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 


.  

I pray for God to make my boy understand

Down a long winding path, in a far, far away corner of the internet, exists a community of families with children just like mine.  I found them with the help of new friends, and this group serves as a sounding board, giving advice and reassurance when you feel like you are doing it wrong.  They help you understand, they console you, they lift you up, they teach you - and best yet, they help you to believe that it is not your fault.  They too have struggled with raising a child that does not grow, and they too have gone through all of the testing, the struggles and the pain. (Insert an uber emotion Lindsey metaphor here)  I feel like I've been on a deserted island and have finally walked far enough to find civilization - each of them landed here like myself, and each of them walking a long, hard journey for something better.  Making everyone there so eager to share their experience and make sure you feel you are not alone. We are all very alike in so many ways - What a precious gift God has given me.  I have needed this help for a long time - even more so in recent times. 

New Friends

Last week, we were graciously invited for a play date with our new friends, Lauren - the woman who originally reached out to me and helped us get to Toby's diagnosis so far - and her family. Lauren's son has RSS - a genetic growth disorder that Toby is currently being tested for. We talked for a few hours while our kids played together, and were immediately finishing each other sentences.  Our boys share almost every symptom together.  Not eating, not growing, HG injections, vomiting, hypoglycemia and glucose checks.  Even if Toby isn't diagnosed with RSS, it's a comforting and powerful feeling to have someone you can talk to who gets it.  As a parent - your job is to care for and nurture your children.  When you have a child that doesn't grow, you feel lousy and incompetent - they depend on you solely to live and thrive - and when they don't you can't help but blame yourself.  I don't have the words to explain the relief it is to know you are not alone, and it is not your fault.  I'm working hard to believe this each day, and Lauren and her family is making that within reach.   

As if new friends and comforting shoulders weren't enough, Lauren's son also relies on Pediasure like Toby, to survive.  Unlike my insurance, her insurance covers it - and sends her so much that they can't keep up with it.  Usually she donates the leftovers to a program which gifts it to other children in need - this time - she gave it to us.  Four cases, which would have cost us HUNDREDS of dollars - just given to us by this angel of a family.  Along with it, other supplies her insurance company covers that will help Toby as well.  Thank God for this precious gift - and hopefully life long friends.  

Mess Ups

Our week had been just OK.  Toby's vomiting has picked back up again - something I thought we might have been past after changing his diet.  We are now on day 6 of our vomit/clean up cycle.  I'm not sure whats worse - the constant cleaning or my lack of sleep.  Toby needs his glucose checked at 830 pm and if its not high enough, again a half hour later.  He's asleep by 930 and now that both kids are sleeping, I clean myself or the house.  It's either one or the other. (So, if you come over and my house is clean, stay a good distance away because its usually a sure bet I haven't showered.)  At 11 pm, once hes been sound asleep for a few hours, I give him his injection.  After spending the next 20 minutes coaxing him back to sleep,  I go to bed and hopefully am asleep by midnight.  

My 2am alarm clock sounds, and I usually hit the snooze a few times before making my dreaded walk into his room, to wake him up with another needle in his finger to check his blood sugar.  Between 5 and 6, he asks for a bottle, and shortly thereafter, my daughter wants one too.  Then they are up at 730, with one more finger stick to get the day going.  I am getting a good 5 hours of intermittent sleep each night, and its taking a toll on my mind, my patience and my intellect.   

 We've been able to struggle through the glucose checks - giving him stickers after each prick.  Now he holds his finger out and shuts his eyes hard because he knows its going to hurt.  He lets out a quick cry and asks if we are "Aw Done?", in a voice that shatters my heart everytime.  I quickly say yes, and the stickers come out, and in short time, he forgets it even happened.  I wish it were that easy for me. 

The injections have been much harder.  After our failed attempts at doing them while he's awake, we've tried a pattern of giving him his shot after he falls asleep.  The first few times, he would wake up crying and confused, and I would rub his hair and give him hugs until he wanted to fall back asleep.  But a few nights ago, I did something horrible. I had picked out his injection spot after checking my calendar, to make sure I wasn't repeating a spot I had just done.  Deciding on his right thigh, I reached into his crib and with one arm held his leg down, pinching his thigh, while the other hand held on to the pen with his medicine, ready to inject.  I guess I wasn't holding him down firm enough, because as I stuck the needle in, he immediately jerked his leg and screamed out in pain.  The needle having just tore a three inch long cut into his leg because of his quick movement, blood dripping out.  I was devastated.  How horrible it has to be to be woken up three times a night to get stuck, but my carelessness just caused a horrible cut on his leg, and it must have hurt like hell.  I got him out of bed and set him on the kitchen counter, taking a wet paper towel trying to stop the blood from oozing out.  He was inconsolable, as you can imagine. Angry cries, kicking and screaming.  I got some antibiotic ointment and a big band aid, and stuck it over his wound, then sat in his rocking chair in his dark bedroom, and let him cry on my shoulder.  I couldn't stop myself from sobbing.  I felt horrible. Here is my adorable tiny boy who depends on me to save him from the doctors and nurses, poking and stabbing, being his soft comforting arms that rescue him from his torture - and here I was, now the perpetrator.  I cried because I knew he didn't understand.  And it will be a long time until he will.  

