meeting was being held in a banquet room at a hotel and there were a lot of people in attendance.  I spent most of the day going back and forth from the table where we were sitting out to the hallway in order to care for Christopher. 

I remember thinking how thankful I was that Christopher wasn't crying as much as he usually did at home.  He was unusually quiet.   Maybe the long car ride had soothed him.  Maybe he was "getting away from it all" and "relaxing" too.  That turned out to be wishful thinking.

As the day went on, Christopher was crying less and sleeping more.  He wasn't eating much, and what he did eat came right back up.  This was unusual even for him.  Then I realized that he stopped having wet diapers.  He was about 2 months old, and I was concerned that he was becoming dehydrated. 

I got up from the table where we were sitting at and headed for the hallway along the little trail I had inevitably made on the carpeting of the banquet room.  I tried to feed Christopher.  He wasn't interested in eating much, but then it happened.  He started vomiting so hard that green bile covered the beach towel burp rag.  He didn't cry.  He just closed his eyes, went back to sleep, and was eerily quiet.  Okay, I said to myself, that's it.  Something is very wrong!

My husband had come back to check on us, and when he saw the look on my face he knew it was time to go, vacation over! 

This time we didn't load the car, we threw our stuff in.  Mike pointed the car northward, and we drove off towards a very uncertain future.


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A "chronic" reality

This highchair is for toys!

As the miles flew by, and we made our way back home, I began to think about what to do next.  It just so happened to be a Saturday, so our pediatrician's office was closed.  I could try calling him again, but I would probably be met with the same skepticism as I had received on all those previous calls.  "Ditto" on calling the surgeon back again.  As far as he was concerned if the problem wasn't surgical, it wasn't a problem.  Then I thought about my doctor, the obstetrician, who had delivered Christopher.  Maybe he would be able to help direct us. 

I dialed his number and explained the situation.  He was very concerned about Christopher's hydration status and told me to get him to the emergency room as soon as possible.  He explained that we needed to ask to have a Pediatric Gastrointerologist (GI doctor) examine him.  We knew just where to go because this was the hospital where Christopher had had his first surgery.

We weren't really that far away from the hospital, maybe an hour and a half or so, but it seemed like it took forever to make the trip.  My sister and her husband were there with us in the car.  They had gone on the "mini vacation" with us.  It felt good to have them there for support as we all tried desperately to reassure each other that everything was going to be okay.  Mostly, there was just a nervous silence the entire way back.  Christopher was very quiet.  He slept the whole way.

Throw it here!

Finally, we pulled into the parking lot of the emergency room.  As we walked through the doors of the hospital, we had no idea that we would be "regulars" there for the next 6 weeks.  There would be countless procedures, tests, and surgeries.  Over the next 42 days we would experience the pain and frustration of a world we had never known before, and we would have to face the fact that our son was chronically ill.

To my surprise, I would soon find myself looking at my own reflection in the mirror only to realize that I recognized the "look" on my face.  It was the same one I had seen before on the faces of  the other moms who were living with the same cold, hard reality that their children were "regulars" too.


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Maybe I don't speak the language

1Peter 5:7 Cast all your anxiety on Him because He cares for you.






                                             The Lord is always with us, even in the emergency room!



The emergency room is an interesting place.  You just never know what you are going to get.  There are all kinds of people there from all walks of life.  Some are there for lesser injuries like cuts, broken bones, and bruises.  While others are there with some very scary injuries and illnesses that may alter the course of their lives, or in fact end their lives.

I have found that in the emergency room emotions are on high, and patience is in very short supply.  After all, you are there for an emergency, your emergency.  You need help, and you need it right now!  Sometimes you get right in to see the doctor because it's a slow night, and other times you may have to wait for hours.  We have been to the emergency room dozens of times.  There have been times when we have been taken right back to see the doctor, and then there have been other times where we have literally had to wait 6 hours or more.  You just never know. 

