Here is the Nick Jonas piece from Disney:
Here is what six months of diabetic supplies looks like.
(Caution: I teared up, but that’s because I am directly affected. You might be fine. This video is not my own, it is pulled from YouTube.)
Our daughter had been diagnosed with Type 1 Diabetes just hours before. Rather than being treated locally, we headed for the children’s hospital in the adjacent state. After a long drive, including countless stops to go potty, a traffic jam above the Mighty Mississippi, and a wrong turn, we finally arrived at the Children’s Hospital.
We were ushered to the elevators, flanked by giant fuchsia columns, and taken to the eighth floor. By this time it was already past her bedtime. But she would not be able to fall asleep for a few more hours.
The nurse’s aid brought small scrubs, adorned with colorful fish, for her to change into. They were much too big and a hunt ensued to find some that wouldn’t slip off her emaciated body.
A woman in a white coat holding a clipboard, flanked by two others, came into the room. A dozen questions and a quick exam later and we were left alone in the room again.
We were told that the nurses would take care of us over night. They would be in shortly to retrieve us for blood work and begin round-the-clock monitoring and insulin injections to get her blood glucose levels under control. The endocrinologist would see us again in the morning.
My husband left the room, either to forage for a bite for us to eat or retrieve our hastily packed suitcases from the car.
A nurse came for my daughter and we walked with her down the hall and around the corner to a brightly lit sterile room with a tall white bed.
They were going to insert her IV and take blood samples.
I hoisted her onto the high table. Up until this point she had not been scared. Except for the blood draw earlier in the day, nothing had been invasive. But she became frightened as three nurses readied their supplies.
I was instructed to hold her down. Really hold her down. I lay my body across her torso and anchored myself across the bed. My head was next to hers and I told her it would be okay.
She let out the most blood-curdling scream, a scream worthy of a slasher movie. All I could do was lay across her holding her still, there was nothing I could do to take away her fright or the pain.
Her screams lasted for the length of the procedure and I thought my ear drum had burst. I honestly could not hear anything in that ear for at least a quarter of an hour. I consoled her as the nurses finished taping her IV in place.
We returned to our room and were met by my husband who had the good fortune to be absent during the painful ordeal.
The nurses went looking for a midnight snack for our girl. Cheese pizza from the Pizza Hut in the cafeteria that is open at all times.
We were able to settle in for the night.
My husband lay precariously on the window seat/bed. I climbed into the hospital bed with our daughter to keep her company over night.
She fell asleep watching piped in Disney sometime after midnight. I wish I could say I slept that night, but I didn’t.
The nurses came in every two hours to check her blood glucose level and then returned minutes later with an insulin injection as dosed by the physician. She stirred only briefly each time, exhausted from the long day before.
But she tossed in her sleep, rolling in big arcs from front to back and over again. Each time her IV line encircled her and I untangled the web of tubing. Each time I began to drift off, she turned again or it was time for the nurses to prick her finger or give an injection. But it’s my job as mother to sacrifice my sleep for her care and comfort.
In the wee hours she sat up in bed, dazed and foggy. A moment later she laid back down. She had urinated in her sleep, something she had not done in almost a year since potty training. The nurses and I changed the sheets and her scrubs while she continued her slumber, deep from exhaustion.
She awoke in good spirits as she does each morning.
Her glucose levels had been stabilized over night. They would continue to fluctuate wildly as the endocrinologist figured out the right concoction of short-acting and long-acting insulin. But the threat of ketoacidosis or convulsions or coma had seemed to pass.
We would soon find out that the hospital stay would include fun and games for her, a college-worthy short course in endocrinology and nutrition for us.
We had just been told to pack and leave within one hour.
Do you know what an impossible feat this was?
My car sat abandoned in the church parking lot across town. We had all piled into my husband’s truck an hour before. I hadn’t wanted her to sit alone in the backseat after the trauma of getting her blood drawn.
I had a baby at home, a month shy of turning one. I couldn’t take him with us.
Nothing was packed. My car was not gassed up. There were but a few singles in my wallet.
We dropped our daughter, just diagnosed with type 1 diabetes, off at our home where Grandma was on her daily shift as nanny and began scurrying around trying to put plans in action.
We are thankful everyday that we have a support system that allowed us to leave the baby in good hands without a second thought. That I didn’t need to leave detailed explanations and directives for his care.
When my car, packed with random things that I had thrown into suitcases for me and my husband, the miniature Tinkerbell suitcase packed with our daughter’s beloved Pony and a supply of socks and underpants, a stack of DVD’s and a new player that I had my husband run in and get while I packed (I didn’t care the cost, just buy whatever they have, this is going to be a long trip), finally left the driveway it was not within the hour as directed, it was much longer.
Our world was in upheaval and it’s difficult to organize an expedition under the given circumstances. Not knowing how long we would be gone. Not returning to work though we both said we would be back after lunch. Not knowing where we would stay and not wanting to leave her side. Not knowing the gravity of the situation or what was in store for our daughter over the next few days.