We both sat in the dark, rocking and crying, and in a moment he stopped, lifted his head and looked at my face, lit by the soft light filtered in through the door to the hallway.  I could tell he was thoroughly confused by the sight of my tears, and it dawned on me that he had never seen me cry. The look of confusion in his eyes, I cried even more.  I just want him to understand that I have to do this to keep him safe, I just want him to understand that I don't want to.  And as if he was reading my thoughts, he shook his head saying the word NO - telling me not to cry.  Tears now falling from his eyes again, but I truly believe for a different reason.  He was crying for me now, not him.  I can't explain why I know this, I just do.  He laid his head back down on my shoulder, wrapped his tiny arms around me, and hugged me.  We stayed like this until he asked to be put back in bed.  Every time I think about this night, tears well up in my eyes.  I can't write about it or talk about it without feeling an enormous amount of guilt and pain.  I know its a culmination of all of the stress we've been under, the waiting and the frustration, and the lack of sleep.   

The past few nights have been better, no cuts to speak of, but I'm more nervous now when I walk in that it will happen again.  I hate that I have to do something every night I'll always be nervous about.  Butterflies fluttering around, I wish they would go away.  I know this is all very new, and I know that we will work out a routine in time.  It may be a year from now when he can fully understand the reasons why, and I have to be patient and thankful until that happens. I can't lose sight of the fact that our boy is getting treatment he needs to stay healthy, even if it means I have to be a bad guy for a few years until he's old enough to get it. I pray every night that God gives me the strength to continue, I pray for God to make my boy understand.  If you are praying for us, please pray that God's comforting arms embrace Toby in his times of fear, as his mother who was once the person to shield him from that pain, is now the one who is inflicting it.  And please pray for my sanity given the above, that I can forgive myself one day for causing my son so many tears.  

Thank you for listening, 
Lindsey 

Managing

"Toby, are you mad at me?"

I ask leaning over, holding his foot, while he plays games on the iPhone in the corner nook of the couch.   He pauses and looks up, wide blue eyes, the most innocent thing I've seen, and simply squeals - "No", with a quick shake of his head.  

It takes all of me not to immediately bust out crying, a result of the crazy emotions I've been having learning how to "torture" my son the correct way with pokes every night.  We had just finished our nightly routine of finger sticks and shots, and I was taking things a lot harder than he was, he made clear. This learning curve is a sharp one. I'm not doing everything right yet, but I'm trying so hard to work at it, even though my hands and thoughts still shake.

Distractions  

Friday afternoon, I met up with an old friend who has children Toby's age.  We decided for the mall, since the rain threatened a good time at the zoo.  Toby needed a distraction, and a little fun, after everything he's been through.  Soon we were off and running, playing and laughing - such a refreshing site.

Toby and Declan are both 2 years old.  Declan was born in October, Toby the April after.  Its always eye opening to see him playing with kids is age.  At the playground I'm always trying to guess and compare - when I know the birthday and compare the size, I feel an uneasy feeling in my gut.  Not for now, but for later, when Toby is older.  I envision him getting picked on, I envision him getting picked last, always.  I envision my worry growing instead of my son.  I have to check myself and focus on now, or I drive myself crazy.

Hey there good lookin- Room in there for two??

 Sure, I'll share my cheese with you!

Bottle Break

Unfortunately a dismal site when we got home - Packages stacked a the door - a harsh reality check.  Toby's Human Growth supply was delayed a few days, and I had two nights off from stabbing him.  Now it was unavoidable. 

Wha Wha Whaaaaaaaaa

While he is getting used to the finger sticks, holding his fingers out for me, and counting the numbers we see on the screen, he was not prepared for, nor appreciative of the shot.  We tried a suprise attack the first night, which didn't turn out good - Me not keeping the needle in long enough due to his squirming and watching half of the fluid run down his backside.  The second night we tried to explain to him what was happening - showing him the supplies and trying to go slowly - that didn't go well either.  Terrified fits on the kitchen counter.  I'm confident we'll work out a good routine - it will just take time, and a lot of my strenth (both figuratively and literally) until it all works out. His glucose levels have been within normal ranges - no need for emergency shots or supplies.  For this, I am thankful.

Look at how tiny this needle is!  Thank God!

Walk it off

Saturday we had our Gluten Free for Cincinnati Walk.  This was a fundraiser thought up from a Mom like me, whose son was diagnosed at 3 years old with Celiac Disease.  May is Celiac awareness month, and she envisioned a retreat where those afflicted with this autoimmune disease would have a venue to get together, share recipies and samples, and stories of support.  The walk had hopes of raising money to start having a yearly convention here - raising awareness about the disease and providing a weath of resources for families.

Go faster Mom

Look what we did!!!

