One Year Diabetaversary

Today marks one year since Ryan was diagnosed with Type One Diabetes and our world was forever changed.
  I'm really crappy about keeping up with this blog considering the last time I wrote was November but life gets busy and to be honest I didn't have the right words to express what I felt anyhow.
  To say it has been a rough year would be an extreme understatement. I've never known Fear and Anxiety the way I've gotten to know them over the past twelve months. We are close friends now. I looked in the mirror last week and realized that I had let myself go in such an outstanding way that I could probably audition for the new season of American Horror Story: Freak Show.
  I've gained weight (EAT ALL YOUR FEELINGS!), I wear my hair in a ponytail or bun nearly every day, I'm rocking the ombre look on accident AKA I've got some roots that need attention, and I've started leaving the house without makeup or sometimes, without even looking in a mirror at all.
  I don't know if this is normal behavior or if I am handling this all so ungracefully as to be epic, but there it is...the cold, hard, truth.
  So, I am currently trying to pull myself out of this rut I have dug for myself and pay closer attention to my own health and needs as well as juggle everything that comes with having a 7 year old with diabetes.
  Lately, instead of things being easier to control, Ryan's sugars have been higher than usual and hard to keep in the normal range. After a weekend spent in Lafayette with friends who also have a T1D son, I've decided its time for a pump. Let's shake things up around here all over the place, right?!
  This will mean that my family will have to learn a whole new way of taking care of Ryan but hopefully it will make things easier and less painful for him since there will be no more injections. I will attempt to write about the switch over in order to help those that may be considering the same and want to know the dirty truth of the matter.

  When I would think about this date over the past months, the one year anniversary, I would wonder to myself about how things would be different or how they wouldn't be.
  To be honest, I may know more now but it's still not easy. I still think about it every minute of the day. I still question my every action. I still hate giving injections and finger pricks because, even though he doesn't complain as much anymore, he still feels pain and that kills me every time. I still worry while he is at school. I still hate endocrinology appointments and all the lab work because I know how much Ry hates it and because it just freaking sucks.
  But we trudge on everyday, doing what we have to do in order to keep him healthy. Some days are better than others as with anything...and some days I want to crawl into a hole and sleep for a few months. I try to remind myself on those days that it could be so much worse. I could be one of the parents that has a sick chid with no treatment options and an hourglass that is running out of sand. I pray for those parents because I can't even fathom it. But I pray for Ry too, and all the other families that are coping with T1D everyday.
  I know I sound very doom and gloom so I feel like I should also say that it's not all thunder clouds over our heads and piss in our cereal everyday...it really isn't. This year we took Ryan to the beach. It was magical watching him see the ocean for the first time...though getting him to leave the beach was a different story. Meltdown central...the boy loves the water. But a year ago I wouldn't have even thought about traveling with him all the way to Florida. The very idea of it scared me to death. What if this happens, what if that happens, what if I forget this or that, we will be so far away from his doctors, this will be so difficult, and on and on. But it was fine, great even, and he had the time of his life.

  We've been to birthday parties and played at the park. He's seen a monster truck show and every kid movie that came out in the theater...while eating popcorn (his fav). He went on his first fishing trip in a boat and spent hours playing in a pool with his friends. He graduated from Kindergarten, had his tonsils taken out, and camped out in the back yard with his dad. All the things that any non diabetic child can do...Ryan can do as well.  We just have to plan ahead, pack all his supplies, and check his sugars.
  This year I would like to sign him up for karate and swimming lessons. I avoided sports last year out of fear but I think we are ready to get back in the game again...and try out new things too.

Ryan and his daddy fishing

7th birthday party

Ryan and my mom at the theater

  I can also say that we don't have to worry about a lot of the "firsts" in the second year. The first Halloween, the first Thanksgiving, the first Christmas and New Years, and his birthday party, etc...etc... Been there done that...bring it on.

So for those that might still be in that first year haze, don't fret. One day you will open your eyes and see things clearly and start to put the pieces back together again only in a different pattern than before. And for those that never got in a haze, for those that still managed to fix their hair everyday and go about life as usual only with more equipment...stay awesome. You're doing it right too. Because I don't really know if there is a wrong way to go through this experience emotionally. You just get through it and while you are working it out, life happens anyway.

