Thursday, September 27, 2012

D is for the... Day that Changed Everything

I had a lot of different ideas for my "D" post. D is for... Drama or Diva were my top two choices. Life with a pre-teen girl. Unfortunately, that post will have to wait for another day as something came into our lives last week that changed it forever.

So I decided to title this post The Day that Changed Everything. September 17, 2012 was that day. And this is our story.

Crazy 1 and Crazy 2
It started off as a wonderfully ordinary day. We had breakfast, did our school work, ate lunch. After lunch we were off to a local park to hang with our good friend, Kristy, and her two children, Morgan (3) and Connor (1). We have known Kristy for a long time. Long before Kayleigh was born. She and her hubby Matt were our neighbors and family when we were all stationed in Guam many years ago.

We reconnected last year and have been hanging ever since. My Kayleigh and her Morgan are BFFs and Toy Story nuts. And sometimes bathroom buddies. lol They generally enjoy being weird together. They enjoy doing things like walking around the park while wearing bicycle helmets. Aren't they sweet? lol

On this day, the little girls brought their scooters, Mackenzie her bike, and Connor his knack for sitting on the edge of a picnic table in just the spot that will freak me out. He's such a boy! =o)

Mackenzie was biking around but complaining that her bike wasn't working right. It was too hard to pedal. So I kept messing around with it and riding around on it but it seemed to be working just fine to me. I decided her issue was just the tween 'tude that we've been enjoying lately so I declared her Connor's keeper and take him to play. So she followed him around the playground.

Eventually it was time for Connor to have a little TLC. You see, Connor was diagnosed with Type 1 diabetes this past July. It was such a shock for everyone. It's heartbreaking to think of such a wee one having such a horrible disease. You can't even wrap your mind around it when you see this tiny, little guy hold out his tiny finger for a check or watch him get an insulin shot without a peep.

But have it he does and it's been a huge adjustment for his family. Watching Kristy deal with it has been nothing short of amazing. It's one of those things that a mom has to jump right into and she sure did. She learned a lot in a very short time. But there is still a lot of unknown. With all the details that go into caring for a child with T1D, I couldn't imagine ever letting him out of my sight if he were mine. And feeling like it's not ever safe to leave your child with someone else is a huge stress in and of itself.

After his diagnosis I began picking her brain and asking about what she does, how she does it because I wanted to learn how to care for him in the hopes that one day she'd be able to go out and feel like somebody would be able to care for him for a couple of hours.

So any how, back to the story... It was time for Connor to have his glucose check and a snack so over he toddled to do what he does several times a day. Finger prick, snack, insulin. Mackenzie came grumping over in a mood. So I began to razz her a little bit about it and suggested that maybe her blood sugar was low too and that she needed a snack. Food is generally a quick way to cheer this scrawny child up. She's obsessed by it and eats like a teen age boy.

So she agreed to eat her snack and Kristy said something along the lines of hey wouldn't it be fun to test your blood sugar? You know for science? So after some goading she agreed to do it. So Kristy loaded up her meter with a fresh supplies and the finger pricking began.

The results popped up on the meter and Kristy got quiet. She showed me the results. The machine said hi. I wasn't sure what that meant exactly but I knew it wasn't good. Then she suggested that we do it one more time, in case of a glitch. The result was the same, hi. Then Kristy decided to test herself just to be sure there wasn't a malfunction. She was within the normal range.  She told me that the machine only measures up to 500. Any levels higher than 500 come up as high.

I think this was the point that I knew something was really wrong. And I was pretty certain that I knew what it was. I think Kristy did too. It was probably a bit of a flashback to when she first tested Connor. Next she tested her ketones, which I won't go into what they are today, but those were extremely high too. I asked her what she would do and she said she'd get her into her doctor ASAP.

So I called my husband and then our doctor before we even left the park. I was a little surprised by the reaction of the doctor's office. I had expected that they'd either try and get her in ASAP or tell me to go to the ER. They did neither. They offered me an appointment for late on Wednesday. It was Monday.