Don't mind me, I'll just stay cute and quiet

Now, I don't blaime you, Celiac Disease is probably one of the lowest men on the totum pole in terms of charitable donations.  When there is so much worse in the medical community, its hard to swallow gifting or contributing for a disease which can be almost enitrely treated by a change in diet.  In the big scheme of life, things like this do not matter:

Unfortnately Toby has to eat the second cupcake not the first 

It's too bad we have to eat the ice cream on the right instead of the ice cream on the left...

I'm not trying to be annoying coy about our Celiac Diagnosis, I just want you to know, after everything we have been through, and everything going on around us, its become abudantly clear that I should not worry over a change in diet.  We have been managing this beyond well, and I just needed to cool my mom brain down long enough to get it.  I do now. Thank you for being my sounding board through our initial diagnosis. I look back and realize I was more worried than I should have been.  I should have known my resiliant son would have no problems.

That being said, it is comforting to know you have a group that understands what you are going through and can provide tips and tricks to succeeding in your new lifestyle.   If you are not personally affected by it, I'm not sure why you would care, but we do.  And I'm so thankful we walked.  We brought home all of these yummy samples!!! 

It was so nice that Toby could reach out and eat ANYTHING he saw!  We've spent alot of time checking labels and keeping an eagle eye watch on anything he puts in his mouth, to just get an hour to turn off that sensor was refreshing.

Cookies are my favorite!!!!!

Next Steps

Toby has a scheduled brain MRI next week.  I am told it is standard protocol to scan the brain for other possible abnormalities when they find that 1 thing ins't working there.  This is just a way to rule out any possible problems with his brain.  I am confident my sentence speaking, letter loving, color shouting boy is fine in that area, but I am comforted they are doing everything possible to make sure he is safe.  He needs to fast again and be sedated for this procedure, so fingers crossed and prayers it all goes smooth.  Another appointment after that will follow up in Endocrine - and we will meet back with our doctors to review his progress.

I want to thank everyone again for your support and uplifting prayers over this past week.  It was draining on us all, but now we are getting back into our routine, and hopefully soon our nightly injections will be as common as saying goodnight to the moon and stars. Thank you for sticking with me and my son, and Thank you for caring.

Thanks for Listening, 
Lindsey 








 

For Some Reason.....

For some reason, at an after Valentine's day sale at Kroger, I stocked up on icing.  I haven't used  icing in forever, I don't remember when.  But they were only 75 cents, and my son's birthday was coming up, and maybe I'll make cookies?  Even though I've never made cookies at home and decorated them.  For some reason, I thought I'd need 4 of these.

For some reason, I wandered into a random isle at the Home Depot, while there to pick up a new lighting fixture for our kitchen remodel.  This was a few weeks ago.  I saw a shelf of wall decals, and picked up this calendar, thinking the color and style would match my decor.  I didn't really have a need for it, or a spot to stick it, but I liked it, so I bought it. 

For some reason, 1 night last week, I opened the sleeve and carried the sticky calendar around the house, holding it up in spots trying to find a location to put it.  I had no idea what I was going to write on it, but everyone needs a calendar, right?  I haven't used a paper calendar in months, ever since Toby's vomiting has decreased.  All of my appointments and reminders are in my phone, so the one I had been using is stuffed under papers in my kitchen junk drawer, I presume. 

For some reason, I chose to stick this calendar directly outside my son's bedroom, on the hallway wall.  There is sat, with the word May on it, and nothing else.  With no plans for any other content.  I liked the way it looked. 

For some reason, I asked to stay longer.  This week, Toby's has been through hell and back. They gave us a choice to leave the hospital on Tuesday night, or stay for observation until we were comfortable.  I chose the latter, for some reason, even though I had no sleep and had to put back on my dirty clothes from Sunday, as I hadn't brought enough with me.    Wednesday morning we were greeted by the rounding team, who had new news for us.  Some of Toby's labs had come back with major abnormalities.  They were anxious to share with us this news, and a game plan to start regulating his system. 

His labs had shown that Toby was not producing an adequate amount of Human Growth Hormone.  This hormone is produced by the pituitary gland in the brain, and raises the levels of glucose in the body, as well as stimulating growth and reproduction of cells in our bodies. While undergoing his stress testing, on three different occasions when his GH levels should have been high, they were way to low.  When they should have been increasing to help his body carry glucose and distribute in during his low periods, it was dropping instead of rising.  He has been diagnosed with HGD - Human Growth Hormone Deficiency.  In addition, his stay concluded that Toby is hypoglycemic - his Third Diagnosis.  Hypoglycemia is the opposite of Diabetes.  While a diabetic has too much glucose in the body, and needs to take shots of Insulin to carry it away and store it, Toby has too little glucose in his body, his organs not working right to take it from it's stores and drive it to where it needs to go.  His HGH deficiency may be the reason Toby is hypoglycemic, or, worst case scenario, a Fourth Diagnosis, looming in the background, could be the primary factor of his confused body, actually causing the deficiency and hypoglycemia. 

This is where the genetic testing comes in, for syndromes that have symptoms of HGD and Hypoglycemia, as well a multitude of other internal and external signs that Toby exudes. Only time will tell, as our first genetic test will take 2 months to get the results.  And that is just the first. 

