High Blood Sugar vs The Tooth Fairy

  Last night was stressful.

At 10:30, Yvette, my Anxiety Monster decided to claw at the insides of my brain. Yes, I have named my anxiety. She is cruel and can pop up for any reason at any time of the day or night.

  Once Yvette prevented me from leaving the house because I got so worked up over holiday traffic on Airline Dr that I decided something terrible would happen if I was to attempt a shopping trip. So instead I laid in bed for an hour and cried about everything that was wrong with my life.

Yvette is a terrible drag.

  Anyway, Yvette started to freak out about Ryan's blood sugar. It had been high at lunch but not so bad before dinner. I even checked his ketones when he got home from school and they were negative.

 Normally, either the husband or I would check him around two in the morning just to be sure that everything was ok while he slept. We do this about three times a week as instructed by the PICU doctors and almost every child diabetes book I've read.

But since Yvette insisted, I checked him at 10:30.

It was 399.

For those that don't know, a normal range for a child Ryan's age is 80-120. He hasn't really been in the normal range often since leaving the hospital and I hope to resolve this issue once we visit the pediatric endocrinologist on Thursday afternoon. That being said, 399 is still very high.

So Yvette fist pumped in victory and I tried not to panic.

I woke him up and gave him water, persuaded him to use the bathroom, and then 20 minutes later checked him again.

386.

I gave him more water, paced around the house, and played a Facebook game for  20 more minutes before another finger prick.

370.

At some point during the water drinking and the blood checking I thought about the fact that Ryan had lost a tooth that morning.

As most parents and former children know, losing a tooth is huge to a kid and their prime source of income. It's a big deal.

Ryan had lost his tooth...literally. We have no idea where the little chiclet ended up. My guess is that he swallowed it either in his sleep or with breakfast. I told him it was no big deal, we would write a note explaining the situation to the Tooth Fairy and surely everything would be fine.

So as Ryan lay in bed with sore fingers and a full belly of water, I wrote a letter and stuck it into his tooth pillow after making sure my words suited him. He is a very lax editor and agreed that what I wrote down was good enough. Probably because he can't really read.

  After realizing that his sugar was steadily dropping and remembering the Tooth Fairy letter, Yvette and I decided it would be ok to go to bed. And by go to bed I mean lay in bed and stare at the ceiling for a while.

  Eventually I did fall asleep just to wake up late the next morning. I rushed around trying to get Ryan's insulin injections done, his breakfast in front of him, his school uniform on straight, teeth and hair brushed, shoes on his feet (can't forget those shoes),  and make myself presentable enough to drop him off at school without all the teachers talking about me after I left.

As I was brushing my teeth it hit me. I had forgotten to put money in the tooth pillow.

  Luckily, Ryan never remembers to check his pillow the night after a lost tooth and since he hadn't mentioned it I knew that it had slipped his mind this time as well.

  I should have been a Navy Seal... or a spy......... or Jason Bourne.

I snuck into my wallet, found a buck, crept into his room and replaced the letter with the dollar bill, tucking the letter in the back pocket of my jeans. As I was in his room I called to him, "Hey, Ry...have you checked your tooth pillow yet?"

He excitedly ran into his room and looked in the pillow, pulling out the money that I had placed inside seconds before and looked up at me with an expression of sheer amazement.

It's going to suck when he finds out that I'm the fairy but hopefully he will one day appreciate the super stealth skills I have genetically passed on to him when he has his own children to deceive with magical winged tooth thieves.

To prevent my mother from calling me and saying WHY DIDN'T YOU CALL ME?! HOW WAS HE THIS MORNING?!...I am happy to report that his sugar was 190 this morning, which is on the low end of the spectrum for Ryan at this point. And mom, I didn't call you at 11:30 at night because despite what Yvette says... I GOT THIS...probably.