At some point I talked with the nurse at the children’s hospital who would be expecting us.
“If she begins to throw up, she may have ketoacidosis. This is an emergency situation. Do not come to admitting, but go directly to the ER.”
Up until that conversation I knew that it was serious, but I had not realized that it was a life-threatening, potentially emergency situation. And we had nearly two hundred miles of striped pavement between us and the care she needed.
When the doctor matter-of-factly rendered the diagnosis in her office earlier that afternoon. I assumed that we would be crossing town and checking into the hospital where both of my children were born.
We live in a decent-sized city with a major university and two hospitals. Yet our daughter could not be seen here. There is no pediatric endocrinologist and they will not see anyone under 18. Our hospital had a brand new pediatric ward, but there was no bed for her.
It was unfathomable that we had to travel so far for her care.
We took the baby’s car seat out so that I could sit with her. I would try to keep her entertained and would continually assess her condition.
We did not really tell her what was going on. We simply said that she was sick and that we were going to take a trip to St. Louis (exciting for her as we had a mini-vacation there the year before). I did not think that several hours in a car with a worried child would be fun for anyone. I instead made the decision to downplay it.
We always keep a training potty in the car. You never know when a three-year-old will have to go right now. Two symptoms of unchecked diabetes are extreme thirst and frequent urination. She requested drink after drink in the car and we pulled over time after time to let her go potty roadside. Sometimes we lucked out with a rest area or gas station in sight.
We stopped for dinner at a Subway. When you don’t eat meat, it is difficult to get food on the run. We quickly dined, used the restroom (again), and returned to the road.
Darkness was falling as we approached the Gateway to the West. When journeying to St. Louis from Illinois, travelers must choose to go left or right, ultimately converging back on the same road. Every time I come to this fork I take a gamble on which path was the better choice. We chose to go right.
Ahead taillights appeared stagnant in the dark and we soon came to a stop behind a long line of cars. We were stuck in traffic high above the Mighty Mississippi trapped between rows of cars. St. Louis was in our sight, but we could not proceed.
And then the unthinkable happened. My daughter started complaining about her tummy. She said her dinner did not feel good to her and she wanted to spit it out.
Please don’t throw up, please don’t throw up.
I had a stash of ziplock bags in the car, just in case. I readied one.
“Mama, I don’t feel well.”
“I know, baby.” A phrase I would repeat a thousand times in the next few days. Stroking her hair I assured her, “We’re almost there.”
What was I going to do? If she began vomiting I would need to get her to an emergency room immediately. We were sandwiched between hundreds of cars in the middle of the f—ing bridge above the Mississippi River.
All I could think was that I would have to call 911 and implore them to part traffic for us.
Luckily she did not vomit and traffic began moving again.
When you cross the bridge you have several choices of which way to go. When I spoke to the nurse I asked directions. When I spoke to my sister who has been to the hospital countless times, she gave the same directions: Take I-70 to Kingshighway.
This didn’t sound right to us, but we took I-70. It seemed like a good choice because there was minimal traffic. But instantly my husband and I both knew it was not the right way. We began traveling northwest and we knew the hospital was southwest.
I became more and more tense as the miles ticked by. We eventually came upon Kingshighway. We began traveling south.
If you are from St. Louis, you know that sections of Kingshighway are a bit seedy. Normally I wouldn’t care. But with my sick three-year-old beside me, all I could imagine was that our car would break down or we would blow a tire and we wouldn’t be able to get help. No businesses were open at that late hour. All doors and windows covered in bars. And I had no idea just how far north we were from the hospital.
Traffic light after traffic light we slowly made our way to the hospital. We climbed the circles of the parking garage decorated with cheerful animals denoting the levels and found a spot up high. We carried our daughter, clutching her beloved Pony, to the elevator and across the walkway.
The woman at the admitting desk said they were beginning to wonder where we were.
Always trust your mother’s intuition.
It was finally spring. The weather was warm. There was just a month left of preschool. My children were growing like the weeds visible from our picture window. We began spending more and more time outdoors.
One weekend my daughter developed a fever. A startling 103 fever. It bounced up and down, only responding to Tylenol briefly. It was the type of high fever that worries parents but leaves the nurses nonplussed.
I knew she must have been feeling awful because she asked for covers at night. She doesn’t like to sleep with a cover and when she does, her feet must be left exposed. She wanted to be bundled from neck to toes.
I insisted on bringing her in to evening pediatrics hours on the third day of the fever. This was a Monday night. The pediatrician, not our own, said it was just a virus and she would likely be fine by Wednesday.
Indeed, by Wednesday the fever broke. But then the baby’s temperature started to soar. We would endure a good 10 days of feverish kids.
On Friday I was scheduled to work in my daughter’s classroom. She needed to get out and blow the dust off. I led the class to the music room and we began to follow the instructor’s lead singing, dancing, and tapping sticks together to the beat.
I had thought my daughter was well enough to return to school, but during music she was not herself.
“Mommy, I need a drink.”
“Mommy, I’m so thirsty.”
