I felt like they weren't listening

Hey Toby, I love you

"Hey Toby, I love you", I say from the front seat as were driving. It's met with a sloppy Raspberry from the back. I wonder if he knows how much I love him. How much he consumes my thoughts every day. Or I wonder if he's just blissfully unaware, lost in innocent playful thoughts. Toby can say just about everything now. If he asks you what something is, and you tell him, you bet the next day, the next week, the next month -  he'll still remember what that word is.  He knows his numbers, his colors and most of his letters. What he can't say yet is I love you. (Maybe, Just Maybe, a Raspberry is his way of saying it!?) I'm waiting anxious to hear those words. I think back to the early days with him, when I thought he hated me. When I thought I was making him miserable. I remember vividly one of his first doctors appointments where he received vaccinations. The weirdest thing happened. As he got stuck and screamed out in pain, I rushed to pick him up and I actually soothed his crying. For one of the first times, I did it.  It's one of the first memories I have where I felt loved by him, where I truly felt like I was doing something that I was meant to be doing. I don't think too many moms out there recall vaccinations as rewarding, but for me, it's one of my best memories. Now that I've had these years with him and know for a fact he loves me and needs me, those trips to the doctor's office no longer have any glimmer of something rewarding.  Especially now.

If he's hungry enough he'll eat...And other falsities 

About six weeks ago, one of Toby's routine blood checks came back with signs of abnormalities.  I received the call from his GI physician, and was asked to schedule an appointment with them as soon as possible.  I remember this was at the end of January, as it was dead smack in the middle of a torrential vomit fest - his worst one yet.  After taking him to the pediatrician AND the urgent care to make sure he wasn't getting dehydrated, I was anxious to get to GI to see if they could provide some help.  Offer some advice. There, his doctor described to me that labs had indicated there was inflammation in his intestines.  He asked if there was any family history of inflammatory diseases, or if Toby had recent bouts of diarrhea - neither of which were true.  His labs, while abnormal, weren't high enough to be considered critical, but were high enough to cause concern.  It had been decided that another endoscopy, this time with a colonoscopy, was in order - to both validate the labs and check out whats going on in there.  A colonoscopy, It's explained to me, is not recommended for a bugger his size - There is not a lot of room to work with, which causes more room for perforation and other awful things.  All this said, the doctor thought it was necessary, and so we again obliged - knowing we would have to carry him down that long, bright hall, and watch him be put to sleep in a room full of strangers. I don't care if your child is being put to sleep for 10 minute ear tubes, or a procedure that lasts hours - ANYTIME you let them leave the safety of your arms into the chilly, crowded operating room - with all of its flashing lights and beeps, you are terrified.  

As for the vomit fest - GI thought perhaps he just had a bug and it would pass.  While I disagreed and though whole heartedly it was part of this madness that had consumed his body, there wasn't really much we could do to prevent it.  Anti-Nausea medicine doesn't work well on children his size, I'm told.  He wasn't dehydrated and he wasn't really in a bad mood, so....We just dealt with it.  The nurse came in and had us sign the surgery wavers, then moved into describing the prep that would be required for his procedures.  We were to cleanse his system 3 days prior to the surgery.  (This involves an absurd amount of Miralax and and equally absurd amount of diapers.)  Second, Toby was not allowed to have anything but clear liquids the day before.  Red Flag alert now.  

Can we at least have the first available morning appointment so that he can be out of his misery quicker? 

"The doctor only does afternoon surgeries, but I'll see what I can do".

How am I supposed to explain to a 22 month old who lives off of a baba that he can't have one for 24 hours?

"Well, he can have chicken broth, Jello, Popsicles, clear liquids - this should keep him full"

My child wont eat any of that stuff.

"If he's hungry enough, he'll eat it". 

Now, I know reading this it sounds cold, but there in person, I didn't feel a chilly tone from them. They really were just speaking from experience.  I'm not trying to defend their responses, I'm merely trying to make it known that I don't feel they were being rude. I feel like they weren't listening.   As it would turn out, they were wrong. 

