The Day that Changed Our Lives Forever!
Our journey with Type 1 Diabetes began around 9:00am on Tuesday, February 8th when an emergency room doctor, after a couple of brief tests, began by saying “I hate to be so blunt but your daughter is in Diabetic Ketoacidosis (DKA) and is severely dehydrated…” We both just looked at him, waiting for more information – specifically that she would be okay and ready to go home in no time. It wasn’t that we didn’t hear what he said, but rather we just didn’t get it. You see, neither of us were experienced with diabetes. We have no relatives with the disease. He had to be wondering why we were not reacting at all. The seriousness of the situation suddenly became very clear to us when he continued with “…and it is life threatening at this point.” In that instant everything changed. We didn’t know what to think, what to ask, what to do. We still had no idea what her diagnosis was and weren’t sure what was going on. He then told us that her blood glucose was 1,600. Again, this didn’t register with us as we didn’t know what a normal reading was. As we began to get more pieces of information we quickly realized that we likely arrived at the emergency room with little time to spare. Even though numerous members of the emergency room staff were working feverishly, Emerson’s condition was deteriorating as we stood there. At one point three members of the hospital administration showed up to see if there was anything they could do for us. It was clear that they weren’t just passing through the area but rather were there because they had been made aware of Emerson’s condition. Not long after they left, Emerson became unresponsive to stimuli. A doctor from the Pediatric Intensive Care Unit (“PICU”) had arrived and was visibly concerned – at one point exchanging a look of hopelessness with the ER doctor. Jim noticed this and told me I should probably call my parents to suggest they come to the hospital - as he figured it might be their last time seeing her. The doctors began to suspect brain swelling. They took her for a CT scan. Normally the wait for the results could be lengthy, as all scans from multiple hospitals apparently go to a single location to be read. Her condition allowed them to prioritize Emerson’s at the top of the list. After a brief wait the results came back – no brain swelling…yet!
Soon after, some of Emerson’s grandparents arrived. We told her they were there to see her and asked if she wanted them to come in – all the while expecting to get no response. But her eyes opened slightly and her head nodded, if only barely. The hospital staff in the room were encouraged by this and we were elated. Her eyes were only remaining open for brief periods but this seemed like progress. As more time elapsed, and the fluids they were giving to rehydrate her were beginning to have an impact, her blood glucose started to come down. As you can imagine, when coming down from a blood glucose of 1,600 changes can happen quickly, and as we soon learned – too quickly. The doctors again became concerned about brain swelling, this time due to the rapid change occurring in her fluids.
A room finally became available in the PICU so we were moved there. This portion of the hospital was a Riley Hospital for Children so we were very comfortable with this move even though things seemed very unstable at this time. It took an extremely long time for Emerson’s blood glucose to get down to a level that anyone was comfortable with, as on multiple occasions they had to inject a sugar solution through her IV to keep the rate of change at an acceptable pace. It was made clear to us that we were not yet in the clear as if they did not manage this properly brain swelling could occur. During this time another factor became the doctor’s new primary focus – Emerson’s sodium level, which had become very elevated. The excessive urination that led to her severe dehydration had left a significantly high concentration of sodium in her body. Bringing the sodium level down too rapidly could also induce swelling in the brain. It wasn’t until the next night that doctors were comfortable with where all of Emerson’s readings were. We were now able to focus some attention on our new reality and begin our crash course on managing Emerson’s health.
Many are probably wondering how things got to this point. So let me go back in time to when the first signs occurred. Just 10 days prior to our trip to the ER, Emerson went for a visit to one set of grandparents. We were going to surprise her by painting her room pink – a request she had been making repeatedly – so we asked if she wanted to go see grandma and grandpa on Saturday and come back home on Sunday. Of course she agreed because this meant an opportunity to go entertain someone other than mommy and daddy, to go out to eat and play with their dogs. After lunch on Saturday my mom mentioned that Emerson drank several cups of lemonade at lunch. We hadn’t observed this prior to her leaving. When I talked to her again later that day she said the heavy drinking continued, coupled obviously with a lot of bathroom visits. We assumed this was Emerson doing whatever it took to impress grandma and grandpa because they had told her early on that she was drinking very well. That is how she operates normally – always out to impress. But when we brought her back home on Sunday the excessive drinking continued. As we went through the week, the level of drinking varied but was definitely more than we had seen prior to this period. It also meant we were up a lot each night making trips to the bathroom. Towards the end of the week, Emerson became more restless at night. Over the weekend we allowed her to sleep with us in an attempt to get her to sleep better. Other than the constant thirst and restlessness Emerson acted and looked fine. Sunday night she really tossed and turned a lot but kept insisting that she felt fine. On Monday morning she was tired but ready to go to preschool. We took her in that morning feeling like everything was fine. We got a call a couple hours later saying that she had a slight fever, wasn’t very engaged, and was choosing to sit on the couch in her room’s “library.” We picked her up and I stayed home with her the rest of the day. She vomited one time during the day but other than that just seemed fatigued – since we were in the middle of flu season, we attributed her sickness to the flu. She seemed to feel better as the day wore on and was playing normal in the evening hours. Once we went to bed things seemed to get worse. Emerson was constantly tossing and turning, at times letting out minor moans. Her breathing also became heavy on an intermittent basis. We repeatedly tried to determine where her discomfort was but she would only say her tummy didn’t feel good. During that night both of us were up at different times searching online for information that might help us diagnose her. At one point Jim even came back to bed and mentioned diabetes but neither one of us thought that was even a possibility and discussed it no further. At one point Emerson wanted to be carried to the bathroom. Jim picked her up and immediately commented about how light she felt. It was obvious that she had recently lost some weight. In the morning we got up at the normal time and discussed taking Emerson to her doctor when they opened at 9am. But as Jim got ready for work, I wondered if we needed to do something sooner. Her breathing was getting worse and she seemed to be struggling to keep her eyes open. We decided to get packed up with a plan to be at the doctor’s office as soon as they opened rather than waiting to call them. As we got things ready to go Emerson’s eyes appeared to be rolling back in her head. Our concern quickly increased. Her speech had become very slurred. She actually nodded affirmatively when we asked if she wanted to go to the doctor. As we pulled out of the subdivision, Jim looked back and yelled “is she still alive?” Her head had fallen over, eyes were rolled back in her head, and it didn’t appear she was breathing. I climbed in the back seat to see what I could do as we continued towards the hospital. We didn’t know if we should call an ambulance and pull over and wait for it but decided we needed to keep moving towards the hospital instead. Unfortunately we were dealing with the normal morning traffic and it seemed like we were sitting still. Emerson was responding very little. Every time I got her to pick her head up it would just fall back over. We didn’t know what was going on! Finally, we arrived at the hospital and you have already read how things unfolded there. So that is it. Only 1 day prior did Emerson seem like anything was truly wrong – but all the signs were consistent with a minor flu or something similar. We get to the hospital and she has a 1,600 blood glucose. That quick. People experienced with the disease would say that the heavy drinking the week before was a strong signal, but we were attributing this to her getting focused on something for a short time like she normally does as she seemed completely fine otherwise. So for us it was 1 day – even less than that when you consider it wasn’t until the overnight period when symptoms of something other than the flu became apparent.
Luckily, Emerson bounced back fairly quickly at the hospital. After spending two days in PICU, she was moved to the regular pediatric unit and was discharged two days later after we completed our diabetes education classes.That one day changed our lives forever!