Andy’s Story, Part I: Initial Diagnosis

After writing last night’s post and reflecting on the significance of Katie’s age today, I felt the need to write about some memories of Andy.  Today, Katie is 18 weeks and 1 day old.  This is the exact age that Andy was rushed to the Emergency Room at LeBohneur Children’s Hospital in Memphis, Tennessee.  That day will always stand out in my memory of him and will forever be tied to many different emotions that are as fresh today as they were at the moment I saw him lying on that huge bed in the ER engulfed by wires and machines.  He was so tiny, a mere 24 1/2 inches long and 10 pounds.  The only part of his body that had any substance to it was his stomach and even that was getting smaller.  Dan and I were looking at some pictures I found a few nights ago of Andy.  Looking at those pictures now, you can clearly see how sick he truly was, but at the time we didn’t notice because we saw him every day.  What amazes me is that the doctors didn’t see it either.

Andy seemed to be a normal baby when he was 3 months old.  He had a few rolls of fat on him and he nursed well.  He was a little fussy which we attributed to colick, but other than that, he was a happy baby.  We were living in an apartment at the time in Southaven, Mississippi so we took full advantage of the pool that summer.  I think this was before swimmers diapers were being made for little babies so we naturally just put him in the pool in a regular diaper and a onesie.  Now, anybody who has ever done this knows just how big a little diaper can get when saturated with pool water!  Then in August, just after I started back to school, we started noticing changes in Andy.  Things that in retrospect make so much sense, but in the middle of the crisis, we just did not put two and two together.

It started with what seemed like a cold at the end of the first week of August.  I chalked it up to him being new to daycare and possibly because he was passed around from one nurse to the next while I spent a night in the ER myself for what turned out to be kidney stones, ugh!  We, of course, took him to the pediatrician and he said it was just a virus and Andy would just have to get over it on his own.  I think that doctor may have said it was ok to give him some over-the-counter infant cold medicine.  For two weeks, Andy fought the cold and I kept bringing him back to the doctor because he just seemed to be getting worse instead of better.  On the 18th, Andy had his normal 4 month check up.  Now, because it is not recommended that pediatricians check kids at three months of age, the medical records show that Andy had not gained any weight from two months to four months.  I know that he had because I had weighed him on my own scale at home when he was 3 months old and he was 12 pounds 4 ounces on his 3 month birthday.  I remember, though I did not record it, that at the end of July, he was close to 13 pounds.  The doctor told me at his 4 month checkup  to start feeding him cereal and to increase the formula supplementation that we were already doing to help him gain weight.  Other than that, the doctor said he was in good health.  I think he may have prescribed an antibiotic because his cold had gotten a little worse at that time too.

One day that week, Dan came home and went to check on Andy and asked me if we had just gone to the pool because his diaper was so full.  I said no, but told him Andy had taken a long nap so that’s probably why it was so big.  That weekend, Dan’s two sisters and niece came to visit from New York.  We spent a lot of time playing and going to the pool, so it didn’t seem unusual that Andy was sleeping so much.  I just figured he was tired because he was worn out.  When Sunday rolled around, though, he took a turn for the worse.  That day, I remember vividly.  Andy wanted to nurse constantly.  I would offer him a breast and he would latch on and nurse for 30-45 minutes.  Then an hour later, he would be hungry again.  I did this all day until finally that afternoon, he wouldn’t even latch on.  I was in tears and called my mom who consoled me and said he was probably just tired from all of the attention he was getting from his aunts.

Monday, when I picked Andy up from the babysitter’s house, she mentioned she was concerned about his neck because he was not holding his head up anymore like he was able to do previously.  I immediately took him to the pediatrician who looked him over and diagnosed him with muscular torticolis.  I was beginning to get mad because the doctors kept telling me he was fine and I just knew something was wrong, but couldn’t put my finger on it.  In reality, Andy had lost all muscle control due to his body being in Diabetic Ketoacidosis (DKA) and his body was literally feeding on itself to try to get rid of the sugar in his blood stream.

Again, though, I put my trust in the doctors and went back to work on Tuesday and brought Andy to the babysitter’s again, with the explanation the doctor gave me.  Now, here is where the hand of God was wonderfully and amazingly obvious.  Kristen, Andy’s babysitter, became concerned when she couldn’t wake Andy up from his morning nap to eat.  She called her mother who was a former nurse and her mother advised her to call one of us to come pick him up or call 911 if she couldn’t get us.  Dan, who normally worked nearly 45 minutes away, had been working at the Memphis airport that day and due to the horrible high temperatures, he and his coworker decided to take off work early.  Just as Kristen had placed her hand on the phone to call Dan, the phone rang and Dan was calling to say he was coming to pick up Andy!

When he got to Kristen’s house, she voiced her concerns about his sleeping that morning and told him that Andy had not taken his bottle all morning either.  At this point, Andy’s breathing was very labored and his whole neck was straining with every breath.  Dan came to see me at school so he could get directions to the pediatrician’s office and a check to pay them since he didn’t have any money on him.  I remember seeing him in his car seat struggling with every breath.  The kids were changing classes and getting ready for lunch when he came so I just assumed he was coming for lunch, until I saw the worried look on his face.