365 days a year and 24 hours a day the emergency room is open for business and ready to help those who need it, so time seems to take on a different meaning when you are there.  There is no such thing as a "quick trip" to the emergency room (even if you do get seen right away), so you always need to be prepared to wait, and then wait some more.

This proved to be especially true the night we returned from our so-called relaxing (but very short)vacation.  Upon entering the hospital we went up to the front desk to check in.  I don't remember having to wait very long in the waiting area.  We were taken right back to a room where we explained what had been going on with Christopher since he had been born.  They examined Christopher, and it was obvious that he was dehydrated.   Then in came the nurse to insert that awful looking IV in order to get some much needed fluids into his tiny little body.

At this point I was feeling pretty good about the way things were going.  We were seen right away, got an IV going "pronto", and not one person had mentioned anything about him having the flu.  They seemed genuinely concerned and ordered some blood work.  Okay, I thought to myself.  These people are getting right on this, and they are going to be able to help.

I think I spoke (sorry, I mean thought) too soon.  The hours started to tick by.  One hour became two and then three.  Then a strange thing started happening.  They must call it "ping pong doctoring" or "tag your it" because a series of doctors stopped into the room to see what was going on, ask questions, and leave.  I began to think (sometimes out loud) to myself, who is in charge here?  Why do we have to keep explaining things over and over again to so many different people in white lab coats?   Is this a team sport or something?  If so, who is "gonna call the ball"?  I think I'm starting to feel that familiar old frustration creep back in.

At about the third or fourth hour another "white lab coat" appeared.  This doctor told us that Christopher's lab work was back.  The results showed that he was definitely dehydrated.  He explained that the plan was to "beef him up" on IV fluids and send him home since the blood work didn't show any other abnormal levels.

Then I remembered that I was supposed to ask to have a Pediatric Gastrointerologist (GI doctor) look at Christopher.  I was stunned by the response I got from this request.  Believe it or not, this doctor actually told me that since it was Memorial Day weekend, there just wasn't anybody around.  Everybody was on vacation.  I'm thinking to myself...  don't people get sick on weekends and holidays?  Surely they already know this.  The doctor then tells us to just take Christopher home and call back on Tuesday (it's a 3 day weekend).  Then he said it.   Yes, that's right.  He told us, don't worry.  He probably just has the flu! 

After I picked my jaw up off the floor, I kind of lost it for a moment.  I had such high hopes that somebody was going to help us, and yet here we were again.  We were right back at the same old place, same old (wrong!!!) diagnosis. 

For the next two or three hours my husband and I lobbied hard for Christopher.  We went over everything since his birth in great detail.  We even fed Christopher in front of the doctors, and when he projectile vomited the entire feeding across the room for them, they seemed unimpressed.  We reminded them of his previous GI problem and surgery, but that too left them just shrugging their shoulders. 

Since this was not the first time I had received this kind of response, I'm not sure why I was so surprised.  I began to think that I must be speaking in some kind of foreign language that they couldn't understand.  Maybe I just wasn't using the right "doctor" words to describe what was going on. 

Then we demanded to be admitted.  I told them that I wanted to make sure that Christopher remained hydrated over the long weekend, and that due to his obvious feeding issues I was unable to do that at home.  I said that when all the doctors come back from vacation on Tuesday, they can examine Christopher then in the hospital.  We basically refused to leave!

However, they basically refused to budge, and decided to "wait" us out hoping we would get frustrated and leave.  More time passed, and then some more.

My sister who was 6 months pregnant, tired, and hungry had been waiting out in the waiting room for us.  She can be a particularly "loud" and "persuasive" person when the moment demands it.  My husband and I were completely exhausted, so we decided to unleash her on them.  That seemed to do the trick.  Maybe they were worried that if she continued to yell like that her blood pressure would go through the roof, and they'd have another patient on their hands.  Maybe they were concerned that her anger would send her into premature labor.  Whatever it was, it worked.  They "blinked" and Christopher was admitted.

Needless to say, we were relieved!  We had won the battle, but....not the war!



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