For some reason, we chose to stay, and by doing that, we were at the hospital when these results came in, and we were able to give Toby a safe amount of growth hormone to leave the hospital. Had we have not stayed, we would have had to go back.   

Big Changes

These two new diagnosis bring with them big changes for our family. Every night, until Toby is 18, we have to give him an injection of HGH.  Every night, 3 times a night, I have to prick his finger and test his glucose level to make sure he is not too low, requiring an intervention of juice. This is a big adjustment - I just learned what the word glucose meant 7 days ago, and now I'm having to give my 2 year old shots and finger pricks to regulate it every night. 

This - needles hopefully lasting me a month of testing. My trips to the pharmacy for Toby's Celiac medication, now $200 visits for testing supplies and glucagon pens - in case of emergencies.

This - a calendar I had no use for right outside his bedroom door, now exists as a quick way for me to document his results everyday.  A guide on when I should rotate his injection sites, making sure not to repeat the same spot so scar tissue doesn't develop. 

This - All of the extra icing, a stash for diaper bags, grandmas and babysitters, for scary times when Toby is too low and needs a quick shot of sugar. 

This - Old formula containers from Lyla's food, now Sharps containers instead of pretzel containers.   

My son smiles, even though every finger is dotted with tiny red dots. Bloody reminders of the bloody hell he's been through.  Each arm, hand, wrist, thigh, foot - speckled with small scabs, band aids marking each boo boo he has, holding them out for "isses" to make them feel better. 

We are working through these changes, slowly.  Last night, Parker left to go out of town, again. Why doesn't he just quit his job and find something at home?  Can't he find something  equivalent here?  Because he carries our insurance, and for us to switch now would be a HUGE cost.  By the first of May, we've already met our $4000 out of pocket max for the year.  We can't switch now, especially after the HGH has been prescribed - a daunting task for the insurance coordinators to work out, as its often not covered without a strenuous process.  

I was on my own for the first night, and it went surprisingly well.  Before he went to bed, I had to stick his finger twice, not getting enough blood with the first squeeze and erroring out the machine.  Damnit. My 2am alarm went off, and I quietly snuck into his bedroom for a reading.  Using his buzz lightyear flashlight we keep in his crib everynight, for some reason.  He awoke only after the worse was done, and rolled back over after a few whimpers.  I stayed awake for 2 more hours, my mind not turning off. We were lucky enough to still be at the hospital when I had to give my first HG injection, squeezing his tiny leg and puncturing his thigh.  Screams and squirming as Dad held him down.  The jury is still out for how tonight will go.  

For some reason I was compelled to write.  And for some reason a stranger felt compelled to comfort me.  That opened my eyes to a new possibility, that lead to a new appointment, and 2 brand new diagnoses.  They could possibly save my son's life.  

How you could not believe in GOD after all of this, I'm not sure.  

Thank you for listening, 

Lindsey 

Updates

Tuesday 3:00 pm 

I am in a much better place right now.  Some fog has lifted from the previous days, and I am able to see a little clearer, both the past and into the future.  Both of my boys are quietly sleeping, so I thought I would get caught up, not knowing how my days and nights will be when we get home, and I leave the comfort and safety of our nurses and doctors. 

As I started to mention before I forced myself to go to bed at 330 this morning, we had been filled in that Toby's original testing was not sufficient.  Remember me saying that the machine they use at the patient's bedside wasn't always accurate? Well, it wasn't this time.  In order to process the labs they needed to make a diagnosis for our son, his levels needed to be below 45.  When we checked them bedside, it read 31, but must have been a malfunction,  because when the lab finally called back to confirm - his level was actually 50.  Too High to be of any value.  Remember I told you I panicked at the site of Toby's eyes rolling? The medical team did what they felt they had to do to keep Toby safe - which was continue the process without confirmation and inject him with medicine that would stabilize his levels, and whip him back into shape.  Well, if they would have waited a while longer, we would have known it was too soon.  I feel a pang of guilt at this, that its my fault I freaked out too early, and if I just would have stayed quiet, the first go round would have worked out.  But, I am reassured by my nurses who are also mothers - they would have done the same thing - and this quiets my internal judging.  

The next game plan was to watch Toby through the night to see if his levels started to fall again.  If they did, we would try to not intervene (meaning no feeding/juice/etc.) until we saw how low they dipped again.  Not a formal fast, rather, a responsive fast - if his body started into a downward spiral again.  He had drank his last Pediasure by 9pm, and was sleeping soundly by 10.  Up again through the night, sticking his finger and checking his urine, we watched as his levels started to drop.  By 6am they were in the 60's, far from where they started before bed. After a quick consult with the doctors, we decided we would let his body continue to naturally do what it wanted, ie. wreak havoc, and not intervene until his levels were under 45 - a feeble attempt to redo our mess ups from the last time. 

