Sunday, August 5, 2012

unexpected journey...

It's been a very long week.  We're all exhausted, but moving forward. I'm still in shock and haven't quite wrapped my head around everything yet.  We are so lucky to have so many friends and family sending prayers and words of encouragement; it's what is getting us through right now.  One of you described this all as an "unexpected journey" and that's exactly what it has been.  It all came out of nowhere, slapping us across the face, but now we've come to and we're making our way down this new path.  I know there's many of you who have been asking lots of questions and don't really know what's going on so I thought I'd recap the last week for you all.

Day 1: Tuesday, July 31
I had been having some concerns about Boogie. He had been drinking a lot and urinating just as much.  For awhile a wrote it off to the extreme heat we've been having, but over the previous week it really started to concern me. It wasn't just the amount, but the extreme agitation it seemed to be causing him.  He would chug down 10 ounces of water and immediately ask for more, and repeat and repeat.  Drinking 30 ounces at a time and getting more and more frustrated.  He's always been what we've called a "heavy wetter," but over the previous week he would wake up in the mornings soaking wet, head to toe, the entire crib sopping.  I finally said to myself "this is more than just the heat, there's something not right." So, Tuesday morning we brought Boogie into our pediatrician's office.  Dr. Bush looked a little puzzled.  He acknowledged that these were symptoms of things like Diabetes, but other than that Boogie looked and acted so healthy.  We went ahead and drew some blood just to check and sure enough, his blood glucose was 400! Dr. Bush immediately got on the phone with the Endocrinologist while we waited for Boogie to give us a urine sample.  After pumping him full of water and an hour of waiting, that sample confirmed our fears....Type 1 Diabetes. I knew it was a possibility based on his symptoms, but never expected the doctor to actually say it. After giving us the diagnosis, Dr. Bush said that Children's Mercy had a bed waiting for Boogie and we should head down there right away to be admitted.

Our heads still spinning, we stopped home to gather some things, not knowing how long we would be there or what to be expecting.  Once arriving at the hospital we were admitted right away and immediately bombarded with questions from the endocrinology team. Everyone seemed to be in shock at how healthy Boogie was.  Everyone kept saying, "I can't believe you caught it this soon" and "most kids come here in some stage of DKA (Diabetic Ketoacidosis) and we have to get them stable first."  The first thing they wanted to do was take lots of blood samples and start an IV.  Boogie and I headed into the lab room.  I held him on my lap while 3 different nurses tried to start the line.  I could not believe (and neither could the nurses) how well Boogie did with this.  Through all the poking and wiggling of needles he was overall very calm and only cried a little bit.  They were able to get enough for a few blood samples, but couldn't get the IV started so we took a break and headed back to our room.

By this time they had told us we would be there until at least Thursday afternoon.  So, J decided to head home with C-Monk to let her take a nap and Boogie and I cuddled up to watch some of the Olympics.  Then, in came the vascular team with all their fancy equipment to try again at starting his IV.  This, hands down, was the most traumatic part of this entire experience, for Boogie and I both.  I know they do this all the time and they're the "experts" at getting a vein, but I'm not sure there tactics helped the situation at all.  They wrapped Boogie up like a burrito with one arm sticking out. Then one of them layed on top of him with her armpit in his face and held down his arm like he was some sort of rabid beast about to escape while the other tried to find a vein.  I will never get that look of horror on his face out of my head.  He screamed and cried like they were trying to kill him, which, from his perspective, is probably exactly how it felt.  I tried to stay strong, stroking his hair and soothing him with a calm voice, but inside I was screaming and crying, too. They finally got the IV started and left and I just sat there and held him and cried.

Once that was over, it was on to starting regular checks of his blood glucose through finger pricks and starting his doses of insulin.  I'm still in awe of how well he is taking all of this.  He's so brave!! That night when they brought his dinner tray up it had a bright orange sticker on it that said "Diabetic." Seeing that label made me so angry.  I don't want my son to have a label.  I don't ever want him to be defined by this.  I just wanted to grab that sticker and rip it up into a million pieces and shove it up somewhere.  Why is this happening to my sweet little boy? Just 2 years old??! He shouldn't have to know this life.

Day 2: Wednesday, August 1
Today had it's highs and lows.  Boogie is such a smart kid and is starting to catch onto everything that's going on.  Whenever anyone would walk into the room he would say "no! all done! no bandaids!" It broke my heart.  He's so young, he doesn't understand why these people keep coming in and hurting him. I hate that he's too young to understand.  I don't want him to resent J or I or think that we want to hurt him. On the other hand, I'm somewhat thankful that this is all happening while he is so young, because in the long run, he won't know any different. This will just be his way of life.

On a brighter note, we had a huge highlight of the day.  I would even call it a highlight of the year, diabetes or no diabetes!  It just so happened that the hospital had arranged for some of the KC Royal's to visit today.  And it just so happened that Tucker's favorite Royal was one of those that was scheduled to be there. Into our room walked Alex Gordon, Luke Hochaever and Jeff "Frenchy" Francouer!! Boogie didn't really understand at first, and as his usually does when he feels overwhelmed he got really quiet. But, they brought with them a few gifts, one of which was a farm animal puzzle.  They opened it up and "Frenchy" started going through all the animals and asking Boogie what they were and what noises they made.  People began flocking into the room (nurses, Royals PR people, etc) because Boogie had them all laughing with all his animal noises.  The players eventually left the room and I think Boogie finally started to realize who they were and what was going on and starting yelling "Go Frenchy!" just like he does when we watch the games.  Once he started, he wouldn't stop.  In no time he had the entire nurses station rolling in laughter! Then, he said he wanted to say "bye bye" to Frenchy, so I scooped him up and we headed down the hallway in search of them.  As they were coming out of another room Boogie spotted them and yelled "Go Frenchy!"   Frenchy gave him a huge smile and said "it's my buddy!" and gave him a big high five. Then, as they were walking away, Boogie yelled after them "bye bye Frenchy!"  This was such a blessing.  It lightened the mood for all of us.  A little bit of the weight lifted off my shoulders.  It was just a little glimpse into the idea that Boogie can still be a normal kid.

