He who believes is Strong; he who doubts is Weak

Thursday Friday Night 11:00pm 

I'm having a hard time recalling what day it is. It feels like just yesterday when we last stayed in a hospital room, in actuality, that stay was weeks ago.  I have just showered and had dinner, after Toby drifted off into sweet dreamland.  For some reason, I chose to get the premade Sushi tonight- Pizza and Coneys, though amazing, get to be a bit much when you have them for every meal.  Keeping the room dark to not wake my little angel, I used his Buzz Lightyear flashlight and rested it on the corner counter, lighting a small path for me to open my soy sauce. Wouldn't you know, as I looked up, this was the sight illuminated. 

I didn't hang my jewelry there, I guess Parker did.  But I sat and ate in the dark, looking at my matching bracelet and necklace lit up and sparkly.  It's a little peculiar that I wore this bracelet to our appointment Wednesday Morning.  

As I waited in worry for our procedure to be over, we walked over to the gift shop to buy puzzles and stickers, and I found it's match- a perfect necklace that could have been confused as its matching set. 

I bought it, and immediately put it on that day.  Now it hangs here, lit up.  Reminding me to have faith.  My Sushi now consumed, my fortune cookie read proudly - "He who believes is Strong; he who doubts is weak".  Thank you God for this precious gift. 

Wednesday 

"We have to rule out a brain tumor" 

I am numb. The words fell out of her mouth like any other phrase she says all day long - "Hello; Goodbye; Has anything changed since the last time you've been here??"  The radiology scheduling coordinator had called to review with us our instructions to prepare Toby for the Brain MRI he was scheduled to have on Wednesday, informing me her protocols and how we should fast him 8 hours before our appointment time.  Outside of the glaringly obvious worry of scanning your child's brain for a tumor - we now had the added worry of fasting him - something someone who has hypoglycemia should not take lightly. 

I had phoned Toby's endocrinologist and we had established a game plan to have Toby sedated via an IV, instead of the standard oral sedation they use on most kids.  This way, we would have access to his veins in the event we needed to push him more sugar, if his levels dipped too low.  They were comfortable with fasting 8 hours, even though I KNEW we would be delayed (because that's how things work in the world) and I KNEW something would go wrong (because we've never had ANYTHING happen just standard for us, that would be way too easy).  If Toby is sedated, we wont be able to see any signs that his sugar is dipping too low, and that worried me.  Regardless - this is a procedure that needed to be done - so I tried my best to squash the angry worry in the pit of my stomach, and move forward with our plan. 

Wednesday morning we dropped Lyla off at the babysitter and headed for Children's.  We had a 9am appointment for a 10 am MRI Scan, followed by a 1230 pm GI visit.  Toby's last bottle was ingested at 10pm the night before, and he hadn't had anything since then.  Unfortunately, he thought vomiting on the way there would be a splendid idea, so I crawled my big butt between the two front seats and cleaned him up, listening to him say "Ewwwww, grosssss" looking awkwardly at his messy blanky. 

As expected, we waited a while in the lobby.

And more in our "prep" room. 

We were going on 13 hours of fasting, and our glucose levels were dropping, when the decision was made from the Radiology team to switch him from oral sedation (Taking a medicine through the mouth and falling asleep) to General Anesthesia.  This means that he needed to be put to sleep by an anesthesiologist and a breathing tube inserted to control his breathing.  Toby would be hooked up to an IV after he was put to sleep, and we would give him glucose through that IV so his levels wouldn't drop any further.  While the image of Toby getting gassed from his last surgery here is an awful one etched in my  mind - I knew it was the safest option.  With his vomiting spells, the last thing we want is for him to be sedated and choke - a breathing tube would help prevent this.  

We were escorted to a small cold room, my son was forced on a mask, and I held him down as he fought his way into an unconscious dream. Only able to hold my tears long enough to walk out the door.  

An hour and a half passed, and we were reunited in the Radiology Recover area, Toby in a wretched mood, as expected. After some time there trying to relax, he was released in our care - his scratchy sore throat letting out moans of pain from the tube that was just removed.  We walked to our next appointment, and waited in GI for our doctor. Toby, just miserable, and wanting to go home. 