At 9am, he was 49.  Only 12 hours of no food/bottle, something that happens ALL the time in our house, he was at a dangerously low glucose level.  Do you ever watch those house flipping shows on HGTV, and the carpenter dramatically takes a sledgehammer or saw to a wall, only to see right behind it, inches away, was an incorrectly placed gas line.  One little spark could have blown everyone up?  And the family gets a second to digest all of the terrible things that could have happened to them, and the look of relief on their faces to know someone who knows what they are doing is here to help and fix it?  Well, that's how this was, only it was about my son's life.  To think that for years?? he has been at risk for something terrible to happen, for one little spark to ignite a storm in his body, and we've just squeaked by all this time?  It chills me to the bone.  I am grateful for the fast actions of his doctors, and even though I was repulsed at the thought of this whole situation before coming, I'm so glad we did. 

Toby was very uncomfortable, very ill and irritable.  Nothing I could say would calm him.  He would ask to be held and then ask to be put down.  He wanted me, then Parker.  He was disoriented, angry and scared all at once. By 10am, his bedside reading was at 42, and his nurse drew a sample to send to the lab for confirmation.  No way were we going to mess it up this time.  They stayed very near and kept checking with the lab to get the result.  Wouldn't you know, their system was down, and what normally would take minutes, now took ALOT longer because it was being done manually.  Just our luck. A sick feeling in my stomach.  Frequent trips to the bathroom to flush my worries and butterflies down the drain. 

A team of 3 nurses stood and waited, all of our supplies ready to draw blood.  Emergency sugar was in place in the event they didn't call back "in time". When it took longer than we wanted to wait, the respiratory team stepped in with a fancy schmancy device that was a bit more accurate than the other bedside device.  This one needed to stick his finger deeper to collect more blood.  I can't tell you how many times he's been stuck - its been well over 50 - and each time, he screams and buries his head in my arm. Misery. 

When that reading came back at 42, the lab called back from their manual process with a 40, and we were given the green light to collect the labs.  It had been decided that we would try to give him juice and a bottle to raise his levels instead of medicine - to see how quickly that would work and what type of effect it had.  I had a bottle on standby, and the nurse went to draw the blood, only for it to be empty.  A crushing blow, just when I thought the worst was over, it wasn't. A few more tries with nothing coming out of his tiny arm, then again on his other IV, with the same empty results.  Toby, terrified and miserable, just wanted to eat and to be left alone. The VAT was called again, and they were ordered to rush down to draw his blood.  Another stick, another helpless scream on the way down the hall. 

With three nurses holding him down, myself at his head, his father watching from the corner and the VAT nurse at his tiny foot searching for his vein, Toby fought as hard as his little, depleted body could fight.  Nothing I could say or do would calm him, so I just stopped and quietly rubbed his head, helpless again. Soon he was stuck again, a lab tube filled and sealed with his patient label.  Just when the green light was ordered, I gave him a bottle and he chugged down half in a few minutes, not being able to swallow the liquid gold fast enough.  I had asked, since neither IV was working great, that one of them be removed so his tiny hand could be free.  They agreed.  Toby still in distress, but somewhat more content with 4 ozs of bottle in him, he cried as the nurses undressed the IV from his hand.  Blood gushed everywhere when they removed it, a shock to all of us considering the lack of it coming out upon request.  And then, more chaos.  As if we all hadn't gone through enough, Toby started vomiting.  Pediasure 2 minutes old from the bottle, gurgling back up and out, all over himself, his bed and his nurse.  They quickly turned him to his side so he wouldn't choke, and Toby continued to empty his stomach until every last drop was out.  The inner fight he has with his systems saddens and sickens me all at once. Dealing with the blood from his absent IV and his vomit, the 5 of us were working quickly to undress, clean up, and bandage my little boy.  The charge nurse had run to get and IV with glucose, as obviously getting his sugar back up the old fashioned way wasn't going to work.  It was quickly attached and as soon as it entered his system, he started to perk up. Now sitting on my lap, his frowns turned to straight faces.  His straight faces to smiles.  Then a request for a pretzel, then a cookie. And slowly, his positivity out-shown and he was back to being a happy little boy again. A stressful 180 for everyone involved.

You wouldn't have known Toby didn't like to eat when his gluten free pizza arrived, eating at least 10 bites of it - something he NEVER does.  His hunger not matching how overjoyed he was at the taste of this delectable dish. We were better, happy, smiling and full.  Its been 2 days since we last saw that. 

Still hooked to our IV - we walked around - soaking up the oooohhhs and awwwws from everyone who saw him.  Toby saying Hi and Bye to folks like he was a politician.  Such a charmer.  I'm sure if he knew the concept of shaking hands, it would be his go-to move.  We met again with the doctor and made a plan that consists of staying overnight again to be monitored, and hopefully if that all works fine, going home tomorrow.  Grandmas and grandpas making plans to stop by for quick visits - a way for them to soak up much needed Toby smiles. A way for me to snuggle my daughter.  Win Win. 

So for now, I am going to try and shower before they get up.  I probably have every body fluid on me somewhere, and I haven't even brushed my teeth today.  Straight, Hot, Mess.  Thank you, Thank you, Thank you for thinking about us.  Pray that all stays on track, and we are back home tomorrow.  We love you all. 

Thanks for Listening, 
Lindsey 

Admissions

Tuesday Morning 12:41am. 

