Saturday, November 30, 2013

Eight Days In

Last Friday afternoon, I took the children to the pediatrician's office.  Baby Girl had had two febrile seizures {which are the scariest things I have ever witnessed} in the preceding two weeks, and we needed to talk to the doctor about a neurology referral.  

Buddy Boy had been having clusters of accidents {like, four in two hours} and multiple bed-wettings in a night, despite having been potty-trained since he was 20 months old.  He also had had these off-and-on complaints of 'me not eel good' and 'mine ummy urt.'  Nothing definite ever seemed to develop from the complaints and his speech apraxia made it difficult for him to tell me much more about his condition.  I had pretty much chalked up the complaints, as well as his wild mood swings, bouts of fatigue, unending hunger, and occasional sweaty/thirtsty wake-ups to being three.  I mean, three year olds kind of excel at intermittent fussing and suddenly being too tired to walk up the stairs.

But since we were headed in for Baby Girl anyway, I thought I'd get Buddy Boy checked out, as well, on the off chance that he could have a UTI.

The doctor thought a UTI might be the answer, so he ordered a urine test, and said that while we were at it, he'd have them check for glucose, just to rule out diabetes.  Wow.  Diabetes.  That had never crossed my mind.  But since no one on either side of our family has the disease, I wasn't too concerned.  

I Instagrammed this picture, while we were waiting for the doctor to come back with the results.

The results were not good.  Trace amounts of glucose in his urine led to a blood test that uncovered elevated blood sugar levels, which led to a call to the endocrinologist at Children's Hospital, which led to another blood test.  The answer kept coming up type 1 diabetes.

We were sent home for an overnight bag, and told to report to the hospital for direct admission.  We would spend the night stabilizing Buddy Boy, and the next day receiving treatment training.  It was all a crazy, scary, shocking rush, but Buddy Boy was as brave as any little three year old could be in the face of all night tests, injections, and finger pricks.

Thankfully, we caught the disease in its very early stages.  Buddy Boy's pancreas is still producing some insulin on its own at this point, which means we have a little bit of transition time to ease into treatment, as the disease progresses.  Catching it early does not mean we can stop or slow the progression of the disease, but it does mean that he did not find out he had diabetes the way most children do--by being so sick that they land in the ICU.  We are extremely grateful he was spared that.

Everyone at the hospital was so nice and so reassuring.  They spent the entirety of Saturday going over everything from what diabetes is to how to administer blood tests and insulin injections.  There wasn't really anything for Buddy Boy to do but sit and listen for hours on end.  He was so amazingly good about it all.  He sat silently by himself on the sofa, coloring pictures and admiring the emergency helicopter for at least the first three hours.  And then quietly in my lap for another two.  It wasn't until the last twenty minutes or so that he finally started asking what we could do next.

We are learning how to manage Buddy Boy's diet.  Most foods are not off-limits, but all carbs have to be balanced with protein and potentially compensated for with injected insulin.  We're adding eggs, peanut butter, or turkey to almost every meal, to balance out all the things he really likes to eat, like bread and fruit.  We'll learn more when we go in a couple weeks for another all-day training session.

We are beginning to figure out all the ways in which this disease will change our family life.  Buddy Boy likely will not be able to return to preschool this year, and we will have to make different plans for him next year.  Leaving Buddy Boy with a babysitter, or even a friend or family member, who is not extensively trained in his care is an impossibility.  Everywhere we go, we carry a diabetes pack, with a a meter, lancets, test strips, vials of insulin, syringes, alcohol swabs, gauze pads, fast-acting carbohydrates for lows, and an emergency injection pen for unconsciousness.  We prick Buddy Boy's finger at least five times a day, including twice in the night.  We have just started giving him one insulin shot a day, but expect that number to rise over the next few months, as his pancreas stops producing insulin.  There are no more food/candy rewards for good behavior in Mass or special treats at non-meal times.  Meal and snack times have become standardized, and we have to make sure Buddy Boy hasn't eaten anything within two hours before a blood test.  Buddy Boy and the other children have taken this all on with a great attitude.  They were talking about how they chose to skip the free cookies offered for children at the grocery store the other day, and Buddy Boy said, 'Me not do dat, me 'ave di-bebe!' with a great big smile on his face.  And this morning, Little Guy suggested that they throw away the candies from the toy prizes they won at the arcade yesterday, which they both did happily.

