So to give you a good recap of how we got to this place I figure I should share our diagnosis story. As most of you know, Parker has struggled with gross motor skills, temperature regulation (he is my sweaty boy, even in the dead of winter), and low muscle tone throughout his childhood. These symptoms (and extreme nagging and persistence on our parts to find a cause) led to the diagnosis of a Chiari I malformation and syringomyelia on December 16, 2009. Following a routine MRI we discovered that almost 75% of Parker's spinal cord was compressed by a central tumor filled with CSF (cerebrospinal fluid) due to increased pressure on his cord by a narrowing at the base of his skull. So after a very tense Christmas holiday, full of worry and waiting, we had surgery on January 23, 2010 to decompress the hole at the base of Parker's skull, remove a portion of his C1 vertebrae, and relieve the pressure on Parker's spinal cord. Thanks to the God-given gifts of a wonderful surgeon with skilled hands and fervent prayers of many, Parker recovered beautifully and had a clean MRI this August.
We thought we had been through the worst of his struggles for sure, because what could be worse than brain/spinal cord surgery on a three year old? We would soon discover the answer.
On December 17, 2010 Jared and I flew to Florida for the wedding of his sister Maegan. While we were gone my sister mentioned that Parker had struggled with some bed-wetting. I simply thought his routine had been disrupted or maybe she had forgotten to make him go to the bathroom before bed. He wet the bed again on Monday night so I made sure that he went to the bathroom Tuesday evening but he woke at 10:00, again at 2:30 and still wet the bed around 5:00 in the morning. I laid awake all night thinking in back to grad school and trying to think of all the causes of excessive urination... my mind kept going back to Type I diabetes. First thing in the morning on December 22, 2010 I told my Jared that I thought Parker had Type I diabetes. Normally he would have said I was being crazy or looking at the internet too much but after our spinal cord problems he learned that my gut instincts were pretty accurate with Parker. We made an appointment with our sweet pediatrician for that afternoon and I asked Jared's mom to keep a log of how much he drank and urinated that day. After I shared our symptoms with Dr. Terry, she took a quick urine test and looked panicked and tearful as she asked whether we had family in town that could help with Avery because I would be in the hospital for several days with Parker. She confirmed my fears that Parker was diabetic and sent us straight to the Legacy Children's ER. I have learned that when your pediatrician cries when she shares news, it's because she knows how much your life is about to change. I am so thankful for the kind and compassionate women/mothers that we have had as Parker's pediatricians. They have made it easier to receive bad news.
As I drove Parker to the ER I was taken back to how I felt exactly one year before when we received the news that he would need spinal cord surgery and it felt like a million years ago. Suddenly, we were faced with a life-long challenge that would never be in our rearview mirror.
Jared had to receive the bad news on the phone again, like the year before when I called during our terrible MRI. He quickly met us at the ER along with my dad and uncle who was in town for Christmas. At the Legacy ER they quickly reported how high his blood sugar was (it's a blur but I think it was about 411), that he had large ketones in his urine, indicating that he had been breaking down fat for energy, and was dehydrated. My first thought was, how can he be dehydrated when we have been giving him so much water? His body was using all the water to flush out the excess glucose in his blood stream. If we had limited his water intake to prevent bed-wetting we would have made him very ill, they reported. We had done a great job by giving him lots of water to help him keep from going into diabetic ketoacidosis (a life threatening condition). Before we ever saw the doctor Parker needed lab draws and an IV. I cannot quite describe the trauma that getting labs drawn and having IV's placed has been for sweet Parker. I just know that it was so hard to watch that my uncle and dad had to turn and leave at one point to hide their own tears. It's heartbreaking to hear your son say, "I want to go home!" at the top of his lungs over and over again. He knew he was missing a Christmas party with friends at our house and he couldn't understand why he needed to be in the hospital when he felt fine. After the labs were in we met with another very compassionate doctor who explained that we did indeed have Type I diabetes and would need to be transferred downtown to Children's Medical Center Dallas for "training" a.k.a "survival skills" before we could take Parker home.
Parker got to ride in an ambulance to CMC Dallas and greeted every nurse on the floor upon his arrival. He acted as though he owned the joint since he had been here before and remembered the lay of the land. He was not so pleased when he realized that every time someone came in his room he would need a finger stick and shot. The first night was a little rough because he was exhausted and just didn't want to be messed with but on day two he met Nurse Ashley! This was a love affair that would go on for the next several days. She was the sweetest nurse and so good at explaining every step to Parker so he wouldn't be as afraid. She was also very compassionate with Jared and I as we cried, asked questions, freaked out about having to do this everyday, etc. Then, it was time for the diabetes educator, Aquilla to teach us how to care for Parker. We had two hours of head swimming information and practice on one another. Then we had another education class with the dietician to learn how to count carbs and plan Parker's meals. By the end of these classes we just went to the cafeteria and cried. It was overwhelming, exhausting, mind-numbing, frightening stuff to know that Parker's life was now resting in our hands. He could not live without injections four times a day and finger sticks at least 4-6 times a day. We slept a little then repeated the process the next day with a review of information and tests of our skills. Luckily, Parker was a champ at shots and finger sticks by day two. I can't imagine how hard this would have been with any other kid. Parker is so sweet, he rolls with the punches and learns to adjust so quickly. The doctor told us that it may not be so sweet once we went home and he learned that Diabetes would come home with him and not stay in the hospital. But, Dr. White underestimated our little man. He has never thrown a fit about a shot or finger stick to this day.
It was great to get to leave the nasty, dirty hospital room and go to our nice warm comfortable beds on Christmas Eve. But we had no idea how hard it would be coming home to the bustle of the holidays. Parker's sugars sky rocketed because he got too excited, we panicked and needed to call the on-call doctors twice that weekend but they calmly reinforced what we had already learned. The holidays were not as joyful for Jared and I this year as we were grieving and felt like we were watching the world have fun while our hearts were breaking. The bright spot in all of it was watching the joy on Parker and Avery's faces. They moved on, they didn't care that we brought Diabetes home with us, they were just happy to be kids and carefree.
We didn't take pictures of his hospital stay other than him playing in the child life room. But here's a few from Christmas....you can tell he isn't too heartbroken.
We aren't grieving any more, we have moved past that phase. Now, I get a bit mad at times, but I will explain that in another blog post :) We are blessed beyond measure, grateful to God for his awesome power in revealing Parker's needs to us, and sustaining us daily.