We have been packaged up, tucked inside a neat ball, and have been catapulted in a sling shot to some far away place.  I do not understand the language here, and nothing I've seen is familiar to me.  I'm having a hard time comforting my son, because I don't know what to say to calm him, because no one knows what to say to calm me. Our journey so far, we've been traveling by bus. Peering out the window, shouting out the name, colors and shapes of things we know as we commute along.  Making frequent stops to get out, and learn something new, in a new place.  But this week, we've been rocketed into this strange land, and I'm having a very hard time finding my way back to something I can recognize. 

I sit by the glow of the computer, or the machines, I can't tell - and I have to type to get out my thoughts, because I can't sleep while they nag me. I know you're all worried with me, and I'll try update you as best I know how.  To give my back a break from this concrete bed they have me sleeping on. 

In my last entry I shared with you the results of our meeting with Genetics.  We were excited to begin moving forward with genetic testing, something I feel will eventually, hopefully, lead us to some sort of treatable diagnosis for my son.  I also shared with you his concern over Toby's Hypoglycemic episode as the result of fasting for his last colonoscopy.  If you didn't read about it, you can find out what happened here:The story of his first hypoglycemic episode

I thought, we would re-board our bus, and make another stop in Endocrine to commence with the usual visit with the plebotomist - scream, poke, scream, siphon, scream, band aid, stomp away. But I received a call two days later, saying we needed to be admitted as soon as possible, as the Genetics doctor and the Endocrine doctor hashed out his case, they didn't feel we should wait.  Sunday they said, be there at 4.  Mother's Day. I had a day to change plans, find childcare for Lyla - who I haven't seen since Sunday Morning. My eyes now stinging, nose running while I type.  I know she is safe and happy, but I miss her face. 

These past few days have been challenging to say the least.  Toby arrived blissfully unaware about what was about to commence.  

I'll walk on my own, thank you very much

Sunday Evening was going well.  Toby got comfortable in his room - books, trains, toys strewn about his crib.  Bubble Guppies on repeat in the DVD player.  All of the gluten free food he could ever want.  I'm sure he maybe thought, for a brief moment, we were on a vacation.  He was allowed to eat a meal (or a Toby size meal of 6 macaroni and cheese noodles) and drink a delicious, luxurious Vanilla Pediasure before bed. 

And then, an abrupt halt to all of the niceties, as a nurse from the VAT (Vascular Access Team) arrived to start his IV.  These glorious nurses run around the hospital sticking children who aren't easy. They have horrible jobs, and they are the best ever.  I recognized the woman from when I worked here at CCHMC.  I spent 8 years here (2002-2010), 5 in the emergency room and 3 in IT before leaving to broaden my horizons.  I loved working here, and it's pretty evident most others do as well, seeing all of the familiar faces from the time we shared here. We briefly caught up as I explained to her the complexities of Toby's tiny vascular system - sharing with her the experiences from our journey, in hopes to avoid any undue pain.  We made a game plan, and it was executed without any trouble - except for the screaming cries of pain from my son.  Our line was in and we were settled for the night, being warned that a second line was imminent if they could not draw blood back out of the IV throughout the night. 

He thought this lever to adjust the bed was a microphone, and kept talking into it like on his cash register at home. Hilarious. 

 And then, he slept. 

Why are we here?

I'm sorry, I haven't even told you what we are doing here.  I've been awake doing some reading, because most everything everyone has said to me has been noise.  I can hear them speaking, but I can't focus on listening to the words they are saying, and I feel lost and confused when they leave, even though I've just told them I understand and have no questions.  Weird, but unavoidable in times like these.  Here is what I've read that made me understand what they were saying:

Glucose is a simple sugar that provides energy to all of the cells in your body. The cells take in glucose from the blood and break it down for energy (some cells, like brain cells and red blood cells, rely solely on glucose for fuel). The glucose in the blood comes from the food that you eat.

When you eat food, glucose gets absorbed from your intestines and distributed by the bloodstream to all of the cells in your body. Your body tries to keep a constant supply of glucose for your cells by maintaining a constant glucose concentration in your blood -- otherwise, your cells would have more than enough glucose right after a meal and starve in between meals and overnight. So, when you have an oversupply of glucose, your body stores the excess in the liver and muscles by making glycogen, long chains of glucose. When glucose is in short supply, your body sends glucose from stored glycogen and/or stimulates you to eat food. The key is to maintain a constant blood-glucose level. To maintain a constant blood-glucose level, your body relies on two hormones produced in the pancreas that have opposite actions: insulin and glucagon.

Insulin and glucagon have opposite effects on liver and other tissues for controlling blood-glucose level. Insulin is made and secreted by cells in the pancreas. Insulin stores nutrients right after a meal by reducing the concentrations of glucose in the bloodstream. (Lindsey's version - Insulin is the carpool that stops at your organs after you eat, and swoops up, rations out, if you will,  all of the leftover glucose that isn't absorbed, and takes it home)

So, what happens when you do not eat? In times of fasting, your pancreas releases glucagon so that your body can produce glucose. Glucagon is another protein hormone that is made and secreted by the pancreas. Glucagon acts on the same cells as insulin, but has the opposite effects. In contrast to insulin, glucagon transports glucose from stores inside your body and increases the concentrations of glucose in the bloodstream -- otherwise, your blood glucose would fall to dangerously low levels. (Lindsey's version - Glucagon is the carpool that picks up all of the glucose when their alarm goes off and they have to go to work for the day, transporting them and dropping them off at the work site.) 