When God takes things Literally 

When God takes things literally, it throws you off guard. Even the most obedient servant (which I will admit I am not) doesn't expect to get a literal response.  This is what Faith is - belief that is not based on proof.  Well, chalk it up to the Jonses to get a response - at an all too "convenient" time. 

It was the Saturday we were to start Toby's cleanse.  I had been dreading this weekend for 4 weeks now, and was wishing it would go by as quick as possible.  In my quiet thoughts, I would ask God, no, beg him - "Please, Please let my boy feel no pain.  Whatever pain is meant for him, please give it to me times ten.  I can take it, but he is so tiny, and helpless.  What good can come from such a pure, small soul in agony? "   About 10 hours later, God answered.  He gave me what I was petitioning so hard for.  I will spare you most of the gory details, but it involved me emptying my body from all orifices, in agonizing distress, laying on my bathroom floor.   In the heat of the moment, the LAST thing I was thinking about was God.  I thought my insides were exploding.  I considered whether or not I should go to the emergency room - by now it was 3 am, and the very last thing I was going to do was pack my sleeping angels up and cart them to a hospital.  I of coarse couldn't drive myself, I think they frown upon driving while dry heaving. My husband couldn't drive me because he needed to stay home with the kids.  So what does a girl do?  Call her Daddy.  Wake him up at 3 in the morning.  All she has to do is say 10 words - "I'm sick, I need to go to the emergency room", and he throws on some clothes and bolts out the door.  That's my dad, that's how he's been my whole life, and that's one of the many reasons I love him so.  

Toby with my Dad - 7.5 months old - 0-3 month clothes

I was admitted to the hospital and my symptoms got worse before they got better.  I was there for 3 days.  The WHOLE time I should have been tending to my son, I was stuck in a hospital bed for GOD KNOWS WHY.  Wait....maybe God does know why, I asked myself in my desolate hospital room.  That's when the next doctor came into the room.  On the very same day that Toby was scheduled to have his endoscopy and colonoscopy - I was told I was going to have one.  The same exact procedure.  At the same exact time.  (I had already cancelled Toby's surgery.  There's no way my baby is undergoing this without me.  If something were to happen and I wasn't there?  I would NEVER forgive myself.)  I laughed out loud, a response a doctor who routinely tells people they need colonoscopies rarely hears.  I explained to an emotionless face my story, with no response.  Oh well, at least my family and friends will understand the "coincidence". 

The procedure's results were uneventful and didn't provide much of any answers.  But they provided so much more for me emotionally.  Why?  Because I felt no pain.  For over 4 weeks I agonized, wondering if my son would be in pain after this surgery.  Hoping and praying he would wake up happy and smiling.  And now, I knew, from first hand experience - This isn't painful.  In fact - I didn't feel a damn thing!  In fact - I got a great sleep!  In fact - I wouldn't have known I had one unless you showed me the pictures.  What a precious gift God has given me. Peace of mind - something that is rare to come by for me these days.  God has shown me in the only way he could, my son would feel no pain from this procedure.  What a crazy guy he is. And for a second, I thought I was really sick.  Pffffft. 

Only you know your child best....

I had postponed Toby's surgery for 7 days after his original one was scheduled.  With my new found enlightenment about what an actual endoscopy and colonoscopy entailed, I was less nervous than the week prior.   We started Toby's cleanse the Saturday before his Tuesday scheduled surgery.  The cleansing part went better than expected.  He seemed more annoyed than bothered by my frequent interruptions to change his diaper.  On Monday, I woke him up in the middle of the night to sneak him a last chance bottle before he was to be cut off.  It worked, making the first hours of that day not too unbearable.  We decided to keep him as busy as possible, scheduling a trip to meet Grandma at the mall, to run around the play-yard and ride on all of the quarter machines.  There, we tried in vain to get him to eat Slushies.  We were unsuccessful.  