I took the girls back home to discuss this further with my husband. At this point he didn't really think anything was wrong and that it was a glitch with the meter. We ate dinner and then headed over to Kristy's to pick up her extra meter, as we planned to test her again in the morning, after fasting all night. Before we left, I packed an overnight bag for Kayleigh and grabbed sweatshirts for the rest of us. I had already made up my mind about the next course of action. I knew that Kevin would come to the same conclusion after talking with Kristy.

Sleepy Time!
Once we got there, we tested Mackie in front of him. It was sobering to see that "hi" pop up again. We even tested Kevin so he could see that it wasn't the meter. As I expected, he wanted to take her to the ER. How convenient that I had an overnight bag for Kayleigh. =o)

We got Kayleigh settled, not that she cared. She was just excited to be having her first sleepover.

First stop the Naval Medical Center emergency room. (We are retired Navy.) It's one of two hospitals in the area that has a pediatric endocrinologists. And we knew that everything would be covered by our insurance there.

We spent a few hours in the ER where she blew the numbers off of their machine. She gave a urine sample, blood, and had a host of other tests. We dealt with a bunch of interns and medical students who talk a good game but say very little. I swear one of them was barely 12.  I refer to him as Doogie now and forever more. =o)

They have her bag after IV fluid to flush out the sugar and bring her levels down.  The urine test showed her levels as greater than 1000. She was down to 640 after the first bag, 580 after the second.

The ER is boring.
Insulin is good!
Finally the peds doctor showed up. (Just the regular pediatric doctor, not the endo.) He introduced himself. Guess what his name was? Guess, guess, guess?

Dr. Love. For realz! Of all the awesome things to come our way. Dr. Loooovvvveeee. It was after one in the morning. We cracked up. True story.

He said that she had diabetes, most likely type one, and were beginning treatment for it immediately.

It was exactly what we expected him to say. It was exactly what we had prepared her for as we sat there for hours reading a book on diabetes that we had borrowed from our friend. It was exactly what we had feared.

He said they were continuing with the IV fluid and starting her on an insulin drip. They'd be moving her up to the PICU (pediatric intensive care unit) where they would continue to work to bring her levels down and monitor her. In the morning they would move her to the regular peds ward and we'd begin our education on how to care for her.

Around two, they finally moved her up to the PICU. It was a long night. We could stay with her but we weren't allowed to sleep in the room. I was too tired to remember the why behind that. There were sleeping beds in the PICU waiting area but we didn't want to leave Mackie alone as she was understandably frightened.

They brought her a pair of pj's but she refused to put them on. She had it in her head that if she put them on she'd have to stay there for a long time. We finally got her into the bottoms so she could rest more comfortably than in the jeans she was wearing.

The nurses checked her blood sugar hourly. A lot of times she slept right through it. She woke up for a while around 5:30. At 6:30 Kevin and I had to leave the PICU for an hour while the staffed turned over. Patient privacy and all that. Mackenzie did not like that at all.

When we came back, the educating began. The first thing they did is stop the insulin drip. We were about to learn how to give her the insulin the old fashioned way, with a syringe. Her breakfast arrived, she ate it, and they showed her how to count the carbs. Once the carbs were counted, they gave her a carb ratio. How many units of insulin she needed to take for the amount of carbs she ate. They started off at 1:25.

I say started because that number is just the first of many numbers she'll have. It's pretty much a game of trial and error to figure out what works for her. Anyhow, she and the nurse figured out how many units of insulin she need to take to cover what she ate.

We had a quick visit from Dr. Jensen, her endocrinologist, and new best friend. He wasn't going to be able to give us the big talk until later in the afternoon but he popped in to say hi. For a quick visit, he had a lot to say. lol We all gave him two thumbs up.

Next we were shown how to draw the insulin into the syringe. The nurse tried to get Mackenzie to try it out but she was not interested. The poor dear. So the nurse did and gave her the injection. Mackenzie was surprised to find that it didn't really hurt.