Ry was happy, and bright eyed, and had a great appetite at breakfast. He complained about the impending nap time at school (as usual) and decided he would rather let his snack that day be a surprise. He informed me that I should refrain from telling him what it was only to later break and request that I spill the beans. It was chips, sugar free cookies, and water in case you were curious. (1 bag of chips @ 15g carbs + 3 Cookies @15g carbs = 2 carbs)

  I was in such a rush to get him to school on time that I nearly backed over a guy walking on the sidewalk in front of my house. I almost never run people over in my drive way. Other than that, the tooth fairy mishap, and the insulin injections it could have been a normal school morning of any kid, anywhere, in any house.

That is the goal. Keep it normal. Don't let them see you sweat.

I GOT THIS....probably.


Ps. The husband was there during Yvette's and my mutual freak out and assisted as much as I would let him. He has learned after nearly 10 years of marriage that I need to take care of things myself in some cases to ease the stress. I needed to see the numbers for myself, do the checks myself, and give the water myself to reassure my warped anxiety rattled brain that I have done everything I can do short of wizardry to help the situation. I'm weird. I accept it.

My little snaggle tooth boy.

Wilford Brimley Is Still Funny

I love to laugh. Usually, it's about something totally inappropriate. That's just my weird, twisted humor. My husband is similar in that he also loves a good dirty joke or a non PC observation.

The other night while we were talking about all this diabetes mess he said, "Do you think this happened because we laughed at Wilford Brimley?"

I honestly didn't know what to say. But I did laugh. I couldn't help it.

 Eventually I told him that No, I did not think Mr. Brimley had anything to do with this. I'm still not sure if he was being serious or not. I guess in times of tragedy you try and find ANY explanation even if it means pinning our son's diabetes on the Quaker Oats man.

My reason for writing this post is to assure people that I have not lost my sense of humor during the past few weeks. In fact, at times I've had to cling to it in order not to go completely bonkers.

So don't get all PC on me and feel like you can't say certain things or laugh at internet memes.

I know that nobody is actually laughing at the disease or the issues it causes. I know that nobody is laughing about my son being diagnosed or any child diagnosed for that matter. I can separate all of that in my mind easily...probably because I laugh at myself and my problems on a regular basis.

Wilford Brimley is still funny. I promise.

I'll Clean My Room When My Diabetes Is Gone.

  I took Ryan back to school today.

  It was really hard to drive out of that parking lot...much harder than it was the first day but I didn't cry...as much.

  We are very lucky to have so many kind, helpful, and knowledgable people at Ryan's school to help us through this nerve wrecking time. I felt as comfortable as I could possibly feel leaving him there in their capable and understanding hands.

That doesn't mean that I'm not scared because I am...I think I always will be when he isn't right by my side where I can watch over him myself.
 
  I packed him his own snack today. Usually, every kid gets a snack day and their parents buy for the whole class. Since there is no way to know what food will be brought into the classroom I will have to send him with his own separate snack each day to make sure she gets the right about of carbs. I hope once we see the pediatric endocrinologist that this will change but really...I don't know.

For the rest of this week he will only stay at school until just before lunch. Then I will pick him up and bring him back home, check his blood sugar, give him his injection, and feed him. Next week he will stay full time and I will go up to the school to take care of his needs before he eats.

Thankfully, Ryan's OT is extremely caring and wants to help us out anyway that she can. Her own son (who is now a grown man) has type 1 so she is fully aware of what we are going through. Ryan will be able to eat lunch in her classroom for now, until I feel comfortable enough to let him eat lunch with the whole class in the cafeteria. I am worried that he will get distracted and not eat all the things he needs to after his insulin shot.

In lighter, more humorous news, Ryan has discovered that he can use diabetes as an excuse for just about anything. Not that it works on us but he still tries. I asked him to throw away his trash and he told me that, "He couldn't do that because he has diabetes."

He also informed his father and I that he would clean his room when his diabetes was gone. This made me laugh and broke my heart at the same time. He understands that he will have this for a long, long time but to a 6 year old a long time could mean a week.

I do have faith that there will be a cure one day but I don't like to mention that to Ryan just yet. He needs to understand that this, for the mean time, is forever.