Tears welled up when I told her to wait until the end of music before she could make yet another trip to the fountain.
That same night, the circus came to town. She had been looking forward to the circus for weeks. We left the baby with his grandmother and our threesome headed for the big top (dome). She donned the clown costume that was her only wish the birthday before. She told us that she couldn’t wait to try cotton candy for the very first time.
She seemed tired. She seemed hot and clammy. She was a different girl.
She did not want to hang from the trapeze bar.
She did not want to jump rope.
She did not want to meet the clowns.
We took our seats as the lights dimmed and the extravaganza began. She took one bite of the wonderful cotton candy and her eyes welled up. She did not want another taste.
She asked if we could leave early. I began gathering our things in darkness and managed to prolong the packing until the finale.
We brought our little girl home and tucked her into bed.
Over the weekend she perked up a little. The episodes on that Friday I figured were the lingering virus from the week. Her fatigue a result of feverish nights. Her thirst, dehydration from the high temperatures.
Mounting the stairs to her classroom, parents commented that she had grown three inches in the week she had been out. I agreed, she seemed to have grown up and thinned out.
A mere hour after falling asleep she awoke asking for milk. Another hour meant a trip to the bathroom. This dance began night after night.
“Go back to bed.”
“But I need a drink. I need milk. I need to go potty.”
“You need to sleep.”
We had a struggle on our hands that we had never had before. Our established bedtime routine no longer existed.
I told my husband that something wasn’t right. He shrugged it off as the lingering virus. Was that wishful thinking on his part? I had an uneasy feeling for about a week but kept thinking I was being too cautious.
If I denied her milk or a drink after bedtime, her eyes began to fill with big tears.
And then she drank an entire half gallon of milk in one day.
Upon that realization that she had consumed that much milk in 24 hours in addition to water, I called the nurse. That was a Thursday afternoon.
The doctor says that no child should drink more than 24 ounces of milk in a day.
I called my husband to stop by the lab and pick up a urine specimen cup on the way home from work. The next morning I dropped it off at the lab, but still none too worried.
I was scheduled in the classroom again that morning. Since my husband rarely works in the classroom, I suggested he take the morning off and go with her. Since it was also our turn to clean, I left work to go to the school. I figured I would be much more efficient since I know the cleaning drill and he would be able to return to work and I could drop her at home.
I began stacking knee-high chairs and tidying the classroom.
My cell phone rang. On the other end was the pediatrician. Not the nurse, but the doctor.
“Where are you”
“Where is your husband?”
“Actually…here with us.”
“Where is the school?”
I didn’t like where this was going.
“There was sugar in her urine. I was about to go to lunch and I was looking over the morning labs. I want you to go to the hospital (literally two blocks away) and get blood work done then meet me at my office at one o’clock. Can you do that? It is really important that you do this quickly.”
My hands shook as I flipped my phone shut. I told my husband to gather her things and that we needed to go now.
It seemed like everyone wanted to converse with us about this or that as I tried to usher my family out the door and to the car.
I went to the counter at the lab. I explained that I realize there are people in front of us, but that our doctor said this is urgent. Please get us in. She didn’t understand one of the orders. It wasn’t in the computer. She asked the person at the adjacent cubicle.
Please, can you call the doctor, can you call a supervisor, can you ask anyone else? We need to get her in. We are supposed to get to her office across town by one.
We waited nearly half an hour, eclipsing one o’clock. When we were finally called in we were met by two technicians and a doctor who came from across the street to perform the test that no one had heard of.
Her small body sat on the edge of a large table, legs dangling. He said this wasn’t going to be easy. I stood next to her trying to hold her still as he poked her index finger and milked it filling a pipette drop by drop with her ruby red blood. What took minutes felt like an eternity. He finished and left.
The two women readied their supplies. My husband sat on the bench with arm rests with our daughter on his lap. He gave her a bear hug to still her as the women drew vial after vial of blood from her small vein.
There have only been a few times when I have seen my husband cry as he did at that moment. I have only seen him like this with the deaths of his parents, one after the other.
I wanted him to be strong for her. I didn’t want her to sense his fear and be more frightened than she already was. He choked the hot streams back.
We finally made it to the doctor’s office. Our daughter sat eating her drive-thru grilled cheese and fries and drew detailed pictures of family members with paper and pens she had found in the doctor’s desk drawer.
She needed to go potty and my husband took her down the hall. I sat in the room alone with the doctor and heard the news: “Her glucose level in her urine was over 1,000. In her blood over 500. She has diabetes.”
That’s all I could say. I apologized and she shrugged it off. I said crap but I thought f—, which I would have been justified in exclaiming.
They returned and my daughter asked to go do something, maybe watch television in the lobby. I left my husband alone with the doctor.
In our absence he broke down as he heard the news. But I don’t think either of us really knew what was being said to us when we heard the diagnosis.
After a bit my daughter and I returned to the exam room to see what was taking so long.
The doctor said “You have one hour to pack your bags and hit the road for St. Louis.”