T1D Diagnosis: A Parental Experience

On Tuesday, July 7, 2020, my youngest daughter’s pancreas officially retired. It was a long process in the making, all the signs were there, but T1D was never on our radar and there was an explanation for everything. She was in a growth spurt, so getting thinner was just a byproduct of that, was our thought. Same was said for her eating all the time. Then there was the fatigue, given the Covid-19 pandemic, we just thought she was struggling to find a new normal within her world. We also thought that she was just a little depressed because she could not see her friends after the simple stroke of a Governor’s pen. We were able to justify every symptom as something else, and it is very easy to cast blame on yourself. T1D was never even a thought.

Leading up to that Tuesday, my daughter was just a normal 11 year old with aspirations of being a professional figure skater. We dropped her off at camp with her older sister on that Sunday, and everything was fine. The following day, they took a two mile hike up the mountain to a camp site by a waterfall, had a paint fight, quick shower in the waterfall, and then camped out on the ground under the stars. She had a little bit of trouble breathing during all of this, but nothing that could not be explained by a lack of being in shape and the cold water. The night was a rough one, with little to no sleep, a little chill in the air and unknown surroundings, she struggled through the night. Waking up on Tuesday, her breathing had intensified, and with the current Covid-19 protocols in place, the nurse was called to come and get her.

The first phone call to my wife came in around 3:15 pm, and it was just a simple update that my daughter had spent most of the day in the nurse’s office to try and slow her breathing. Again, not thinking anything about T1D, we chalked it up to her being anxious about going into the lake and a bad night of sleep. The nurse agreed to try some anxiety techniques to help slow her breathing, and she would keep us updated. The next phone call came at 5:15 pm, and the nurse said that we had to go get tested for Covid-19. My wife immediately got in her car and started the two hour trek to the North Carolina mountains to take her and get tested.

During the trip, my wife and I kept in constant communication and discussed several different options. I made the comment that I wanted to talk to the nurse and my daughter to get a better gauge on what was going on. For the record, it is almost impossible to get in touch with anyone after hours at a residential camp. Finally, through the magic of the internet, was able to get someone to have the nurse contact me. I spoke with my daughter, and with every word she struggled to catch her breath. The nurse got back on the phone and I asked her if Covid-19 was a real possibility, and her words back to me altered my thought process. She said, “I don’t think so, but something is not right and she needs to be looked at.” I had her put my daughter back on and I told her mommy was on her way, and they’d be coming home after a quick visit to a hospital to just to double check everything. I called my wife back and told her to take her to a local children’s hospital, for no other reason than if there was something much worse going on, she would be in a great spot.

It was 9:30 pm by the time we were able to all meet at the hospital, and this incredibly thin and pale child looked sick. For the first time in months, I could tell that something was not right. I still kick myself for not noticing everything sooner. We thought that the possibilities of acute anemia, Covid-19, the flu, or something else were to blame. Diabetes? Never even crossed my mind. They immediately started testing for everything under the sun, and after about 15 minutes, a nurse walks in and tests her blood sugar. When I inquired about the reason, she just replied with, “the doctor told me to rush in here and get it.” It registered in the high 500’s. She eventually fell asleep, continuing to breath like she had just run a marathon in a full sprint.

After the blood sugar test, we waited for about 10 minutes. The attending physician working the emergency room walked in and explained that they were going to run all the tests, but they wanted to run everything for Diabetes first because she was 95% certain that our daughter was experiencing Diabetic Ketoacidosis. She could not confirm until all the tests were done, but that was the leader in the clubhouse. That was also when we found out that we would be spending some time in the hospital, though no one knew exactly how long it would be. One of the doctors told me to prepare for 2 weeks, but hope for 1 week. At this point, everything changed.

We had thousands of questions for the doctor, and I will not go through what DKA is, but you can read it for yourself here. Essentially, her body was producing ketones that were poisoning her because they had no where to go. Her breathing was her body trying to release the acid. After what felt like an eternity, but honestly was not that long, the doctor came back in and said we are going to move her to ICU, but not to be worried, it was just for the around the clock care she needed in order to get her levels back up. While this was a dire situation, she was in great hands and the outcome was more than favorable. Had we waited another couple of days, the outlook would have been much worse. While this news was a shock, we were grateful for a doctor that was able to diagnose so quickly and proceed with a game plan to get her back to healthy. After a few more minutes passed, we were on our way up to ICU to start the long journey of beating the DKA.

It is always a shock to see your child in pain, but this was on another level. She was hooked up to several machines, nurses around her all the time, unable to catch her breath and scared out of her mind. Both my wife and I would have done anything to take her place in that moment. In ICU, the fight was on and she was a trooper. Every hour, her blood sugar was taken and she had to answer a series of questions to ensure there was no swelling of the brain. Every four hours they proceeded to take blood to test. This was an emergency situation, but she was in great hands and no one was overly worried, with the exception of her mother and myself.

We spent a total of three days in ICU, and with each passing minute she improved. Finally, the nurse told us that all the acid was out of her body, and once her bicarbs hit 17, she could move to a general hospital room and start the insulin therapy herself and remove the drip. A few hours later, we got the greatest news we could hope for, her bicarbs were at 17, she was Covid-19 free (they had to test for it), and she was moving to another room. For reference, her bicarbs at the time of her ICU visit were at 2. Once you hit zero, the dire situation we were in becomes potentially fatal, hence the reason they put us in ICU with around the clock care.

After a great night of sleeping without being poked for blood sugar, she ordered breakfast and was ready to chow down. However, her liver tests came back with some concern, so more tests and an ultrasound were ordered. Once that was done, it was time to actually eat. Finally! She was slowly getting to where she needed to be, and you could see her improvement from just a few nights prior. After breakfast, our diabetes education started in earnest.

We learned about testing, the math involved, counting carbs, what to expect, why it is important, etc. We started to find out that others with diabetes, or loved one with diabetes, at every turn or message. Having T1D is like being part of a club you did not realize existed until they let you in. Once you are in, it is remarkable how accepting and helpful everyone is. I do not want to downplay this, T1D is terrible and I hope they find a cure, but it will not stop you from doing what you want to do. It is weird to say, but my daughter will actually be healthier with T1D than she ever was without it. It just adds some steps to her day that she did not have to worry about previously.

During the educational process, the results of her liver test and ultrasound came back with enough of a positive result that it did not require us to be in the hospital any longer. We would have to keep an eye out for some other symptoms, and a follow up lab, but nothing that warranted another night in the hospital. Once that news came back, we were discharged and out the door with a quickness! Adjusting to life at home with T1D has not been smooth, but it is a process that will have many ups and downs along the way. We understood that coming into the process. It has been a very long week since her diagnosis, however we are thrilled that she was so strong and is still here with us.

It needs to be said, T1D is not a death sentence, in fact, it is the opposite. I have found many successful individuals that have dealt with this chronic illness for decades. While the whole experience was incredibly stressful and scary, our daughter is facing it with a grace and understanding that not many adults could. She will not just survive with T1D, she’s going to thrive with T1D.