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alysoncheatham

17 Month old Carter's Story Of Type 1 Diabetes

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alysoncheatham

It had been a rough couple of days, vomiting, fever, extreme thirst, immense urination. Though diabetes was never a factor in mine or my husband’s family history, as my 17- month-old son Carter struggled with these symptoms, I worried that diabetes might be rearing its ugly head. I immediately took him to Urgent Care. Upon being seen I made mention to the doctor that I was concerned about diabetes and her question to me was: “Does diabetes run in you or your husband’s family?” When I replied no, she looked at his throat, assured me that it was a virus and to keep him hydrated with Pedialite, Gatorade, Jell-O, and have him on the B.R.A.T diet and in a couple of days he would be fine.

 

The following Wednesday, as the vomiting continued, I left for work with a heavy heart filled with worry. When I arrived home, my husband gave me the run down of the day and let me know that Carter had stopped vomiting. When I walked into our living room and saw our son laying on the couch, propped up by pillows, unable to lift his own head I broke down into tears and said, “We’re going to the Emergency Room.” Once in Triage in the ER, I sat with my baby, so lethargic and gaunt but still fighting. When the nurse attempted to get a blood sugar reading and couldn’t she turned to me and said the phrase I never wanted, nor was prepared to hear, “I think your son is diabetic.” Immediately, I started sobbing. I have never felt so helpless in my life. We were whisked away to a room and he was placed on drip fluids. I gripped my son in my arms and as I lay him down on the table to be poked continuously, I felt my heart rip out of my chest and be laid on the table with him. As my husband and I watched our son be worked on by a multitude of doctors and nurses, one nurse finally came up to me and notified me that Carter was to be air lifted to a Children’s Hospital in San Diego (70 miles away). I asked if one of us could ride with him and was told due to health regulations we could not. Fear gripped me as I struggled with the feelings of abandonment my son would feel without me by his side for the flight. How scared he would be, and alone he would feel with strangers. I had to acquiesce; I had no choice. I was told by the staff in the ER that Carter was in severe DKA (Diabetic Ketoacidosis) and it was expedient that he get to the Children’s Hospital right away in order to save his life as he was in critical condition. My husband and I kissed our baby goodbye and headed home to drop our four-year-old off with family, and pack bags for a week that would forever change our lives.

 

 

 

My husband and I arrived at Rady’s Hospital two hours later and Carter was stable, but struggling. The doctors came and spoke with us, and since he was in such severe DKA he was going to be moved into the Intensive Care Unit. We spent two days up in ICU where we learned in-depth what DKA meant and watched our son’s body struggle to balance itself out while on a continuous insulin drip. Finally, after two days, he was taken off the monitors and allowed to eat. Just prior to eating he received his first subcutaneous injection. He didn’t like it at first, but once it was over, he was fine. He ate and we were moved to the pediatrics floor where we stayed for the next three days and learned all there is to know about Type 1 Diabetes and A1C levels. As we learned the severity of DKA, and the detriment of measuring carbs and of being insulin cognizant, I couldn’t help but still feel the enormity of change and lack of control I was to face once we left the hospital and headed home. Burdened with a human resistance to change, and an overwhelming sense of duty and responsibility we walked out of the hospital a new family. As I clutched the bags of my son’s belongings, I looked at him in awe of his courage, strength and survivor’s spirit. He had been through **** and back, his life changed in an instant bringing with it shots, finger pricks and more blood draws then a healthy adult has ever seen, yet when the fresh air hit his face he became alive. He was so grateful for all of the small things and no doubt excited to get home to get back to his normal life.

 

I watched his devastation as I administered his first shot in our kitchen at home. I did my best to make it a positive experience, but knew being such a novice I was so transparent. As the days went by, my comfort level grew, and the fear that crippled me in the hospital was almost gone. I remembered that as his mother I would do anything for him: I would gladly take the place of his pancreas for as long as I needed to ensure that his life would be a long and full one. I decided early that diabetes was going to fit into our life, not the other way around. We involved our four-year-old daughter from the onset of this diagnosis. I brought her to the hospital once Carter had been moved to the pediatric floor so that she had a firsthand glimpse of what life would be like once we all came home. Though life has changed, I am more carb conscious; I administer shots; check blood glucose levels continually; worry when he is sleeping and constantly check on him through the night. He is still my little boy, just with more buttons.