His attempts at diabetes manipulation tactics does make me smile though because it's what a child would do...and he is still just a kid. He hasn't lost that and I am thankful because a diagnosis like this has the potential to steal away a part of that innocence and child-like personality.

I want desperately to keep that little boy wonder and excitement for life intact. I refuse to let diabetes darken his childhood.

When it is time for his sugar checks, Ryan repeats a mantra that he came up with on his own over and over and I couldn't agree with it more.

Ryan is a brave boy. Ryan is a brave boy. Ryan is the bravest boy in the world.

What the hell just happened?

  My son, Ryan, was diagnosed with type one diabetes five days ago.

  Just writing that out is hard to do right now.

  I'm not in denial. I know what is going on and what has to be done now to keep him healthy (for the most part). But damn...What the hell just happened?
  "It's just allergies. That's what is wrong with him," I said a week ago. I took him to an urgent care type place last Saturday and they sent him home with antibiotics for a sinus infection. By Monday (which was Labor Day) I knew it was something more but never, never, never in my wildest imagination could I have guessed that my child was diabetic.

That was something that happened to other people's kids.

At 3:00AM on Tuesday morning I called his dr's office and spoke to the on call nurse. I told her what was happening and asked if I should go to the ER or wait until morning to make a regular dr appointment. She suggested I should just wait. So that's what I did...even though something in my gut told me to go to the hospital.
  A medical professional was telling me to just make an appointment, to wait. I have a tendency to over react and I have high anxiety that I take medication for daily so sometimes I depend on other people to keep me on track and tell me HEY, WEIRDO STOP FREAKING OUT!

I might not ever forgive myself for ignoring that instinct...that ingrained mother thing that was telling me that this was way worse than any infection.

My pediatrician's office opens at 7:30 I was there by 7:50.
After he had blood drawn for labs we went home to await results.

He was miserable, so very thin, and extremely lethargic. When I close my eyes at night that is what I see. My poor child, eyes dull and sunken in, rib cage and pelvic bones jutting out, pale gray tone to his skin...and I have to open my eyes again to rid myself of the image. It might be there forever...at this point I don't know. I hope not. I don't want to be haunted.

The call came around 11:30AM.

 "He is diabetic. You need to go to the ER. Pack a bag and go now."

I couldn't believe it. I was expecting, at worst, dehydration and a 24 hour hospital stay to administer fluids.

  I'm not even sure what I said on the phone to that nurse. I know I cried. I know I immediately went into full on panic mode. I know I threw random things into a bag, told my husband, who was thankfully home early from work, what was going on as best as I could, and we somehow got Ryan into the car.

We were advised by Ryan's Dr to go to LSU medical center. Yeah, it's in a horrible part of town and the ER overloaded with people that have issues ranging from stab wounds to the flu but that was where I was told the best doctor for this was located. They have a pediatric endocrinologist.

Fine.

I wanted to be at the best place for my son regardless of the sketchy locale.
  Then I carried Ryan into the LSU ER. It was something out of a nightmare. There was a woman wearing a shower cap ranting about her time in jail and about someone throwing a "cup of shit" on someone else. Her words not mine.

 I was terrified already because Ryan was so sickly and that awful waiting room only made my fear double. I wanted to take him and run but I knew he was so very sick and if I could just get through the next few minutes everything would be better.

His Dr had already called ahead so we got in within a half hour...lightning speed for a place like that. That was when we found out that his sugar was over 600. Meters only go up to 600...so we didn't know how high it actually was until we got into an ER room and saw the first of many nurses.

His blood sugar level was 900 and he was in diabetic ketoacidosis.
 (Diabetic ketoacidosis - Wikipedia, the free encyclopedia)

They started giving him fluids and an insulin drip. This was of course after having to hold him down so they could put in the two IVs and listening to him scream and cry out in pain and fear.

My heart is broken into a million tiny shards from this week and it will take years for it to heal. There is nothing worse for a mother than watching your child suffer and be in pain. I would have thrown myself in front of a train without thinking if it meant he could avoid all of this... from the diagnosis itself to the countless pricks and pokes that he has had and will have to continue to endure.