Day 3: Thursday, August 2
All day yesterday and today we sat through our diabetes education; ie: they threw tons and tons of information at parents who were still in a state of shock and we tried to absorb as much as possible.  We're still not experts; there's tons more to learn, but we left the hospital feeling a little bit more aware and in control.  I was happy to hear from all the nurses and dietitians, that no, he doesn't have to be on sugar free everything, that in fact, they discourage that.  He can eat a totally normal diet, but emphasized the importance of having well balanced meals. There are a few things that he has to have sugar free; basically anything that is liquid at room temperature, juices, gravy, syrup, etc. Other than that, it's just a matter of counting carbs and dosing his insulin accordingly.

We finally were discharged around 4:30pm and headed home....where all hell broke loose....

In the hospital we started using our own poker and insulin pens.  J and I were doing all the testing and dosing before we left so we felt really confident with soon as we got home, our poker stopped working.  We tried and tried and tried, but could get a prick.  All the while, Boogie was getting more and more agitated and hungry.  We decided to go ahead and let him eat and dosed him accordingly.  After dinner, J headed to CVS to pick up all the prescriptions and to ask the pharmacist if they could help with the poker (which of course they couldn't).  After taking it all apart and putting it back together, J finally got it working.  Only to take his bedtime test to find his glucose level was 500!! Even though the nurses told us not to freak out over high readings, we of course, freaked out.  We grabbed the ketone test kit (this tests the level of ketones in his blood, an indicator of whether his body is beginning to break down other tissues in order to feed himself, if these build up it can send him into DKA). We got the test done and then just stared at the meter.  It said 0.6 mmol/dL.  We both just looked at each other like "?" We realized that the educators never went over this.  We reviewed the urine ketone test strips and what to do when those turned certain colors, but because Boogie isn't potty trained, they sent us home with the blood meter....which is in a total different measurement system.  After another round of freaking out we finally grabbed a computer and started searching for some conversions.   Once we concluded that all we needed to do was just push some fluids in him and send him to bed, we both collapsed with exhaustion.  If there's something good to come out of all this it is that J and I have been reassured as to how good of a team we are!

Days 4-6, Friday-Sunday
We're falling into a routine.  Boogie doesn't fight any of his tests or even his insulin shots. I am in shock and awe of a 2 y/o.  I guess it's now showing to be a good thing that he's so young.  He has no idea the severity of what is going on.  He's calm and relaxed and his normal ornery self. He uses the alcohol wipes to clean his fingers for his pokes.  He helps count down as we give him his insulin shots.  It's amazing. J and I on the other hand are physically and emotionally exhausted.  For a few weeks, we have to test Boogie at midnight and 3am every night.  Which, has proven to be a good thing, because he has "crashed" the last two nights. He glucose levels before we put him to bed have been right around 210/215, but by midnight have crashed to the 70s.  This means we have to pump him with a little sugar. I'm afraid Boogie is starting to enjoy his midnight and 3am juice and peanut butter crackers, plus a little snuggle time :)  We have to call into the diabetes clinic this week to report all his glucose readings, so hopefully they can readjust his doses and get things balanced better.

On another note....Boogie is thoroughly enjoying the Olympics!  Whenever gymnastics is on he runs and jumps around the room and does 'handstands' and kicks then gives everyone hugs saying "thank you much."  When swimming is on he yells "scoop! scoop! scoop!" at the TV (something he learned in swim lessons).  When track is on he crouches down and waits for J to yell "set, go!" then he springs up and runs across the room.  He's a little athlete in the making.  If I have anything to do with it, this new challenge won't hold him back.  I'm making the promise now that I'm not going to be "that mom."  This diabetes is not an excuse, it's not a label.  I will push him and let him do what ever it is that he wants to do. This is just the beginning if this new journey.  We have lots to learn and understand.  We'll keep you all posted along the way.


  1. Wow, Courtney! I am so amazed at little Tucker, and you and J as well! I know it's going to be a hard journey, but if anyone can do it, you can!

    I don't know if you are religious, but I am, and I know without a doubt that the Lord has his hand in all things. He will not give us any trials that we cannot overcome without His help. Things won't be easy, but these and every other trial will definitely make you grow and become a better person.

    Who knows... maybe you'll meet someone else, one day, going through this exact thing with their little one, and you will be the one holding them together and helping them through it all.

    The Lord has a plan for you and for Tucker. He's an awesome kid, and you are awesome parents. I know you'll get through this!

    Katee Smith (and Hampton)

  2. I am the WTE mom that posted back to you on the board. I am glad you had him checked and he is doing well. He will stabilize soon and things will get better. I am praying!!

  3. I found this site today and it has recipes for children with diabetes.