Well I know many of you guys already have heard but I just wanted to give an update on our week. Monday morning I took Sydney to the doctor because of some odd symptoms she had been having. After doing a urine test that showed 3+ glucose (still not sure what that means--only that we are not supposed to have any in our urine) they then did a blood sugar test and her levels were 517...normal should be between 90-120'ish'. 517 is quite high. She had stopped sleeping through the night and was waking several times to go to the bathroom. She was eating so much food. She was always hungry. She had lost weight and lost some energy. And she was drinking so much. She was always thirsty. I got mad at her for crying in Walmart because she was so thirsty and wanted water. I said she was old enough to go to the store without a sippy cup of water. When we got home she drank 3 sippy cups of water in about 10 minutes. I thought she was getting sick and made the appointment with her doctor. I guess those are very common symptoms for Type 1 Diabetes.
Her doctor told us that Sydney has type 1 diabetes. He said that it is often confused with type 2 diabetes or insulin resistance but type 1 is different and works differently. With type 2 and insulin resistance, the body makes insulin but doesn't utilize it properly. Generally weight and poor diet has some effect on why these diseases occur. However, type 1 diabetes is usually diagnosed in children. Weight and diet did not bring on this type of diabetes. What happens is the pancreas, which makes insulin, is slowly shutting down until it no longer works. At this time there is no way to reverse it or cure it. Sydney has about 10% pancreatic function left but her doctors say w/in the next several months her pancreas will be out of commission for good. Because of this, she has to have insulin shots 6 or sometimes more times per day to give what her pancreas no longer makes. They don't know why this happens, I guess if they did they could more easily find a cure. They know genetics plays a part. They also told us that probably a year or more ago Sydney contracted a virus that triggered her antibodies to start attacking her beta cells (they are in the pancreas and help make insulin) and throughout the past year her beta cells keep dying off. These cells cannot be replaced once they are gone--this is type 1 diabetes. (At least from my limited understanding at this point)
So we have been in the hospital until today (thursday)...it has been a very long week. We have been in information overload as doctors, nurses, dieticians, diabetic specialists, pharmacists and several others have come to explain what is going on inside her body, how we can help her and how to deal emotionally and physically with this new part of our life. We have to measure her carbs at every meal and figure out how much insulin to give. For example for every 15 grams of carbs she eats, she requires 1/2 unit of insulin and if her blood sugar is high before a meal, we have to give 1/2 unit of insulin for every 100 points it is over 150. These ratios will change often as her pancreas works less and less. There is no magic number...input this much insulin and get this result. I guess it is like an educated guessing game. I am still confused on a lot of it and it is very very overwhelming. I spent most of the week crying and sydney kept telling me to "cowgirl up." She is on two different insulins--they work differently and for different amounts of time.
Some of the hardests parts have been learning how to give Syd her shots. She is only 4 and doesn't understand...I am 24 and am having a hard time understanding. It is hard to hear Sydney scream at us and try to hit us and tell us to go away or leave her alone. She doesn't understand what is going on. It really tugs at our hearts. She keeps asking when she will be better and can stop getting shots. She doesn't understand that she has to have these shots forever, it won't go away. In addition to shots and finger pricks, it is hard to hear her try and understand her disease. She told us that she won't touch anybody because she doesn't want to give them her sickness. She was so sad when she said this. She also asked if her friends will still love her because she has diabetes. One night in the hospital she really wanted some bread but her blood sugar was too high and we had to tell her no. It was hard to watch her cry and not understand why she couldn't have some bread. She kept saying that she would only eat one piece...it was a tear jerker moment. So needless to say this week has been quite the rollercoaster ride. She has had blood sugars well over 500 and then have them drop all the way down to 62 and then we have to treat her for the low blood sugar. Apparently that can be dangerous. Today before lunch her sugars were 575...she has such a small 29 lb body to have those high of sugars.
So we have all been thrown into this new experience...one that completely blind sided us. It has been really hard but I think we just need to give it time. There is so much to learn and to do--it is daunting--I guess that is why I have been such a baby this week. I keep hoping the doctor is going to call and tell us they made a mistake but since I have asked the doc this question several times and since he keeps telling me they didn't make a mistake, I guess I should quit crying and just deal with it. (easier said than done at this point.) Anyway we just wanted to update everyone on what is going on with us. If you have any questions just ask...not that I will be able to answer them...but I will try. I have added some pictures from Syd's hospital stay.
1 week ago