It was much worse. When my baby told me on the first Thursday of the school year that she didn't feel quite right, I kept her home from school, even though there was no fever. She doesn't make up illnesses. She loves school.
So, I had her rest on Thursday, and Friday she felt a little better. Saturday was not a good day. We ate our dinner out at a family buffet. She was miserable, but determined to eat. Strange. She ate a main dish, so I allowed her to have an icee drink, which led to more pain in her belly and more crankiness. (She wouldn't tell me that her belly was upset, because she was afraid I wouldn't allow her to eat! Remember this…) Then, upon leaving, we treated the restaurant to our daughter giving back everything she ate… right in front of their establishment.
Home for rest. More crankiness. I was eager for the virus I knew was in her body to hurry up and run its course. She had no fever - just like the stomach bug we all had a few months previously. While Sunday she stayed home from church to rest again, and seemed to being doing a little better, she still didn't eat much (because we didn't let her). She was terribly thirsty, and besides all the water she had, we made sure she had plenty of ginger ale to help her belly. And a new symptom was developing - wheezy breathing. She must have had a cold and stuffy nose on top of everything else.
Monday was bad. All she wanted to do was snuggle. On my lap, I noted that she would need to brush her teeth when she felt better. Her breath was pretty bad.
She could barely walk, but was moving fast enough to get to the bathroom several times. By evening, she was throwing up. More ginger ale. She wanted to spend the night on the floor in the bathroom. Writhing in pain, she begged me to take "it" away. How I wished I could! Throwing up did not make her feel better - it made her feel worse. That was a clue to me that something wasn't right. This was not a virus. Continuing to snuggle her, I felt her heart. It fluttered. Another clue. That was when I made my decision to call the doctor.
The on-call nurse called me back around 10 in the evening. It didn't matter how late it was, because I knew I was keeping her home from school the next day. The nurse felt we should head over to the the ER because she could have been dealing with a blockage. In my pajamas, I scooped up my baby, who could no longer walk, and brought her to a very crowded hospital.
At this point, she was screaming in pain and frustration. That might have been a good thing, because we were called almost immediately. However, my little one had deteriorated to the point where when she needed to go to the bathroom, I had to hold her up while doing the whole procedure for her. Pulling up pants while baby girl can do nothing but slump? Mama got a work out. Also, this was when the incoherent speech began. At that time, I had no idea the dangerous waters she had entered.
It was only a month ago, but some of this night was a blur. I believe the great ER admitting attendant finagled to find us a room somewhere between 11-11:30pm. I remember my baby lying on that big bed while grappling with the thought that she had lost 20 pounds. (Keep in mind, we are talking about a 7-year-old who started at 60 lbs. earlier in the summer.) I remember looking at her ghostly white face and thinking about how deeply her eyes were sunken in.
Several great nurses worked with us, and it was immediately determined that she was dehydrated. How can that be? I thought. All she's been doing all summer has been drinking water.
The dehydration provided a new problem, one that would cause trouble all week. This tiny, 40-lb. child with roll-y veins would prove to be a challenge for any professional looking to place an IV. At first, she found this needle-digging painful, but after the first hour or so, she was too out of it to even notice.
A doctor had been in to ask the same questions I had already answered for nurses and other attendants. I don't even remember what they were now. He mentioned CAT scans and testing for some scary diseases. I'm pretty sure God let those diseases float in one ear and right out another. I have no idea now what he said.
What I do remember is the nurses calling for Alan - the Super Nurse. He remained the only person able to start an IV on her through the week. (This includes anyone on the pediatric IV specialist team in the regional ICU we went to.) It was Alan who noticed her wheezy breathing and said, "Has anyone tested her glucose?"
No one blinked. Someone immediately moved to get a nearby reader and did what seemed to be an instantaneous test.
The number, the moment, that changed our lives. I knew a little about diabetes. I knew they were testing her sugar level and that they expected to see a number between 80-100.
561. Where it all changed. Treatment now had a direction. Of course, I was in a daze, still dwelling on that number that I knew was bad. There were going to be no more tests, not at our local hospital, anyway. Now knowing how very sick my daughter was, and had been for some time (her A1C was 14.0), the doctor was hurriedly making plans to get her transferred to a hospital with a pediatric ICU, an hour and a half away.
We thought she had a virus.