 Childhood happens anyway. 

On September 13th we will be walking for the cure. If you would like to donate to our team here is the link. 

http://www2.jdrf.org/site/TR?fr_id=3958&pg=team&team_id=157423

Any little bit helps. I hope that one day Ryan can say he used to have diabetes. 

XOXOX

That Moment When: The Juvenile Diabetes Edition

That moment when you hear your child cough/move/sigh/talk in the middle of the night and you lay in bed for three seconds trying to decide if its insane to jump up to check on him....just before jumping up to check on him, blood sugar meter in hand.

That moment when you miscount carbs and quickly grab something off his plate, hoping he wont notice.

That moment when you don't know if he has high blood sugar or if he is just being a normal, hyper child.

That moment when you don't know if he has low blood sugar or if he is just in a crabby mood.

That moment someone overhears you say,"He's been high all day."

That moment when you don't get enough blood to check his sugar and the meter reads error, causing you to use another strip and sometimes prick another finger while saying I'm sorry, I'm sorry over and over as he complains or cries.

That moment when you check your child out of school to avoid classroom parties filled with candy and cookies.

That moment when someone asks you how your child is doing and you give them blood sugar number, whether they know what it means or not. (Opps...sorry.)

That moment before the meter tells you what the reading is and you say over and over in your head, "Please be good, please, please be good."

That moment when you find out another parent is caring for a T1D child and you genuinely feel for them because you know exactly what they are dealing with everyday.

That moment when you google "cure for type one diabetes" and feel hopeful and sad all at the same time.

That moment when you come home from the hospital with a newly diagnosed child and it's 100 times more stressful than when you brought him home as a newborn.

That moment when friends or family try to understand what you deal with every day but really can't. The trying means a lot though.

That moment when you go out to eat and your child gets embarrassed at shot time because he doesn't want anyone to see him get his injection.

That moment when anyone from his school calls during the day and your first reaction is to panic.

That moment when you let yourself think about all the scary, horrible things that can happen if you don't stay on top of this every single day.

That moment when your alarm goes off at 2:30 AM to do another night time blood sugar check and the weight of this condition sits on your shoulders as you fumble through the house, looking for his meter.

That moment when you tuck a glucagon emergency kit into your back pocket when you child wants to go for a bike ride/walk around the neighborhood or even just play outside in the yard.

That moment when your child tells you his hands/legs/arms feel shaky and your heart drops to your stomach in a twinge of fear/worry/panic but you calmly check his sugar and feed him something so he wont see how much all of this scares you.

That moment when you have to tell him that he can't have any more cake even though he only had a few small bites and everyone else had big slices.

That moment when you debate calling the endocrinologist because you don't know if you are being a worry wart over the matter or if it's important.

That moment when someone asks you how you are and you don't think about yourself but your child. If they had a good day then you had a good day.

That moment when people surprise you by how much they care.

That moment when you find out someone you know has a T1D child and you feel a little bit less alone.

That moment when you call your friend and are crying from lack of sleep and complete stress and she comes over to your house and cleans it while you take a nap before going back to the hospital to be with your child. (Love you, Hayley)

That moment when your own mother says she wishes she could take all of this away from you and your child and you nearly cry because you've said the same thing to your T1D kiddo.

That moment when a friend of your mom shows up unexpectedly to the hospital on the first night after diagnosis with a bag of snacks for you and your husband and a bag of toys, crayons, and coloring books for your son. (Thank you Jodi Burr)

That moment when your child's school goes out of their way to help you anyway they can. (Thank you Apollo Elementary)

That moment when you get a message on Facebook from someone you haven't seen since  your school days and they are so kind, and so supportive that it warms your heart. (Thank you Rachel)

That moment when you realize you need a night out of the house and your friend makes the best plans and gets free tickets. (Thank you Courtney. Halloween 2013 will go down in the history books.)

That moment when you know you are on people's prayer lists. (You know who you are...too many to list and I don't want to leave out any names. Thank you)

That moment when you realize people actually read your blog.
(Whaaaaaaat? Thank you.)

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.

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.