Watching that ambulance drive off with my husband and daughter may have been one of the hardest things I have ever experienced. How is it that time can go racing by, but at the same time a moment can feel never ending? I was probably only standing there for about ten seconds, but it felt like it took days for the ambulance to turn the corner.
After I snapped out of my “oh. my. gosh.” daze, I immediately got back on the phone. I called a close friend who was willing to come pick up Thaya for the day. As I started getting cereal in Lily, I managed to call my in-laws (who, thanks to quick thinking and a call from my mom, were already packing and on their way out the door) who agreed to pick up Thaya when they arrived, and then a message to another dear friend who had taken care of the other girls the day before. I asked her to call me back for more specific details about what had gone on the day before to try to figure out if Aubrie had somehow managed to get into something in the house or in the yard that could have caused some issues. I knew then, in my heart of hearts, that there is no way that she could have gotten in to anything (as tests later confirmed), but it was important to be able to definitively cross it off the list.
I felt relief wash over me as I realized that I was too exhausted the night before to unpack the bag of snacks and toys that we had brought to the hospital the day before when we were visiting my dad in the ICU. You see, Lily was a little late on the food bandwagon, so she still nurses 4 – 5 times a day. This means that ever time I had to go to the hospital, I had about 4 hours to spend before I needed to go home and relieve whomever was watching her, or they had to bring her to me. I never got into a good routine with pumping b/c of my over-production issues, so I didn’t really have any milk on reserve for her. Anyway, the bag was ready to go, and I managed to finish feeding her breakfast around the same time that my friend came to pick up Thaya, and my mom came to escort me to the hospital.
It is probably not so good that I can’t really recall driving to the hospital. I do remember thinking that I’d better be extra cautious so that I don’t waste even more time getting a ticket or in an accident. I also remember thinking, as the time crept by, that maybe I should have had them take her to a closer hospital.
When I was walking down the hall to the pediatric ER, any worries that I had about bringing her to the wrong hospital lost their grip on me with every step. I absolutely knew that I had made the right choice. Robert Wood Johnson University Hospital in New Brunswick is like a fortress, so I never doubted the safety of my family there (not that there was any cause for concern, but you hear those stories about people making off with kids and what-not). The staff were also incredibly friendly, and I don’t know if it was because they could tell I was under a considerable amount of stress or what, but they basically fell over themselves trying to help me.
When I finally made it to her, she was sitting up in bed, eyes open. Her speech was still slurred, but she was trying to talk. I was so thankful that she was functioning again, but she was still… off. She wasn’t making eye contact, she was having a hard time putting words together, and she was going into these trance-like states of just looking straight off into space, eyes open. While she would be in these trances, her eyes would be starring off, but every now and then they would twitch or flick.
Once I arrived, the ER doctor who had taken care of her came back to fill me in on what had happened to that point. Basically when she got there they immediately hooked her up to an IV while taking her blood sugar. That came back in the low 30s, so as they were drawing blood, they gave her a massive syringe filled with sucrose or glucose or something syrupy sweet to get it back up. Her heart rate when she came in was in the 90s, which is low for a child. Her blood pressure was also very low. He told us, without any fluff to cushion the fact, that when she came in, her blood sugar was in the “coma/seizure/fatal” range, and had we waited any longer to wake her, had we “let her sleep in,” we would have lost her.
There really is no way to express how I felt when he said that. If she hadn’t managed to somehow drag her body into our room at 6am, we would have let her sleep. That night was the first time that Lily had slept through the night since she was about 2 months old, so it was the first time I didn’t check on the girls. It was an absolute miracle that she came to us. I fully believe now that our little girl has a guardian angel. Something clicked with her in her (what we now know was a) hallucinogenic state that she needed to get to us for help. Really, it was a miracle.
Without any doubt, we decided to admit her, at the very least, overnight. We felt (and still feel) if something like this happened once, it could happen again. We wanted to make sure that she was very closely monitored so close to her first episode, hoping that the blood sugar tests that she was getting every two hours could help us better understand what was going on.
So by late morning Aubrie was admitted and brought up to her room in the Children’s Specialized Hospital wing. It was awesome. This was an incredibly stressful and confusing time for us, but one thing we didn’t have to worry about was the staff, the room, or how to occupy her while in the hospital. They were incredibly caring, easy to communicate with, and eager to help.
After we settled in, it gave us the opportunity to continue to talk, non-stop, about why this happened to her. The day before she showed very mild signs that she was fighting something off. In other words, she had a runny nose. After talking to her caregiver from the previous day, we determined that it was absolutely impossible that she had gotten into anything. We did realize that she had spent the entire afternoon outside running around. She had a pretty good lunch at that time.
The more we talked, the easier it was to piece together what had happened the day before. As a mother, I have always been vigilant about my children eating 5 meals a day. I allow my children to graze throughout the day and provide them access to a well rounded diet through small meals. This gives them a constant source of energy, and it helps them from having dips in mood and energy levels. We determined that Aubrie had definitely missed her afternoon snack, potentially missed her morning snack. All of this paired with her fighting off a virus and having an active afternoon without a nap, led to a hypoglycemic attack.
What isn’t adding up is the severity of the attack. The doctor had said to us that her blood sugar levels were reflective of someone who hadn’t eaten anything in 18-24 hours. After all was said and done, we really believe that there are underlying issues present that caused the attack to be so severe. Later tests showed that her liver function was severely lowered as a consequence. We already know that her brain function had been impaired from the attack as a coping mechanism from the stress, which is why she was staring off into space and not responding to us, even after her blood sugar had been maintained.
By the afternoon of the following day, they sent us home. Her blood sugar levels were being self-regulated once again. They could only speculate why she had an attack, they could not give us any information on how to avoid another one, and could only make suggestions as to what to do if/when she has another one.
So, basically we’re on our own, watching her like a hawk.
In retrospect, we think that she has always had these issues. A lot of things about her body and behavior make sense now that we have gone through this. She is always exhausted and depressed after school, doesn’t want to talk, and seems to stare off on the way home. These past two weeks her teachers have been giving her juice in school and I have been giving her food in the car. She seems to have been doing better. After dance class, she is noticeably lethargic, whiney, etc. Again, food and drink in the car seems to help, but I have also had to give her food during the class.
Nothing compares to the mornings though. Every morning I wake up afraid. Some mornings, even after her breakfast, she climbs back on to the couch and it is very difficult to get her up and moving. The other day I discovered that sticking some honey in her mouth got her moving enough to give her a cereal bar.
To make an all ready long story a little bit shorter, basically I am shoving food in her nonstop, and wondering why the heck they didn’t send us home with a blood sugar monitor.
While we were at the hospital, they did a series of endocrinology blood draws. We were unable to get the results back at the hospital, so we found out a week later that her insulin levels were severely low when she was there. In one sense, it is good that we have this number from her tests, as now it supports our decision to bring her to a pediatric endocrinologist. All we need to do now is wait for her appointment, and hope that this doctor can give us some insight as to what is going on with our sweet Brie.
In the meantime, she is getting juice twice a day, she is eating a minimum of 6 meals a day, and she is now allowed to eat Gorilla Munchies in her room while we read stories before bedtime. She is constantly in our thoughts and prayers.
But the most important thing is that she is home with us, where she belongs. Somehow she managed to make her way to us that morning, and every day I can’t help but think how different our lives could have been if she had stayed in bed.