So how does your body know when to secrete glucagon or insulin? Normally, the levels of insulin and glucagon are counter-balanced in the bloodstream. For example, just after you eat a meal, your body is ready to receive the glucose absorbed from the food. The presence of these substances in the intestine stimulates the pancreas to release insulin into the blood and inhibit it from secreting glucagon. The levels of insulin in the blood begin to rise and act on cells (particularly liver, fat and muscle) to absorb the incoming molecules of glucose. This action of insulin prevents the blood-glucose concentration from substantially increasing in the bloodstream. (Lindsey's Version - Your body will know when to send the carpool to take the glucose home, so that all of the little guys aren't standing around making a mess, getting into trouble because they have no work to do).  In this way, your body maintains a steady blood-glucose concentration in particular.

In contrast, when you are between meals or sleeping, your body is essentially starving. (Lindsey's Version - Uh, somebody better clock in here soon or you'lllllll be sorry) 

Your cells need supplies of glucose from the blood in order to keep going. During these times, slight drops in blood-sugar levels stimulate glucagon secretion from the pancreas and inhibit insulin secretion. 
(Lindsey's Version - The working bell dings and the Insulin carpool driver clocks out, while the Glucagon carpool driver clocks in and gets to work counting the heads of the little glucoses to make sure they're all aboard and ready to work)

Blood-glucagon levels rise. Glucagon acts on liver, muscle and kidney tissue to mobilize glucose from glycogen or to make glucose that gets released into the blood. This action prevents the blood-glucose concentration from falling drastically. This interplay between insulin and glucagon secretions throughout the day help to keep your blood-glucose concentration constant, staying at about 90 mg per 100 ml of blood .(Lindsey's Version - There is a constant highway of little glucose carpools going on in your body to make sure you don't crash). 

Ok I know that was long, but there really wasn't a quick way to explain it.  And it took me HOURS to dumb it down enough so I could understand it, so, hopefully, this cliff notes version will do.  Now, back to the question, why are we here? 

Toby's body has a hard time working out when to send which carpool - as seen and documented by his episode of having a blood glucose level of 17, when it should range between 80 and 100.  Low levels of glucose can be a terrible thing - ranging from mild discomfort to full blown seizures, and even death.  Because his last incident was so well documented in the system, the cause for concern that this could happen again was great enough that he had to be brought in for Glucose Challenge Testing.  This is, as you can deduct, a way for them to medically supervise what happens to Toby's tiny body when its not acting the way it should.  Meaning, his glucose levels fall dangerously low, and we can clearly see something in his insides aren't doing the job.  The goal for this visit, is to find out WHY they aren't doing their job. 

If we were in a classroom, now would be the time I would ask for questions. And also, I would have drawn pictures but it's too dark in here for me to see. Unfortunately, I have to hope I explained it well enough so that your head isn't spinning, as mine has been all week. (If it is, just read through that one more time, slowly, and hopefully that will do the trick. It seems to work for me that way). 

And what happened next?

The challenge was to starve Toby's body of glucose (Ie. Fast him) to see if/how quickly the glucagon carpool picks up the workers and gets there where they need to be.  His car has a history of flat tires, and mechanical breakdowns. We fasted from 9pm to Noonish before anything "concerning" started happening.  He was down to 52, low, but not at the 45 mile marker he needed to be at to draw labs for the test. 

You know that IV we placed?  Yeah, it stopped drawing blood by the wee hours of the morning, so we had to have another team come in with an ultrasound machine and start a line in his other arm that could provide us with his blood.  It's really important the medical team has access to his veins because when the S*^% hits the fan, they have to work quickly to siphon what they need and then give him what HE needs to get better.  This second IV was not as easy as the first, and I wont go into details but this was the only time so far (I'm not gone yet) in his stay where I felt like I wasn't being listened to.  But I can't dwell on that and I have to forget about it or I will just be grumpy.  I can fill you in later so I don't get in a fowl mood again. 

After this line was placed in his arm, we all felt much better about access to Toby's bloodstream, and the day commenced as we watched his glucose levels fall.  Now you can imagine after having been through what we went through already, to be told we have to do it again, on purpose, is a little alarming.  But I was promised that they do this all the time, and that they wouldn't let his levels get anywhere near 17.  Resources were always with us, the whole time. 45 was our target.  Once he hit 45, they needed to confirm it with the lab, draw 5 tubes of blood to send off, and then we would pump him back up with fancy-schmancy-new-car carpools of glucagon to get this system back in order.   Unfortunately, it didn't happen quite as direct as that. 