Really, she had Type 1 Diabetes. And she had gone into Keto Acidosis (DKA). Doctors were now concerned, as I would later find out, about swelling in her brain and the permanent damage that it could lead to.
She must have been fighting this through the whole summer. My baby was literally starving, even though she was terribly hungry all the time. Her pancreas had shut down, and was no longer producing the insulin needed to get sugar, needed for energy, into her cells. So, instead of going where it needed to be used, the sugar from the food she ate sat in her body and broke down into acid. Vomiting, urinating, and wheezing were all her body's ways of trying to get rid of all that extra acid. It wasn't working, so the acid went into her blood, resulting in DKA.
At the regional hospital, I was told she had one of the lowest pH's (most acidic) they had ever seen in a child.
Why did she lose so much weight, even though she was so hungry? Since her cells weren't getting the sugar they needed, they fed off her reserve fat and eventually muscle. Breaking down the muscle, leaving acidic residue in her blood. Her cells weren't getting fed. She was literally starving.
Once the ambulance got us to the next hospital, a pediatric team got working on her right away. The paramedics left us and were replaced by several doctors and nurses. It was going on 6:00 a.m., and neither my baby or I had slept at all. For her, it was because even though her speech made no sense, the doctors were afraid of her losing consciousness. So they kept her awake. For me, I was just too scared. We wouldn't be able to sleep through the night for a few days more.
Another round of questions came for me and for her after we arrived. I was asked the same questions I had been asked a few times before now, about family disease history (of which there was none) and so forth. She was asked questions to determine her lucidity, such as her name and who I was. I was so nervous about her answering correctly, I could have thrown up.
Throughout the next day, she began to "transition" as they told me, out of DKA. The vigilance and constant presence of the nurses made me nervous. They were worried too. Fear was an ever-present guest in our hospital room. I was taken aside early the first day to be told that visitors should be kept to "family only" during her recovery. Fear didn't get the memo, because it is not part of our family.
The many machines she was hooked up to fed her the liquid, medicine, and nutrients her body needed, while others monitored her heart, blood pressure, and other vitals. She still has some residue of the tape marks on her little body.
As she came out, through the week, her breathing became more normal, her skin tone less ashy, her face less sunken, and her feet less blue. All good signs. Then, as more tests needed to be taken, more blood needed to be drawn, and with her awareness increasing, the blood draws drew many tears and wails in addition to the scant amount of blood they were able to get. As painful as it was to watch her recognize the pain, I was thankful that she was with us and able to cry.
Eventually, the IV fluids and insulin were removed, and the training began. I was thrown into the world of shot giving. God made me a fast learner as I needed to be. But watching trained nurses struggle to get enough blood from her fingers on a prick should have given me an indication of what we had to come at home.
The turning point and highlight for my little girl was a visit from the therapy dog, Jasper. I am so thankful for Jasper. As he jumped up onto her bed, ready for a loving petting from tiny, bandaged hands, he had no idea he had brought the first smile to her face we had seen in days.
In truth, we were beginning to see what the high sugar level and acid in her blood had done to my little girl over the summer. Screaming fits and toddler-like tantrums had become such the norm, we joked about walking on eggshells. The reality was, she just felt miserable and had no way to tell us that her pancreas had stopped working.
After she was discharged, we spent the next day in "diabetes boot camp," learning about the disease, the basics of her care, and most importantly - how to feed our child. Our lessons have been reinforced daily.
The first few weeks at home have been tough - especially on grumpy days when her sugar is high. I was asked in the hospital, repeatedly, what questions I had. At the time, I knew too little to know what to ask. Now, I wish I had a live-in nurse just to answer questions (and if she could do pricks and shots too, that would be great.)
We haven't really told her much about what "forever" is going to look like for her here on earth. That's because we are sincerely hoping a cure is on the horizon soon. If nothing else, this new diagnosis has brought us to our knees much more often. He never left her, and we are sure He will always be by her side. God has been good - now that she has the medicine she needs, she is feeling much better than she had been through the summer. Our permanently grumpy little girl has gone away and been replaced by one more aware of what her moods mean and how to control them.
We thought she had a virus. We were wrong, but God saw us through and saved my baby from what could have been something very bad. I hope this post has given you some ideas of symptoms to look for if your own child gets sick and you worry it could be Type 1 Diabetes. I will reiterate it by posting a list soon. Until that time, give your child a hug, and remind him or her that God is always in control.
Passion Under Grace,