I knew our GI doctor wasn't going to be happy.  Toby was 10 days into a vomiting spell, vomiting at least once, if not more, each day.  His glucose levels had been fine, but I knew he wasn't getting enough nutrition when he can't keep it down. My intuition was right; confirmed when his measurements showed he grew 3/4 an inch in two weeks, but not enough weight. The growth hormone injections we give nightly obviously working, but we cannot have him getting taller without gaining weight.  It defeats the purpose. We made a heart wrenching decision to have an NG tube placed - this is the reason for our stay.  I will cover more about what this is, and why we need it soon - but I'm sure your wanting me to tell you the results of his brain scan. 

Thursday 10am 

We are at our endocrine appointment by 10 am on Thursday, having been released to go home Wednesday and return for our admission to get our feeding tube the next day.  Before we went to admitting, we had our earlier scheduled appointment to follow up on Toby's hormone shots and glucose checks, and get our results from the MRI. Our endocrinologist was a very kindly young doctor - he had met with and reviewed Toby's case with the physicians who treated him during our admission there a few weeks ago, and he was eager to meet us and learn more about our darling son. Our GH and Glucose checks were going as splendid as they could, we got the easy stuff over with first.  Next, he asked us to sit down and review the results of the MRI scan - he'd like to show us on the screen the pictures. 

Immediately my heart started racing.  If the scan was fine - he would have just said the MRI scan showed no abnormalities and left it at that.  Why would he need to show me something thats perfect?  Clearly, something is not right.  It wasn't. 

Slide by slide, he explained the parts of my son's brain we were viewing.  If you can picture the profile of Toby's face, and slices vertically down the side, each slice showing deeper into his skull moving towards between his eyes.  This spot, between the eyes, is where the pituitary gland sits, in a small cavern etched out in the bones of your skull.  If you remember, the pituitary gland is what controls the distribution of growth hormone.  They were looking for any explanation as to why it wasn't functioning properly.  As he pointed out spots in the picture, his finger stopped in a black space, and he said "This...This is where the pituitary gland is supposed to be, and as you can see, its empty".  At a loss for words, we let him continue.  Slide by slide we moved deeper through his brain, and a few pictures later, we were looking at a small white speck.  This, as its explained, is the back edge of the pituitary gland.  In a nutshell, Toby's gland was not formed correctly - there is really no front part, there's only a small back section.  This explains WHY he cannot produce an adequate amount of growth hormone.  

Your probably asking now, WHY is it deformed?  Just like I was.  Well, its not a tumor, thank God.  There are no other abnormalities in his brain other than this.  I am told this was something that happened when we was being formed in my womb.  A mutation that happened for an unknown reason. We could spend and exhaustive amount of time/resources/money performing tests to figure out the cause - but it wouldn't change the outcome.  It is what it is, and we already have the treatment in place to level out what his body naturally can't do.  There are other related issues we will have to monitor Toby for now, requiring additional hormone therapy later in life, but from what we can see, everything is treatable. 

Thursday 12pm

We've just left our endocrine appointment, learning our son has an almost absent Pituitary Gland, and are getting admitted to have our NG tube inserted.  We are getting this tube inserted because the first few months being on Growth Hormone are the most important to kick start Toby's growth.  Because he 1. Doesn't eat much and 2. Vomits what he does eat up - we need a way to make sure he gets an adequate amount of calories and nutrition in his system. Unfortunately - we have to go a very dramatic and traumatic route to ensure that happens.  I am terrified.  I know intellectually what this means.  I know that we have to shove a tube down my son's nose, down his throat and into his stomach.  I know he is wide awake when this happens. I know there are no pain meds given.  I know he is going to be terrified and tortured, in pain and agony.  I know I have no other choice, because as much as we try, we cannot get our boy on a healthy path on our own.  I am disheartened and sad.  I am panic stricken.  

Friday 10pm

I am putting my faith in God that he is protecting my son and comforting him while he dreams.  We are not going home.  Toby's vomiting has not stopped, even with his tube.  We can't leave until he hasn't vomited for a whole day.  Its been a while since he hasn't vomitied for a whole day. Please say a prayer with me that he holds it in.  My back hurts, my eyes hurt, we miss our daughter.  We just want to go home with our tails between our legs and get into some sort of routine with our new tubes and equipment.  We will get there, I am sure.  In no time we will be experts, not even noticing this new piece of my son's body.  Please help me get there.  I'll admit it, I'm scared. 

Thank you for listening, 
Lindsey 


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