The day, as expected, got progressively worse. I tried the Jello.  He was entertained by the blue gelatinous goo for about 3 seconds before chucking it against the wall.  "You want me to put this in my mouth?", his stare revealed.  We tried ginger ale - with a straw even!  Nada.  I tried to trick him into drinking chicken broth from a Pediasure bottle.  I don't recommend you trying that.  Ever.  

He stomped and marched, rolled and banged on the kitchen cabinets.  The refrigerator had streak marks from his tiny little fingers grasping to get to ANYTHING inside.  My heart was breaking little by little every time I told him I couldn't give him a bite of something, or a drink of his bottle.  I'm so sorry sweet boy.  We gave him water, and more water.  Juice has never been his thing - and it wasn't this day either.  Despite what the doctors said, my child WOULD NOT eat - even if he was hungry. Before bed, we were successful with 4 mini Popsicles.  Finally, he ingested something for the day.  It wasn't much at all, but at least it kept his sticky fingers entertained for 30 minutes.  Bed time came early, surprisingly, and he slept all night long without waking up.  Something he usually doesn't do. 

In the morning, Toby was up asking for a bottle right from the get go.  I thought, power through this, you only have 3 hours until you have to be at the hospital (11am) and 5 hours until his procedure (1pm).  As I told him no, for what felt like the millionth time - he didn't fight me.  He laid his head down on my shoulder, and slept.  I hugged him tight while my husband got himself and Lyla ready to go, then we switched this comfort position with him so I could get ready.  I knew he wasn't acting normal, but I thought it was just because he hadn't had any calories.  I got him dressed and his arms went limp as they fell through the sleeve.  My heart broke even more when he didn't fight it - I had just taken it all out of him.  There's NOTHING worse than knowing your child feels like you have given up on them.  Its the most excruciating pain.   

We packed them up in the car, Toby still sleeping, and dropped Lyla off at our babysitter.  We were at the hospital checking in 15 minutes earlier than we were told.  Thank God for no traffic. Thank God for not needing Gas.  Thank God for valet.  In the same day surgery room, Toby's pale skin looked see through in the bright light.  The nurse explained that she was going to take his vitals and asked if I thought Toby was acting normal.  NO.  He wasn't.  Normal would be him crying, kicking and screaming as we walked through the hospital doors.  This was not Toby.  My son doesn't sleep in my arms while people in scrubs fuss over him.  As she talked, I could see his eyes rolling into the back of his head.  Something was definitely not right.  I gave my husband a worried look, and the nurse ran off to find a kit to check his blood sugar.  By this time, the nurse anesthesiologist had come in and was also clicking away at the computer, asking questions.  As Nurse A stuck his finger - not a peep was uttered from him.  Not even a movement.  A lump formed in my throat.  Something is very wrong.  

"Seventeen" she said aloud to nurse B, who looked up and asked her to repeat herself.  Like she had heard wrong.  "SEVENTEEN" - she said again, enunciating each syllable to make sure she heard correctly.  Thank GOD I didn't know what it should have been, because I would have gone into panic mode.  I was told, very promptly, to get Toby on the bed and get him undressed.  Scared and shaking, I did as I was told, as my husband looked on from the corner of the room.  4, 5, 6, 7....I stopped counting as scrubs and white coats flooded into our room. Toby, was not there.  His eyes were rolled into the back of his head.  He was breathing but he was not conscious.  Two different nurses, and 1 doctor each took the limbs that were left looking for a vein to start an IV.  I was squeezing his hand with all of my might, rubbing his head, and whispering in his ear that everything was going to be fine.  I kept glancing back at Parker, who had the same cold look as I did.  What was going on.  Why was this happening.  I remember asking the nurse what his blood sugar should be, and she didn't answer me.  The feeling of dread grew even more.  I looked up to the doorway and there was nurse c, holding what appeared to be a "crash kit".  She whispered quietly so I wouldn't hear...but I did..."Was his sugar really 17?", and the stone cold wide eyes from nurse D confirmed it.  

