Again, I wasn't sure if this should be a personal photo or not, but I selected one that relates to me.
Diabetes supplies. Both my husband and my youngest son are Type I diabetics. In simple terms, it sucks. I did not have much experience with diabetes before meeting my husband. I had some knowledge due to working at a nephrologist office and knowing a few people with Type II diabetes, but none of that prepared me for how emotional the disease is. I think I adjusted pretty well to dealing with my husband's diabetes. I wanted to learn as much as I could, I was interested in how he took care of himself, and what caused problems with his quality of life. When we met, he worked as a paramedic. We learned quickly that the emergency services lifestyle did not work well with him taking care of himself. After much thought and consideration, he decided that he would like to go to nursing school. In the meantime, we had our second son in January 2003. The University of Florida was conducting a study (PANDA) that tested newborns for the markers for diabetes. Jacob and Justin had been a part of the study. Jacob was said to be No/Low Risk. Justin was marked as High Risk from the beginning. We kept this in mind with what we fed him and limited his amount of juice. We knew we couldn't prevent it, but we hoped to prolong it. Soon after Tom graduated nursing school in 2005, our baby was diagnosed with Type I diabetes. I was crushed and so sad for him. I ached and just wished that I could take it away; I would gladly shoulder this burden that he will now have to bear for the rest of his life. He was 2 years, 4 months, and 20 days old. I will never forget that day. He had been diagnosed with croup a couple days before when we took him to the doctor; the P.A. had prescribed Prednisone. I do not blame her because we had only discussed our family history of diabetes and the results of the PANDA study with our regular doctor. I was unaware that steroids raise your blood glucose, so I didn't think twice about giving him the treatment. So we kept him home from daycare that day. I watched him in the morning, but my mother-in-law was going to keep him in the afternoon so that I could go back to work. He fell asleep on the couch just before I left. After awhile, my mother-in-law called and said that when he woke up, he had soaked through his diaper onto the couch. We talked and decided that she should check his blood sugar. He was 487. A non-diabetic should be between 60-100. I immediately called his doctor and they said to take him to the hospital. I tried to hold it together, after all I dealt with this everyday, but this was my baby we were talking about. By the time we got to the ER and they checked him again he was 578. They rushed him to the back and started him on insulin. When his blood sugar levels were back to normal, we left with instructions to monitor him over night and to see a Pediatric Endocrinologist the following day. We spent six hours at the doctor's office, being loaded up with books and free supplies, meeting with nurses, then the doctor, then the dietitian, then someone to train us on giving injections. We were told to keep a log of what he ate, his activity, and his blood sugars (BS). We were scheduled to come back in one week. We noticed throughout the week that his BS were getting lower day-by-day and that he was not needing the amount of insulin that we originally started with. At his next visit, we were told that he seemed to no longer need the insulin. Everyone was hoping that maybe just the illness and the Prednisone had thrown his system for a loop, and that he was in fact not becoming diabetic. We were ecstatic to say the least. It was my birthday, and I couldn't have asked for a better gift. Again, we were told to monitor his BS and keep a log. For three glorious weeks, our child was free from having to suffer from this disease. But one morning, near the end of June, we woke up and checked him and he was in the 200's. Throughout the day, he never got into normal range. We called the endocrinologist office and were told to start back on his insulin routine. And so it has been for over five years now. He handles it like a champ. He has never known any different and was surprised when he heard me tell someone that he was diagnosed at 2 years old. It is never easy as he is still so sensitive to both insulin and sugar. We do our best, but I feel it is not enough. I had one doctor that would give me the biggest guilt trip every time we went in and I would leave in tears. We are finally seeing a doctor at the Barbara Davis Center in Denver that has diabetes herself and is very understanding. I pray everyday for a cure.
Tom has been diabetic since he was a year and a half old. Being a lifetime diabetic he went through his denial stages in his late teens and early twenties. He just this year received an insulin pump and continuous glucose monitor (CGM). What a blessing these have been! His A1C has gone from out of control at 11 to a beautiful 7.4. We are working on getting it even better. We tried a CGM on Justin, but he has very little bodily real estate to put the sensor since we need a bit of fat.
I hope and pray for a cure for this terrible disease everyday. Until then I will just do what I can to get by and help my boys live their lives to the fullest.
(This post turned out much longer than I expected. Thanks for hanging in there.)
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