Thursday, August 14, 2008
Ginger Saves the World
Our youngest daughter, Ginger, is nine. She is a cute little bundle of energy, on the go from morning until night, full of chatter, silliness and is the ultimate girly-girl. She is a wicked soccer player and also does gymnastics, basketball and is on the school jump rope team. I have been tired since the day she was born, just trying to halfway keep up with her. At home she plays the spoiled baby of the family to perfection, driving us all crazy with her demands (which we seldom give in to, by the way) but out in public, she is a leader, self confident and personable. She has always been incredibly healthy, having never had the need for antibiotics, no ear infections, no strep, no flu, only a mild cold once a year, maybe. She is very proud that she has never missed a day of school in four years.
Lately though, she hasn't been herself, sleeping all day, almost every day since she got home from camp just over a week ago. On Monday, after realizing that it wasn't just some kind of bug, or even mononucleosis, which we considered, I took her in to the doctor and she had blood drawn and a urine test. We were supposed to go back in a week for the results but by the time I got home from the appointment the Dr. was calling me. At first they said she had sugar in her urine and that we would have to go to a diabetes center in Syracuse the next day to have her examined there. Even though I crossed my fingers hoping that it was Type 2 Diabetes, which is somewhat more manageable than Type 1, I just knew immediately that it was Type 1. Which was confirmed when they called me again after getting the blood sugar results (845, normal is 70-150 or so), and finding ketones in the urine, and insisted that I bring her to the ER immediately. They wanted to stabilize her and then transport her to Syracuse, where there is an excellent diabetes center. Our small hospital does not have a pediatric endocrinologist and they made it clear that we would have to go elsewhere for care. I appreciated their honesty but secretly panicked about having to go to an unfamiliar city for all of this.
Doug and one of our sons had just left very early that very morning for Wyoming, along with a friend and his son. I called him, had myself a good cry and began to make some plans. I found people to take care of my other son and daughter, the house, the pets. I packed a few bags since they told me that Ginger would be admitted to the hospital and I even thought to gather relevant phone numbers. We got to the ER and Ginger received her very first IV, not easy for a scrawny little girl like her and she was very upset. Almost right away my friends showed up (many of our friends here are doctors at the local hospital and word traveled fast once I called someone for help with the kids) and every time someone came in I teared up. One friend loaned me her cell phone (mine has a bad battery) and even went out to our house to get Ginger's blanket that we had forgotten. I am so thankful for the friends we have here, I hadn't realized how many we had until this day. And even though Ginger wasn't feeling well, I could see that she enjoyed being the center of attention! She would have sashayed around the room greeting everyone if she could have.
Anyway, the ER doctor set up the transport to Syracuse and we left in an ambulance (no sirens no lights, nothing too dramatic I am afraid) and unfortunately no one told me that riding in the back of an ambulance is just like being in a boat, which would be fine except I get terrible motion sickness in boats. I didn't vomit but it was close a few times!
We arrived at the ER in Syracuse at about 10:30pm. the first thing we saw was a guy handcuffed to a gurney, surrounded by two police officers. Great. They took us to the pediatric section and I had to repeat our story to various doctors, residents and nurses about 27 times. I also heard a simplified description of diabetes about 27 times. It took us about 3 hours to be moved up a room in the pediatric ward, and I can't even begin to tell you all how exhausted I was by that time. Ginger was in much better shape than I, having slept through most of the drive and during our time in the second ER. The insulin they had started her on was helping too. Her blood sugar was gradually dropping and they tested that every hour for the rest of the night. I got about 4 hours of bad, interrupted sleep.
By morning her blood level was normal and she was starving! She had breakfast and the endocrinologist came in and we discussed the situation. Another woman from the diabetes center visited later on and gave me a tutorial on insulin, syringes, blood glucose testing, ketones and well, our new lifestyle. She was great and I sure wish I could remember more of what we talked about, it was a good thing she gave me lots of books and handouts. She told me that all of this would soon be routine and I almost believed her. She also assured me that we could not have handled this differently. I had noticed that Ginger had been drinking more water than usual over the summer, and even though I knew that was a symptom of diabetes, I had simply attributed it to the summer, soccer and her other activities. She said that even if I had brought her in at that point she probably would have been monitored but not diagnosed with diabetes and it would have had to get to this same spot anyway, before she would have been diagnosed. Even though that helped me feel better, I still feel bad about not doing something sooner. I get to keep my mom's guilt, thank you.
In the afternoon the doctor came back and said we could go home. I was terrified (not ready for this responsibility!), yet so happy to hear that. A friend drove up to get us, another friend had driven my car home from the hospital in Cooperstown, and someone had even cleaned up my kitchen. The last few days have been filled with visitors, get well gifts, phone calls and well wishers. This morning I drove to the airport to pick up Doug. He could have stayed the week out west as planned, but he felt awful being there during all of this and took a red eye back last night. I could have managed but am glad he is home anyway. Our son stayed with our friends to finish the trip and he will be home on Saturday.
Last Monday seems like it was 6 months ago and this has been the slowest week ever. I have to be careful at what time of the day I read about Type 1 Diabetes and what it entails. If I read through the books in the evening, when I am tired, I get very upset, overwhelmed and afraid of what the future may bring for Ginger and for us. If I read about it in the mornings when I am rested and more energetic, I am confident that Doug and I will handle this just like we have handled the difficulty of raising a handicapped child for the last fifteen years, as well as the illnesses and deaths of our own parents.
There is much to work out, including school, bus, sports issues, but luckily there is some time for all of that before school starts. Our other kids need to learn about all of this too, including what to do in an emergency. And I have accepted that there WILL be emergencies. She has to have four shots of insulin every day, for the time being anyway, and there will be much tinkering to get the doses right. We have to keep a kit at school, which includes an emergency injection for hypoglycemia, Ginger has to always have a few snacks with her, and she must always wear a medical alert bracelet. We have to go to Syracuse every three months, more often for the next few months, and she will soon have to have yearly eye exams as well as other tests. And did I mention how afraid I am?
Ginger is awesome. She is almost back to her old self and in fact I had to tell her to stop bugging me more than a few times while we were in the car today (she NEVER stops talking in the car). I think we were both happy about that bit of normalcy! She insists on doing her own blood sugar testing already and I think we will show her how to give herself her own shots soon. She is giddy about the pink leather medical bracelet we picked out and is hounding me about when will we go shopping for a case for all of her kits. Thank goodness for girly-girls! Even though I would have preferred that Ginger had had a bug or even mono, I am incredibly thankful that she doesn't have an illness that is even worse than diabetes. I am so grateful for our friends, for Doug and for the health of all of us. I now understand why I didn't knock myself out to get more going with my art this summer and fall; I must have somehow known that I would need time. Time to spend with Ginger, learning about diabetes, how to advocate for her needs and watching over her for awhile. I am very thankful that technology had made self monitoring so much easier than it used to be and am very glad that the needles are so tiny that they seem almost comical. And on a more shallow note I am very glad that we did not have to be transported to Syracuse by helicopter. I would have had to have drawn the line there. Heh.
So even though this is a big one folks, I still feel lucky in so many ways.