Wednesday, September 26, 2012

Here we are again...

It was a simple Saturday, I noticed my 2 year old son, Darryn, was drinking more than normal. He just couldn't seem to quench his thirst. I remember looking at my husand and saying, "something just isn't right." I texted my mom for advice and explained the unquenchable thirst. She said to simply keep an eye on his thirst and his weight, make sure he isn't losing weight, that these are signs of diabetes. My mom was in the medical field so immediately I weighed Darryn. He had not lost any weight. I felt good. I knew nothing about diabetes but was sure my son was just thirsty. I proceeded through the weekend and took him to daycare that Monday, I asked questions about his thirst and they told me I was overreacting. I went about my week...still worried but kept reassuring myself he was fine. That following weekend we watched everything he ate and drank, making sure his intake of sodium wasn't too high, to explain the excessive thirst. His thirst still couldn't be quenched. He started soaking through diapers every hour. I kept weighing him and realized while he wasn't losing weight, he had grown in height a lot and never gained a pound. I took him back to daycare on Monday and again asked if anything was out of the normal with him. I was told again that I was overreacting. That evening I picked Darryn up and he soaked diaper after diaper, I swear we went through 5 pair of pants that evening. Finally that Tuesday I got to work and called the pediatrician. I explained what I was witnessing and they requested to see Darryn, still thinking this was something simple I made the latest appointment as possible. I got off work and picked up the boys and headed home. I did nothing more than drop of Devyn with his Dad and headed to the doctor's office. What I didn't know is that life would never be the same for us again. We got called back and immediately they tested Darryn's blood with a meter, the reading was so high they called a nurse in and tested her finger to be sure the meter was accurate. I am still dumbfounded at this point. Next thing I know they are testing his urine. Point blank I was told your son is a Type 1 Diabetic, also known as Juvenile Diabetes. My first question, "will he grow out of this?" I was simply told no. The only way he would get rid of this disease was for a cure to be found....I heard nothing after that...not a word.Our pediatrician escorted us to the local hospital, where we were admitted immediately. It is still a blur...I really couldn't wrap my head around it. I had no idea what was happening, but I knew it wasn't good. All I could do was cry. All Darryn could do was wrap his loving arms around me and tell me everything would be ok. How is it that I have no clue what is going on or what life had in store for us, but there sits my amazing 2 year old reassuring me???? That alone broke my heart!!
The days after diagnosis there were a ton of specialists that visited our room, always asking what questions I could I have questions about a disease I knew nothing about??? I felt lost....
After a whirlwind of classes and training to be able to care for our baby, we were finally sent home. I had no clue what I was doing or how I would give my baby shots and poke his tiny fingers repeatedly. I was beyond shattered and heartbrokened. After all, I have always been scared to death of needles. How am I to do this??? I lost my daycare in the middle of our hospital stay, as she didn't want the responsibility or the liability of caring for Darryn. So, we are finally home and I can't go back to work because I have no care for my boys. Life was a mess. Simple. A mess.
I had a great deal of supportive friends that rallied behind us, between coaching me on how to give shots and looking for daycares. After 3 weeks I found a daycare that promised to do their best in caring for Darryn. It was hard to let him go but I trusted my gut and went back to work....I cried alot. Anytime I looked at pictures of Darryn "before" I bawled like a baby...where did my healthy child go??? I researched diabetes and searched desperately for a "cure" I was determined this disease could be cured. I couldn't help but continue to ask, "why?????" "WHY?????" "Why him????"
After a year of injections and pricking his tiny fingers I started to research the insulin pump. It was a struggle to put something on the little body of my son....I struggled if he would accept it or if people would look at him differently. I hated it.
We ended up going with the OmniPod after months of research, the first few weeks I felt like we were diagnosed all over again. It was rough, but we worked through it.
Life became our "normal" again. Life wasn't easy but it was our life. I became adjusted. Darryn became adjusted. Poor Devyn who wasn't type 1 just sat back and took it all in. He made himself content while we dealt with Darryn.
So to catch you up, Darryn has been on the pump now for about 9 months. We went on a family vacation and I did what any mom would do, I overpacked diabetes supplies, I mapquested the local hopsital (for an emergency), I mapquested the local pharmacy, just incase I forgot something. Vacation went well, I realized I overpacked.
Even as we came back to the condo for naps, I laid on the patio to sunbathe and had a revelation...this was doable. I had several women, from waitresses to passerby's on the boardwalk tell me that I totally had my hands full with 3 little ones all under the age of 5. But laying there in the sun, I realized that I didn't want my hands to be anything but full, otherwise I wouldn't have my babies. And I couldn't imagine life withouth them. I even went as far to think to myself that diabetes is hard, but its ok. Yes, I have to pack extra things to leave our condo cause diabetes never takes a vacation...but I realized this was all ok. I was comfortable, life was ok. It would be just fine. We could do this.
But as the week went on, my baby girl (11 months old) took a turn for the worse. She wasn't herself, she wasn't enjoying vacation. She wouldn't do anything other than lay around, she is usually a busy body...very nosy. This worried me to the point of paging her pediatrician. They told me as long as she was responsive just finish out vacation and if she wasn't any better by the weekend when we got home to call. I went with it. Everyone in our house had the stomach bug the week before vacation. I just figured with her young age she wasn't able to fight it like the rest of us.
Vacation finally came to an end and we headed home. She slept the whole way, she slept the whole afternoon into evening once we were home. I kept thinking she would realize we were home and come around. That next day she wouldn't drink or eat anything, her Mimi came to see the kids and she was unresponsive...I started to count the days and realized she was not herself now for 5 days. Something didn't settle well within me...I told my mom I should check her with Darryn's meter to be sure, but then moved on to do something else. Maybe it was the denial in me, but I didn't want to face what was staring at me...I was scared. Fear started to set in. My mom finally demanded I take the time to check her. She was 308, I immediately paged Darryn's Endo. They told me to recheck her in 2-3 hours. Within a half an hour my mom couldn't get her to respond to anything. I decided she was going to be checked in an hour. She was 399. I knew at this point what I didn't want to face. My mom and dad took the boys as I paged the doctor again. He told me to rush her to the local ER. Which we did. God bless I had her numbers and the experience I did, because she was rushed to a bed immediately. Within an hour we were being rushed by Life Lion to Hershey Children's Hospital. Everything was a cluster...all I could do was cry. She was severly dehydrated and they couldn't get labs from her, even calling in the best of the best to do labs on her. They ended up having to take blood from a vein in her forehead. Its a sight I will never forget. It still haunts me. She was diagnosed with severe DKA (diabetic ketoacidosis) which is a life threatening condition. For over 24 hours she was in severe DKA. I struggled with how, with all the experience I have with this disease, how on earth did I not rush her sooner. I was told by several specialists that had I not got her there sooner, we would have lost her. She was very near to a coma. So, today I struggle with how on earth I missed the early signs...Even with experience of this disease, how did I miss this??? It's easy to overlook things. Please know the signs, so many people know nothing about Type 1 Diabetes. I want to change that, I need to change that. Sorry this was so long, but I thought it was best to give you a background on our family. I will do all I can to help others through this journey. I am struggling emotionally now that we have been home a few weeks. It hurts! I look back at me always asking "why" with Darryn, well I have my answer now, if it wasn't for his diagnosis we for sure would have lost his baby sister, Camryn. He is not only my super hero but her guardian angel.