 

The one piece of advice I can give to a newly diagnosed family is to grieve. Though this is a manageable disease, there are days that are riddled with difficulties and trials. I have learned more in two months about diabetes and life after a diagnosis then I learned in all my years of schooling. Maybe it’s because there is more at stake now, and misjudging is more costly these days. All I know is that through all the disappointment, the pain, the anger and fear, there is life after a diabetes diagnosis. Though blood sugar highs and lows are frequent and a part of our future, I have learned so much through my son, post diagnosis. My son is probably the bravest person I know. His strength is unwavering and his patience with me as I struggle to accept it all is astonishing. I have found peace in allowing myself the bad days when I will cry over nothing, or look through pictures pre-diagnosis and obsess over the things I should have seen in order to have spared him a hospital visit. The grieving process is different for everyone and we don’t need to be strong every minute of every day; living with a child who has diabetes is frustrating and heartbreaking, but also extremely rewarding. Through this experience, my family has grown closer and stronger, and my son has a newfound confidence in my ability to care for him. Diabetes has shown me how to take every day as it comes, love stronger, always be present, and, most importantly, learn how to listen to your body (or in this case, my son’s body.) Getting a Type 1 Diabetes diagnosis is terrifying, but it’s not a death sentence. It is a second chance at life that evokes an overall sense of understanding oneself and having a healthy relationship with food encompassed with frustration, aggravation, anger, sadness and awe at one’s capacity to fight and ultimately survive.

 

 

You can read more posts that I write everyday about Carter's journey (on my blog)

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Tanikit

Thanks for sharing your story. I have read it with an eye on a couple of things - firstly what my own parents must have gone through when I was diagnosed type 1 many years ago now and secondly how I might feel if my own children were to have to go through the same thing.

 

You too will be learning through your whole life and so will Carter and his sister. It is an ever changing disease and just when you think you know it, something will happen - your child will grow and develop or circumstances or drugs will change and you'll be learning all over again. What was most evident though is how much you love both children - that you got your elder child involved young is great.

 

I have been a type 1 now for 23 years this May and there are many on these boards who have been type 1s for much longer and have many stories to tell. While you and your son are just starting out and have been through so much there will also be a lot of living in there as things settle down and you all draw together to cope. Thanks again for sharing and good luck with all the adjustments you will be learning to make. Remember in the meantime to smile at each small step - first sentences, potty training, starting school as well as the diabetic firsts too - when he starts to understand how things are controlled and also be able to tell other kids what is going on to the time when he becomes fully independent and knows more about this than both you and his doctor. You are doing great.

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Lady Imp

Thank you for sharing this. Like Tanikit, I read it like I was reading my parents' thoughts and feelings when I was first diagnosed. As a kid I was kind of like "meh, whatever," as a teenager it was "this sucks, I hate it and I hate you," and now that I'm an adult and a parent myself I pray that I don't find myself going through it from the parent's side. I don't know how my parents got through it (especially my mother during my teenage years, as her and I butted heads on the subject on a daily basis), but they did, and I know you will too.

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rubidoux

Alright, I will have to read the last 2/3rds of your story later bc I don't want to bawl here in Starbucks. I want to say though that I'm so sorry for what you went through and for what's happiening w your little guy. And I want to kick that UC doc, hard.

 

I was dx'd when I was 23, so my story is very different (although, I did have to beg for a fingers tick, sigh), and I always think (I suppose bc I have little ones myself) that being the parent w a small child w t1 has got to be so, so hard. I hope that it is a comfort to you, though, that you are shouldering a huge amount of his burden. It's not as hard for him and it probably never will be.

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Hooterville

That's a wonderful...I don't know if tribute is the right word but it feels that way to me. You really honor your son in telling his story here. I think how many parents will read your story and find strength in it as they go through their own journey with their kids. Thanks for sharing. :)

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