We have been blessed in many ways throughout the onset of this disease, and have seen God work all things for good.  If Buddy Boy didn't already have his speech apraxia struggles, I probably wouldn't have spent so much time talking to him about his various vague symptoms, but because we like to seize any opportunity for conversation with him, I asked him lots of questions every time he mentioned not feeling good.  If Baby Girl hadn't had two seizures in the past couple of weeks, we wouldn't have been headed to the doctor, and any mother of multiple small children knows you don't just take them all to the pediatrician lightly, so it may have been awhile before I made an appointment just for Buddy Boy.  If Buddy Boy hadn't potty trained so early, I'm sure I would have just thought the accidents and bed-wetting were a natural part of his development.  If my dear childhood friend didn't have a daughter with diabetes, I wouldn't have had anyone to tell me, as I lay in Buddy Boy's hospital bed in the middle of that first night, that this was all going to be ok, and that--yes--I was going to need my Mama to fly up. 

Children are so resilient, and Buddy Boy is so brave, I know he is going to handle diabetes beautifully.  It's just a lot to take in.  Soon, I'm sure, the pricks and shots and urine tests in the night won't feel like such a big deal, but right now, it feels like he has to go to the doctor 5 or 6 times a day, and we have to be the ones doing all the scary stuff to him.  

Buddy Boy chooses a finger to prick each time {we have to rotate to avoid the build-up of scar tissue}, and even presses the button himself, but he won't let us prick his pinky finger.  He just looks at it mournfully, shakes his head, and says it's tooooo small.  

He is so right.  

And that is how I feel about all of this.  He is just tooooo small.

**Simultaneously, we are experiencing a hard time of a different sort.  I am in the midst of another miscarriage, at 8 weeks.  This one is the result of a blighted ovum, so no baby ever actually formed--just the hope and expectation of one.  We have been given peace in God's will, and are finding this loss much easier to bear emotionally, because we have not lost the opportunity of meeting a child on earth, but physically, it is a rough go.  I have been very sick the last few days, and am awaiting an operation on Monday.  We would be ever so grateful for your prayers for our family.**


Golden Gate Fam said...

We are praying for your family, Elizabeth. You handle it all with such grace and are a true inspiration. We are thinking of you.

sky goddess said...

Thinking about you and your family. So much to take in and I am sure it is overwhelming. You've got some pretty incredible children there and they are blessed to have such great parents!

Melanie Hassell said...

I am so sorry, my heart aches for all your family is enduring. I will be praying.

By the way, I found your blog through the Bromberg girls. Katie attended my church as a high schooler and Amy was in preschool with my oldest. Be encouraged that you are a great witness of God's work of grace in the life of one of his children.

Unknown said...

I don't know you personally, but came across your blog through another friend I attended Auburn with - War Eagle by the way:-) Wanted to say how sorry I am about EVERYTHING y'all are going through and I will be praying.

Katherine {eggton} said...

You and your family are truly an inspiration. The way you convey your ups and downs selflessly to the outside world by writing it down is really amazing.

I am so glad that everything worked out as it did with you taking Buddy Boy to the hospital. It's mind-boggling, isn't it, all the little things that led up to the diagnosis? The if/thens?

I will be thinking about you and wishing you strength--which you already have in abundance, my dear girl.

Barry said...

Found your blog because I have just recently discovered that we have some Snodgrass ancestry, in Indiana. Assumed your blog would be about family history, but found it to be very charming, interesting and well-written. Beautiful kids. Very sorry about Max and the more recent miscarriage. Perhaps it helps to sense how many other people have had the same disappointments. My wife had several of those... but fortunately enough normal pregnancies that we have what is considered these days a large family.

Good luck managing the diabetes. We have very close friend who has lived with type 1 diabetes almost his whole life. He's 40 years old now, a highly successful physician with a wonderful family. So the condition may seem daunting, but it doesn't need to keep him from anything important.

Mary Louis Quinn said...

I have been meaning to comment but always seem to be reading from my phone. I am so, so sorry about your sweet boy. I know that is devastating. I have a cousin who was diagnosed with type 1 DM when she was 18 months old. The only silver lining is that she was so young that she hadn't yet developed certain habits/wasn't old enough to make her own food choices. She was one of the first pediatric patients in CA to have an insulin pump, and it worked great for them. They were nervous for a while about trusting her with sitters, but eventually they started leaving her with us and other family members so they could go out to dinner. And when she started kindergarten, they had a great aide who worked with her check her glucose and program her pump. I am praying that y'all will quickly be able to adjust to this new lifestyle and for Buddy Boy's attitude to remain great! I am so sorry for all your family has endured over this last year. :(