The Journey Begins

Snapchat-762079744After diagnosis, of course the first question we were all asked was- what exactly happened?! That day wasn’t anything out of the ordinary. I had daycare children in my home throughout the day and then after pick-up time, I worked on getting my kids ready for trick-or-treat. Carter was barely six months old and just starting out on solid foods. He happily sat in his high chair, on and off eating pureed bananas and watching his siblings play. Shortly after, we went out for trick-or-treat with my sister-in-law, their families and my mother-in-law. Carter was a little clingy, as per usual, but was content enough in my Lillebaby carrier to hang out and eventually, fall asleep while cozy and snug on my chest. We got home around bedtime and worked on putting all three kids to bed. Carter had always been known to go down to bed, fall asleep and then wake up again 30-45 minutes later. So when this happened shortly after putting him to bed Halloween night, we thought nothing of it. However, when I got downstairs to his crib to resettle him, I heard him vomiting. I couldn’t believe my luck- barely November and my youngest was sick. The vomiting scared me because it was so clearly vomit and not spit-up or reflux. I cleaned him and his crib and resettled him to bed. I had a nervous feeling so I shut off the lights and stayed downstairs, reading a book in our bed and keeping an ear out from nearby. About a half hour later, I heard him start gagging and flew to his cribside. I picked him up while he struggled to vomit again. I worrily told my husband that I didn’t like this situation and had decided Carter would sleep with me so I could keep an extra close eye on him. Carter would not settle- he lay on my chest tossing and turning, clearly exhausted but so, so restless. It was very worrisome. He and I dozed on and off for several hours without any more vomiting, thankfully. Around midnight, Carter began a low cry. It was unlike anything I’d ever heard. He wasn’t actually crying with tears- it was more like a low moan. I still assumed it was just some sort of stomach virus or even possibly the flu, though it was only the end of October. 3am came and we’d still had no sleep. My last ditch effort to get Carter to sleep was to try to go out driving. It was 17* out and absolutely bone chilling as I strapped Carter in and bundled him up. He had stopped the noise but just kept looking at me with eyes that suggested he was in pain. I remember feeling so helpless as I continued to count down the hours until his pediatrician’s office opened.

Finally, 8am came. I called the pediatrician’s office and kept getting the answering service, though they were supposed to begin taking calls at 8. Finally, at 8:20am, I yelled at the woman on the answering service that I needed an appointment for my son and didn’t care where it was at. She got someone on the phone at another office who made an appointment for me, as apparently my office’s phones were down. I dropped my oldest son, Corey, to school and my daughter, Hayley, Carter and I headed to the pediatrian’s office. A quick exam showed he had lost a pound in 3 weeks time and looked severely dehydrated. Though I had attempted multiple times throughout the night and early morning, Carter refused to nurse. He did take some pedialyte at the doctor’s office but it was suggested that I go to Elliot Hospital in Manchester, NH where they had a pediatric emergency department that could best evaluate Carter further.

After dropping Hayley to my brother-in-law and calling my husband, I headed up to Manchester. It took two and a half hours to get an IV line into Carter due to severe dehydration and I was really beginning to worry about him. An excruciating 6 hours later, the doctor stepped into the room. He said Carter was diabetic and needed to be transferred to Boston Children’s Hospital, as their hospital was not able to care for him as well as BCH could. He left and my husband looked at me in shock, saying immediately, “that doesn’t sound right”. I was speechless, trying to process everything. Nobody in my family is diabetic, nor Jon’s family. From my knowledge, diabetes was an adult disease, certainly not an infant one! Not thinking anything was super urgent, he left to go back to Nashua to pack us a bag and make arrangements for having Corey picked up from school. While Jon was gone, a nurse that had been helping us came back in the room, clearly having been crying outside the room. It was then that something inside me said there was more to all of this then they were letting on. When she stole a glance in my direction, I made eye contact with her. I wanted to know what was going on, how serious it was, and what Carter needed from BCH that Elliot could not provide us.

She got the head nurse who came in and sat down next to me. She explained Carter was diabetic with a blood sugar higher than they had ever seen in an infant- 787. A normal range, she explained, was between 100-200. He was currently in critical condition and severely dehydrated. He needed fluids and insulin to bring his blood sugar down, but they had to go very slow in the process of doing this. I explained all this to my husband when he got back. I’ll never forget the look of shock, hopelessness and grief on his face. We were both devastated, and confused. The real moment that will forever shake me (as well as my dad and Jon, who were both in the room at the time), is when the Boston Children’s ambulance crew burst in the door. I don’t say ‘burst’ to be dramatic- the door literally swung open and a whole crew of people came rushing inside. There was a stretcher, lots of bags, and a lot of chaos. All I could do was sit with Carter in the hospital bed and silently cry as I watched the scene unfold. My 6 month old baby was in critical condition. His life was on the line and I couldn’t do anything to help him. The next 48 hours brought a slew of changes and new information that would overload my brain and take weeks to slowly seep in. We have nothing but good things to say about Boston Children’s Hospital and the care they gave our son and our family during this excruciatingly overwhelming and painful time. From the moment we arrived in Boston, we were taken care of. Doctors, nurses, diabetes educators and social workers flooded our room throughout the days, explaining what was going on, what would be done next and how we could best help Carter. Within a few days, however, Carter started being Carter again. Instead of laying in his bed, still, watching Mickey Mouse clubhouse, he started showing interest in nearby toys and the mobile overhead. Slowly, but surely, Carter came back to us…

 

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