The brilliant nurse brought out a vile of saline (similar to how the insulin was stored) and left it and a syringe for Mackenzie to practice with. She suggested drawing it into the syringe and shooting it out like a water gun. What a great idea. Mackenzie was all over that. It was at that moment that Mackenzie started to relax a bit and feel like she could do this. I heart that nurse.

Next a dietician came in. She talked to us more about counting carbs and about eating a balanced diet. I was very surprised to learn that they didn't have any real food restrictions other then to eat a healthy, balanced diet. She can eat whatever she wants as long as she takes the insulin to cover it. Not that they recommend eating whatever you want but to maintain a healthy balance and treat yourself now and then.

Third on our list of important vistors was Linda, the diabetes educator, and Mackenzie's other new best friend. Linda, along with Dr. Jensen, make up Mackenzie's diabetes management team. They make themselves available to us 24 hours a day, 7 days a week, 365 days a year. They not only make the decisions regarding her care and medications, they are instructing us how to take over for them one day.

Holy prescriptions Batman!!!
Linda went into more detail how to use the syringes/pens for injections. Explained a bit more about how the ratios work. Explained things we need to look out for in regards to high and low blood sugar. Introduced the scary world of glucagon. (You'll probably learn more about that when we start blogging about G.) Had us practicing giving injections. Quizzed us. Gave us all the phone numbers and emails we'll ever need. Loaded us up with reading material. She had a lot to say. My pen almost ran out of ink.

After she left it was well past lunch time and Kevin and I were starving after the pathetic breakfast we ate in the galley. (Note: if the military offers you some bacon do yourself a favor and say no. I can't believe my husband didn't warn me. Gag!) So we got Mackenzie settled with her meal and we set off in search of food and were going to pick up her prescriptions.

It had been a very sobering, exhausting, and overwhelming day so far. Who knew that we'd get our first chuckle since Dr. Love at the pharmacy. We went to the window, handed them our ID and then it was BAM!

Do you see those two large bags my husband is holding? Those are what the clerk plopped down onto the counter. They were filled to the top. And then she said, "Oh wait! I forgot something," and scurries off to get two more items. The insulin. It was in the fridge. We just started laughing and asked if we were set for the year now. Apparently what we had was a months worth of supplies. That's ONE month's worth in case you still aren't sure.

It's like Christmas only sucky
What was in the bag? Two glucose meters (complete with meter, "finger pricker", sample size blood test strips, and a handy dandy case), 6 boxes of alcohol wipes, 3 glucagon kits, 2 boxes of insulin (long-actiing and rapid), a billion boxes of blood test strips, a slightly lesser amount of ketone test strips, lancets for finger pricking, needles for injections, and a partridge in a pear tree.

Actually we're getting the pear tree with our new house. No partridge included.

Eventually Dr. Jensen came back and educated us some more. The man is brilliant and could probably have talk for weeks about diabetes. He quizzed a bit about various situations regarding her care but gave us the green light to take her home.

Generally when somebody is diagnosed with diabetes there are in the hospital for at least three days learning about how to care for the child. Unfortunately, I already had some knowledge of the disease and the care involved because our friend's sweet, sweet baby boy was already diagnosed.

So not only did our friends misfortune save our daughter's life, it got her sprung from the hospital early. Talk about bitter-sweet and mixed emotions.

As I wind down this post, you're probably wondering why the tone of it isn't as heartbroken as one might think someone in my situation would feel. It's not that I'm not heartbroken, I am. This is something she'll have to deal with every day for the rest of her life. It's just that I'm too busy being grateful to focus on the sadness.

Mackenzie is very, very fortunate that we found out the way that we did. When I say that our friend Kristy saved Mackenzie's life, it's because that's exactly what she did. Most of the time, the diabetes comes on more suddenly. More of a one minute they're fine and the next minute something is off.

Apparently Mackenzie is one of the rare people whose symptoms came on gradually. The doctor described it as a smoldering fire. It's small and almost un-noticable one mind and then BAM! You're in trouble. We were so blessed to find out before the something terrible happened.