As Toby's tiny foot was stuck and an IV inserted, he didn't flinch.  He made no movement.  No squeal of pain.  That frightened stare he usually gave me before getting our routine blood draws...what I wouldn't give to see that right now.  To see some sign that he was there.  The doctor pushed in a syringe full of Glucose, and very slowly, I saw him again in his eyes.  The blue shown a little brighter, and I could tell he was looking back at me.  He still wasn't crying, or saying anything, but he was there. Back again.  I looked over again to my husband with a look that said, things are getting better, and for a brief moment the hopes that he was going to OK overshadowed the terror that had just ensued. They rechecked his blood sugar - 136.  Much Much Better.  

Over the next 2 hours, Toby slept on my chest.  Curled in a tiny ball, covered in a hospital sheet. I may have caused marks on him by how hard I was squeezing him.  An IV line hung from his limp foot, and every now and again, nurse a would check it and program something else in.  We were visited by the GI staff who told me as long as Toby remained stable, we would still go ahead with the procedure.  As it was explained to me by the many nurses - They see this all too often, with little ones who have to fast.  Little ones who are too young to bribe.  Little ones with feeding difficulties like our son.   In the future, if we have to do this again, Toby should be admitted the night before to be monitored.  Ummm, I'm pretty sure whether you agree or not, If he has to do this again, I'm camping out in the hospital lobby. 

In the darkness of the room, nurse a conversated with me and explained to me that she had heard my questions, but chose not to answer me.  She was too busy focusing on my son, and she didn't want me to know the answer.  I appreciate that more than she knows. 80 is a low sugar level.  At 60 they begin to worry.  At 40, immediate intervention is required.  17 is unheard of.  17 is very critical.  Thank God I didn't know this before.  In fact, our nurse in our recovery area said that in the 19 years she had been a nurse, she had NEVER seen a blood sugar that low.  

"Only you know your child best", nurse A continued.  "I'm so glad you said something wasn't right."  I rethink this statement and shutter. 

I may know my child best, yes, but I have no clue what I'M doing!!  What if I just thought he was sleeping normally and didn't say anything.  What could have happened??? He had been like this since the wee hours of the morning and I didn't think anything was wrong.  What would I have done If something terrible happened on the way to the babysitter. I wouldn't have known!  It would have been all my fault!!  I completely understand that saying, and I've heard it from numerous providers, but that puts a lot of pressure on us parents to be alert and on top of things.  Why can't our children have a little sensor on them, like my car when backing up, that beeps when they get too close to running into a theoretical wall?  Wouldn't life be so much easier? 

A few hours passed, Toby's blood sugar, which was being checked every 30 mins, had stabilized.  I told them this would be hard.  I told them he wouldn't eat the things they told me to give him.  I knew this would be nearly impossible.  I felt like they weren't listening.  

Because he already had an IV, the transition to the operating room table was a little easier this time.  Still asleep, I laid him down with his blanky, and he rolled onto his side like he does every night.  How peaceful this angel was. My husband and I were escorted out and we waited for 2 hours until the doctor was finished and met us back in the discussion room. 

Toby's results had shown the inflammation indicated with the labs.  We had a long conversation about his hypoglycemic episode that morning.  We wont let that ever happen again.  Now we know.  Because of all the madness, extra labs were drawn.  My son was stuck in every wrist, hand, ankle, foot, arm.  I stopped counting the bruises, and started taking pictures.  I was told to monitor them to make sure they didn't get worse, or hard.  This was critical and he needed to be rushed to the emergency room if that happened.  He slept in between us that night - something we never allow in our house. And that was alright with me.   

Four days later, I received a call from his GI nurse.  We needed to get the first available appointment with one of the the best Immunologists around.  Our GI doctor had already talked to him personally.  Toby's blood results showed more abnormalities this time.  This doctor was excellent, she said.  He explains things very well, and is very good with the patients.  After all of this hype, I was surprised when I couldn't find him in Immunology's directory on the Children's website - something I've grown accustomed to looking up for each new specialty we see.  

It all made sense when his scheduler called to book our appointment.  I was not at all prepared to hear where Dr. Excellent worked.  Not prepared in the least bit. 

Thank you for listening, 
Lindsey