Dan says that when he got to the office, the nurse took one look at Andy and rushed to get a doctor.  She told the doctor to “come right now” and when he didn’t move quickly enough, she sternly and adamantly demanded “RIGHT NOW!”  Immediately, they took Dan and Andy back to a room and called the ambulance.  I don’t know if it made a difference, but Dan says when he met the EMT’s and told them that he worked for Jimmy Jones, the chief’s brother-in-law, he felt like they began to work more quickly and rush even faster.  They tried to put him at ease on the very quick ride to the hospital.  Andy’s blood oxygen level was extremely low so they put him on oxygen in the ambulance.

Just after I sat down to lunch with my class of 5th graders, my assistant principal sat down next to me at the table and whispered in my ear.  She told me to try not to worry, but that they were rushing Andy to the ER at LeBohneur and she was going to have one of the Kindergarten assistants drive me there.  I must have gone back to my room to get my purse and some books to do lesson plans because I had them that night, but I was in such a daze until I got to the ER.

When I walked in, there were so many people surrounding the bed that I could barely see my tiny son.  He was lying on a normal sized hospital bed and there were wires attached to every part of his small, frail body.  I remember they did a chest X-ray and took a lot of blood, but other than that, I don’t really remember much.  There was a flurry of activity for the first hour and then there was silence for a while.  At one point, I was sitting in the room by myself with Andy (Dan had gone outside for some air and a cigarette) and a woman doctor walked into the room.  She tore a piece of paper off of a machine (what I assume was like a fax of some sort from the labs).  She started shaking her head as if in disbelief.  I asked her what was wrong.  She turned to me and said, “It doesn’t make sense. His blood sugar is extremely high and his pH is low.  But he’s too young!”  I can’t remember if she actually said diabetes or not, but I know I interpreted it that way because of the words “high blood sugar”.  Amazingly, the emotion I felt at that minute was not one of dread or disappointment, but satisfaction.  I was relieved to finally know what was wrong with my son.  After three weeks of doctors telling me he was fine and me insisting that something was wrong, I finally had a name to his condition, diabetes.

There is so much more to tell, but I feel like this post is so long already.  I will end here for now and pick up on this story in a later post.  Just know, this is not the end of his story.  There is so much more to tell.  So much I want to write about before I forget every emotion I went through at that time.  Please bear with me as I get this story out of my head and documented for others to see.  I feel like it is necessary to tell my story so others like my children can be identified and put on the proper medication.  There will be more to come, I promise.

This entry was posted in Andy's Story by Christy. Bookmark the permalink.

About Christy

Christy Vacchio is a former teacher and now Science Instructional Coach in Cincinnati. She is an avid reader and researcher. While she has her bachelor's and master's degrees in education, she plans to get her PhD in Neuroscience in the future. She hopes to participate in research on Neonatal Diabetes and Developmental Delays one day.

3 thoughts on “Andy’s Story, Part I: Initial Diagnosis

  1. I remember this time too Christy, Iooking back on it now, you’re right, it was so odd nobody knew what was wrong with him! I remember Dan bringing him up to school that day and the emotions that surrounded that time! I’m happy you wrote it all down, wow so emotional! Thanks for sharing, love you all!

  2. Christy, it breaks my heart to read Andy’s story. I look forward to reading more when you’re able to write it. It brings me back to the day Owen was diagnosed (1/24/08), though it was much easier on us because we self-diagnosed Owen at home, brought him to the ER and told them he was diabetic. He never reached DKA and was only 20 days old – blood glucose was 397. My husband, though, was 7 1/2 weeks old at the time of diagnosis and very, very sick with blood sugars above 900! He experienced febrile seizures as a result. He still has a scar on his scalp where his IV had to be placed because his body was so tiny.

    Looking forward to hearing more of your story.

    Maria Sabala

  3. Hi Cristy,

    Thank you so much for sharing your story. Reading this post brings tears to my eyes. I’m so sorry it took the doctors so long to diagnose your son. My son went into DKA around 3 months of age, showing a lot of the same symptoms as your boy. It is so heartbreaking to see them in such a state, on a hospital bed, full of tubes and wires. Like you, I was relieved to hear the diagnosis of diabetes, because it’s something known and treatable. Just a couple weeks ago, we got the results of his DNA test back, and learned that he has the KCNJ11 mutation. He is currently on an insulin pump, but the doctors would like to transition him, on a gradual, outpatient basis, to glyburide. He’s been through so much in the past month and a bit (he’s just 4 months old now), and my partner and I are hesitant to begin the transition. Do you find your son’s diabetes much easier to manage now that he’s on the oral meds? Has his quality of life improved? Did you notice any side effects? How is he doing now that he’s been on the meds for a few years?

    If you’re able to make a little time to get back to me, I’d really appreciate it. I’m feeling a bit alone in this, simply because his mutation is so rare.

    I hope you and your family are well,

    Tara Borin

Leave a Reply

Your email address will not be published. Required fields are marked *