After talking with us about the various symptoms, the doctor guesses that's she had it for quite a long time. Probably at least a year. Hindsight being what it is, there were signs. Unfortunately, a lot of the signs are also typical of a child hitting puberty. Weight loss, extreme hunger and thirst, moodiness, frequent urination, fatigue.  Mackenzie exhibited quite a few of them.

She lost a lot of weight last year during basketball season. Well running up and down a court for a few hours a week could cause that. She started eating like a horse. Typical of a growth spurt. Drank water by the gallons and then peed it out. As moody as the day is long. She's a tween. The hormones are kicking in. The only symptom she didn't really seem to have was the tiredness. She's never been a great sleeper and the diabetes didn't change that.

So as we adjust to our new normal, I'm going to continue to praise God that we found out the way we that we did because it could've been a million times worse. I'm going to rejoice that she can pretty much enjoy life as usual with just a few adjustments. And I'm going to be thankful that she's still here with us.



Melissa said...

wow, so glad that you did catch it at the right time! Will be praying as you try to adjust levels! So glad you have a close friend to turn to for help as well!!

Jennifer said...

Your outlook is amazing. I love to see that you are praising God through this new challenge. You had me cracking up about Doogie then Dr. Love. That is wonderful that you had some great caregivers.

Your story reminds me of my niece. She stayed with us while her little sister was born, and I remembered later- after she ended up in a diabetic coma- about her leg complaints. She ended up ok, but that was how they learned of her dx. I'm praising God with you that that wee little friend helped your sweetie catch this in time.

Anonymous said...

What a Godsend this is that you found out. How wonderful that your friend is available for counsel. So glad you got this taken care of and I'm amazed at your attitude of praise!

Christy said...

I'm so happy and thrilled to hear that you caught it in time. It is awful to see your child go through something like this, but wonderful to know it is manageable.

It sounds like you have a great group of medical professionals who will take care of Mackenzie.

I'm diabetic and come from a diabetic family. It doesn't matter how much you know about the disease, it is staggering every time someone new is diagnosed.

Cristi said...

I'm just now finishing up my own blogging through the alphabet post -- D is for Diabetes.

I'm so thankful that you found out and got her treated before she got really sick.

Kristi said...

Wow, what in INCREDIBLE story!! I've heard a couple of stories where God has brought a matter to a person's heart, maybe educating themselves like you did, or advocating for a special need, or something like that, in preparation for an issue like this coming up. Praise God that you realized how serious her sugar was, and that your friend was with you to check her sugar!

Unknown said...

I wish this wasn't a story that you had to share, but so glad that you have the incredible support that you and Kenzie and family have! It's going to make such a huge difference! Glad to see her smiling! :D

Kelly Burgess said...

I know this will be a lifelong, daily struggle for her to learn to manage this disease and deal with its long-term effects, but I'm so prayerfully thankful that she is okay and that she didn't have a serious episode that brought about the diagnosis. I've had her on my heart ever since this came about, and we all send our love. We thought about coming by...Hayden really wanted to see her...but I didn't want to disrupt your busy-ness in packing, moving, and dealing with this in the first days. We love you guys!

Ambra said...

Wow. What an amazing story! God was certainly watching out for your sweet daughter. Thank you for sharing your experience.

Joesette said...

Wow! What an amazingly "divine appointment" that play date was! My niece was diagnosed at age 7, the day before Thanksgiving and was in the hospital for well over a week. So even getting out early was a miracle for Mackenzie.

Love your attitude and grateful heart!

Unknown said...

Wow...what a story! How amazing that you caught this when you did! If you have to go through this with your daughter, it's a blessing to have such a good friend for support, and such helpful caregivers.

Sarah said...

What a week! Your attitude is inspiring to me. It's so hard to know that this will be a life long change for her. Praying for you all!

Mary said...

Wow, so blessed that you caught it on time. My brother (now 37) was diagoned Type 1 when he was 9 years old. I have Type 2. It's nothing to mess around with. I am sorry you have to deal with this, but so glad you are aware!

Unknown said...

wow is the word of the day, I guess. but it's the only one that fits here.


Kym said...

I love how God knew and got everything lined up and circumstances in place so that you would find out what you needed to know!


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