The nurses and I had it down to a science.  Every few hours we were Toby's unfortunate pit crew.  Alarm goes off, vitals checked, finger stuck, IV's flushed, diaper changed, flipped, flopped and back in bed.  If we would have made sounds, they would have sounded like the buzzes when the car in first place's tires are changed - warp speed. Levels had been normal most of the night and started drifting down in the morning. A mere 30 minutes after his 52 level at 1pm, he was at 31, just like that.  The handheld device flashing, exclamation points in the system. Parker and I, shooting worried looks at each other.  31 is not so far from 17.  We know what happens at 17.  I don't want to go back to that place. Ever. Again.  And just like that, a small swarm of staff, jumping up, gathering tubes and supplies, drawing some blood, and setting up a pile of tools on the table.  Mom and Dad, worried by his bedside, running fingers through his sweaty hair as he lay miserable in the bed. 

But, no one came running back in.  And I started to panic.  Because I kept thinking he was going back to that place I didn't want to see again, and I don't think I can take it.  Our nurses, stopping back into say that they sent his sample to the lab, who have to confirm the level before they draw their critical labs, as sometimes these handheld devices aren't always accurate. They are sitting right outside my door when it happens, and his eyes roll into the back of his head, and I yell at my husband to go get them.  I'm panicking and telling Toby to please stay awake, when they come running back, flipping on the bright lights, yanking him back into where he was, and the terror that he felt.  With Toby crying and squirming, the nurses didn't wait to hear back confirmation, they just took the blood from one of Toby's IVs and injected his leg with a shot of glucagon.  He's back in my arms, after a few minutes fighting, and retested at over 80. Exhausted from lack of sleep and lack of optimism, everyone, heads down. 

Not out of the woods.....

I thought we were done.  I thought we had been through the worst and we would get back up to our normal levels and be sent home, happy to lay in our own beds and see our slobbery baby girl.  But it didn't work out that way.  Toby's levels had been fine, as they were being checked at 5, 10, 20, 30 minutes after this incident.  He got to drink a bottle, and I think that mixed with his energy shot had him bonkers - as he was running up and down the halls like mad man, disheveled hair blowing in the wind.  We were visited by some old co-workers, and Toby was quick to impress them with his letter/number skills on the hallway keyboard.  

We made a trip to the toddler room and made new friends to play with.  All while waiting for our formal discharge.  

After a while of no nap Toby, we thought it'd be best to try to lay him down.  Before we got him down, he vomited, a common side effect from the medicine he was given.  After a quick clean up, he didn't fight it, and laid down to rest.  

Parker and I, shutting our eyes for just a few minutes when a knock at the door brought us back from dreamland and into the reality of where we were again.  This was a nurse educator, explaining to us that we would have to start monitoring Toby's glucose levels at home, showing us our testing kit and supplies, and a myriad of numbers, and levels, and emergency shots. Slightly overwhelming, but I understand its for his safety. 

It was right after this talk that we noticed something didn't look right in our sleeping son's face. His eyes half open and glazed, not usual for him.  While we knew it wasn't right, we didn't freak out right away, we gently tried to stir him, thinking his eyes would pop open and he would roll over into normalcy.  But, they didn't.  And again our exchange of fear was evident.  A little rougher, we shook him, and he did open his eyes, but not in the way I wanted.  Not with the annoying leave-me-alone-I'm-sleeping look.  This was one of unawareness, I wasn't even standing there.  We called for the nurse and she came into check his level.  Back in the 40s. She, running out to get juice, while I stopped and cried. 

I hadn't cried this whole time - usually reserving it for a car ride by myself, or the shower. But I couldn't hold it in.  All this time at home we've gone not checking his levels.  All this time he could have been in danger.  What would have happened?  What would I have done if something had happened? What if that nurse hadn't have knocked on the door, and we all would have slept through.....???? 

Toby off in an unconscious dream, hopefully thinking about Thomas and Police Cars and Firetrucks.  While I'm leaning over his cold bed rails, sobbing, that I can't protect my son. Sobbing because I'm tired and scared, confused and helpless.  Sobbing because I knew we weren't going home now. Tears flowing at the thought of how much distress my boy is in, and how the thought of continuing this charade for much longer seems completely overwhelming. Parker rubbing my back and our son's legs, simultaneously, being a rock for both of us.  

Because Toby was out of it, I had to inject grape juice in his mouth with a syringe and we convinced him to drink some pediasure, which helped bring him back from his too peaceful sleep.  His levels were rechecked and back in the 80's and we all calmed down, and went for a walk. We stopped and got him an apple, and headed outside for a picnic and some fresh air. 

It is now almost 330 am.  I have been stopped off an on for glucose checks and IV flushes.  I have so much more to tell you but I don't have the energy right now, but just know, we are starting all over again.  I can explain in more detail later, but the test, it didn't work right. And now we have to redo it.  So please please, if you pray, please pray that Toby can deal with this misery one more day.  Please pray for his comfort and for ours.  I know I have asked a lot of you, and I am so grateful you are here to listen and support. I'm so thankful to our family and inner support system for taking such good care of us, and my daughter who can't stay with us.  I will be sure to fill you all in, but I'm going to try to sleep. 

Thank you for listening, 
Lindsey