Our Type 1 Diabetes Diagnosis

When I left you in our last post, we had just learned that Baby had Type 1 Diabetes, and our family would not be moving to Okinawa, Japan.

There was still a lot in the air, would Paul go without us? What would happen to us if he did? What did this diagnosis mean? What about the dogs (who we shipped to Japan in April)? And the stuff the movers just picked up to ship to Japan? We were scheduled to move out of our house in a few weeks, we had plans to sell our cars, we had potential buyers for both.

First I’ll start with Baby’s diagnosis. Type 1 Diabetes. It’s not something we could have prevented. It’s different from the diabetes that you develop later in life, often as a result lifestyle choices. This had nothing to do with what he ate, or how he spent his first year of life. It just happened. His pancreas stopped producing insulin. Likely his pancreas has been slowly dropping in this function for months. Some of the symptoms from decreased insulin are also symptoms that tie in with growing babies, like increased hunger, decreased sleep. These are things that you wouldn’t rush off to the doctor for. But even if we had, even if 4 months ago a doctor had told us that Baby’s pancreas wasn’t doing as well as it was supposed to be doing, there is nothing that would have ‘fixed’ it. This was pretty much inevitable.

So now we found ourselves in the hospital, trying wrap our heads around this diagnosis, and answer all the questions I listed above. I think the stress of figuring out all of the stuff about our move to Japan, sort of overshadowed the diagnosis. Not in a bad way, but in that we didn’t go straight into heartbreak, we weren’t devastated. Our first step was to swiftly go into action to try to deal with our move.

In short we were able to quickly get enrolled in EFMP, which allowed us to speed up the process of getting Baby officially medically disqualified from moving to Okinawa. This disqualification, although depressing, was vital to our goal of having Paul’s orders to Okinawa modified so no one would have to move. We also had to figure out the situation with the dogs. I haven’t talked much about it on social media, but in April we made the decision to send the dogs in advance to Okinawa, so they would be there when we arrived. Most airlines have a heat embargo during the summer from late May-late September. They do not allow snub nosed dogs to fly at all. This is because they overheat easier, thus it’s more dangerous for them to fly. I immediately got to work with our transport company to get the dogs back to America if we had time, because they had already embarked on the most expensive Japanese vacation any dog has ever had. Time wasn’t on our side though and we were only able to get one dog on a last minute flight before the heat embargo, so the other is being kept with the dog transport until she can fly again. It’s not a perfect situation, but it’s the safest for her.

By the time we got all of the above figured out, we had already begun to work on a routine, we had already had our ‘crash course’ in T1 Diabetes management. We were fast learning about insulin, glucose, testing Baby’s blood, checking for ketones, how to properly do injections, how to use an insulin pump, and how to count carbs. We had a few setbacks, we had some really high highs and some lows, but after 9 days we were discharged from the hospital. I really have nothing but positive things to say about the hospital. We had great doctors and nurses, we met some great people, and we are positive about Paul’s future. We have been told over and over, because he is so young, and we are able to establish his care properly, he will never know what life is like before diabetes. Although things seem difficult now, his life should be easier because this happened while he was so young, versus it happening in 5 or 10 years.

We are now home, establishing our new normal, and learning how to keep everyone healthy. We have had a few setbacks, but we are back on track this week.  We have been working on putting our home back together, it took a while but we were able to get our stuff that was packed up the morning of his initial hospital trip back, before it left for Japan.  Baby Paul had his first birthday a couple weeks ago, and he got more toys and clothes than he could ever imagine.

We are still learning, but we will continue to do our best.

We aren’t moving to Okinawa

 

We were supposed to fly to Okinawa next week. We had planned, gone through all the screenings, gotten passports and airplane tickets, we were ready. A couple of weeks ago, on a Monday morning, the movers came to pack our unaccompanied baggage, which is the stuff we wanted there when we got there. Before this we had all been sick, for about 2 weeks all 4 of us had been fighting a nasty cold. That day baby Paul was really fussy, but he was sick like the rest of us. As the day wore on, the movers came and left with about a quarter of our belongings, the baby seemed okay just cranky.

Later in the afternoon everyone was resting and I took the baby outside to play and I noticed he was randomly gagging, sort of dry heaving. I decided he should nap too. While trying to get him to sleep Paul noticed he was breathing rapidly, shortly after I couldn’t get him to latch on to breastfeed. This was the most concerning symptom because he’s never in his life refused the breast, but it was like he couldn’t latch because he was struggling to breathe.

I rushed him to the ER. I believe they thought he had RSV, he was immediately given a nebulizer, IV fluids and a chest x-ray, which came back normal. The next step was the doctor tested his blood sugar. At that point the doctor told me I needed to call my husband because my baby was going to need to be transferred to the pediatric ICU at the larger medical facility about an hour away. They said he was in Diabetic Ketoacidosis. I didn’t really know what any of this meant, except that he almost surely had Type 1 Diabetes, and if that were true everything was about to change.

Within a few hours we were in an ambulance being transferred to the hospital. Baby was stable but his blood sugar was still way too high, and he still had a huge amount of ketones in his blood, which were basically poisoning his kidneys and liver from what I understand. Once we got to the ICU we quickly met several doctors and nurses which told us there was almost no question he had Diabetes. We spent all night testing babys blood sugar hourly, checking the levels for ketones, and adjusting his insulin and glucose dosages. The first night they wouldn’t let me breastfeed him because they needed to be in control of his glucose and insulin while they rid his body of the ketones that were poising his blood. It was a very long night with pretty much no sleep.

The next few days are a blur. He was officially diagnosed with Type 1 (T1) Diabetes, and we rushed to get him enrolled in the military program that helps our family when we have a family member with special needs; EFMP– Exceptional Family Member Program, we needed to be enrolled so we could try to stop our move to Okinawa because they do not have the military medical professionals on the island to treat insulin dependent diabetes.  We knew right away, with Baby’s diagnosis the kids and I would not be moving, but we were desperately trying to make it so Paul wouldn’t have to go without us.

So that’s why we aren’t moving to Okinawa. I am still very sad, for a lot of reasons. I’ll write another post and finish the story later this weekend. I need to dry my eyes and drink some coffee right now. I’ll leave you with a picture of my precious little boy, being a brave dude with his little robot arm, that protected the only IV line that he didn’t blow out the first few days in the hospital.