We ended up having to be moved to another hospital due to the PICU being overcrowded at LSU. I rode with Ryan in the ambulance over to Willis Knighton-South.
I tried to make it an adventure when all the while I was dying on the inside a thousand times over.

  He requested music on the ride so I found CCR, Down on the Corner, on my phone and played it for him. In my opinion, that is one of the happiest songs that has ever been written. It's hard to feel sad when it's playing. It did conjure a small smile out of Ryan though it was weak and brief.

  We stayed at WK from Tuesday night to this morning, Saturday. It was a much better location than LSU and I felt comfortable with the nurses and doctors.
  The first thing the PICU Dr said to me after introducing himself was, "I know this seems overwhelming and I know you feel like this is too big for you but it will be ok. You will be ok. And we will get him better."

 Needless to say I had been crying off and on all day and was a total and complete wreck. I was crying as he told me this and could only nod my head in response.

  Over the first few hours information was dumped on our heads at such a rapid speed that I felt like I could drown in it. Blood sugar numbers, diabetic ketoacidosis, insulin drips and on and on.

  I know I have only mentioned my husband once but he was there, along with my mom, dad, and my grandfather (Paw-Paw) the entire time this was happening. I was, and perhaps still am, so lost in my own head over all of this that I might make it seem that I am dealing with this alone.

I'm not...
Not even close...but in that moment I felt that way. Alone in a crowded room watching my child lay in a hospital bed with tubes and wires running everywhere, begging us for something to drink (high blood sugar causes extreme thirst) and only being allowed to give him ice chips.

The first 24 hours were some of the most terrifying in all of my life. This includes the time Ryan spent in the NICU after being born 2 months early...or maybe that was just so long ago that I'm not remembering the fear the same way. Not remembering things like that can be a blessing. I hope it happens again one day with all of this. I hope I don't feel the things I feel right now forever.

As the days passed, Ryan got better. His sugars lowered and he started to look like himself again. He finally started laughing and smiling. Every time he smiles a tiny sliver of my heart mends itself back together.

The blood sugar testing sucks. The insulin injections suck more. I don't know another way to put it. What six year old likes shots? Especially when they happen 4 times a day on top of finger pricks.
  Learning how to administer the injections, how many units to give, the way he has to eat, and watching the clock for injection times, snack times, meal times...is exhausting.

I am tired in every way that a person can be tired. Mentally, physically, emotionally...right down to my soul...Tired.

We are home now, thank God, but the anxiety, worry, fear, exhaustion...all of that came with us.

The shots didn't get to stay at the hospital either, much to Ryan's dismay. We are trying to teach him about what is going on, how things have to be from now on, but...he's six. All he knows is that it's wildly unfair that he has to have shots before he can eat.

He tells us constantly that he wants it to go back to the way it was before the shots. He wants to eat whatever he wants and drink apple juice as much as he wants. He cries and screams when we give him injections and check his blood sugar. He cries when he thinks about the injections.

I cry about all of that too. Most of the time, at least in the last couple days, I've been able to do it when he can't see me. I'll leave the room and sob for a few minutes, dry my face off, take some breaths and go back to him.

This is so hard. 

People keep telling us that it gets easier and one day all of this will be normal routine. I'm sure they are right. But One Day is so far out of my line of sight right now that I can't even entertain the thought.

One Day they will have a cure for this. One Day we will be able to transplant pancreatic cells and eliminate diabetes all together.

One Day.

Right...Ok. But today, right now...I have to deal with this and it's awful.

In a future post I will have to talk about all the people that have helped us during this nightmare. There are many. From well wishes and prayers on FB to hospital visits and more. We are blessed to be surrounded by people that love and care for us.

But for now I think I'll put this post to bed. It's be a long, long day and there is no such thing as getting sleep in a hospital so I'm putting myself to bed too.

I have to get up at 2am to check Ryan's sugar again. Maybe I'll get lucky and he wont wake up.