Thursday, February 11, 2010

Ross Keeps Us On Our Toes

I do believe Ross has his holidays mixed up. Halloween is the holiday that you are suppose to scare everyone, not Valentine's Day.

I was murmuring about a snow day on Thursday when I got the text Wednesday night that school would be cancelled the following day. By early Thursday morning, I was grateful he was home with me, not in his homeroom.

The kids all slept on the floor together in Mallory's room Wednesday night. Sometime during the night, Drew had a bad dream and came to sleep on my floor. Grateful for the chance to sleep in, I dozed in and out of sleep in my comfy bed Thursday morning while I listened to Mallory, Elizabeth, and Ross playing in her room. Elizabeth came in screaming something about Ross shaking and she couldn't wake him up. I don't exactly remember what she said, but I know I was running down the hall before she could finish telling me. I found Ross on the floor, face-down, partially under the bed convulsing. I rolled him over to find his eyes closed, his body rigid, and his lips blue while he twitched and labored to breathe. He was making very scary, almost gurgling noises. I began shouting his name and rubbing his chest with my knuckles, trying to stimulate him. Within a few seconds color returned to his lips as his tongue moved enough to allow the air to reach his throat. He stopped convulsing just a second later. I presumed it was his diabetes, so I pulled out his glucose monitor to test his blood. I'm beating myself up now because I should have given him an injection of his emergency glucogon. It is a special syringe and vial that he carries with him at all times to be used if he is ever unconscious. Anyway, as I tested his blood, it was 140 which is completely normal. That is why I didn't use the glucogon - because his blood sugar was normal. Anyway, I held a glucose tablet (rapid sugar tablet) to his lips to see if he could lick it, but he could not. I then had Elizabeth go get some juice. I squirted a few drops into his mouth and he began to swallow a little. He slowly began to take in a little more. Within five minutes he was awake and reactive and taking in juice on his own. I tested his blood, and he was already at 245. I was grateful it was rising. He was very upset to learn what had just happened. He had no recollection of even waking up that morning, even though he had already been awake for at least a half an hour. According to Elizabeth, they played for about a half-hour. Ross was sitting up on the bed, watching the girls play on the floor beneath him. She said he sat straight up and just dropped to the side and began convulsing and making "funny"noises. He then fell to the floor, and she thought he was joking. She kept calling his name and tried to tickle him. When he didn't respond, she came to get me.

After I felt Ross was stable, I called his endocrine team at Cardinal Glennon Children's Hospital to tell them about the episode. They suspected his 24 hour insulin (He takes a dose of Lantus at bedtime.) needed to be reduced from 20 units to 18. The nurse thought that possibly he had a seizure because he was hypoglycemic, or low, and when I began to stimulate him, his blood sugar rapidly rose. That didn't sound so feasible to me because everything happened within about three minutes. But... who am I to question an endocrine nurse?

He very shortly began complaining of a severe headache. He was just writhing in pain, trying to get comfortable. I gave him a dose of ibuprofen, but it didn't touch the headache. An hour-and-a-half later I gave him a dose of Tylenol. He begged me to call the hospital back. I said maybe we should give the Tylenol a half-hour to work. If it didn't then I would call. Well, it didn't, so I called the nurse back. I told her I was very concerned about the headache. She told me she wanted to check with his endocrinologist and stepped away from the phone for a few minutes. She got back on and said Dr. Dempsher thought perhaps this was not diabetes related and wanted me to take him to our ER since we are an hour away from the children's hospital. I called my mom/neighbor to come up with the other children, and we were at the ER in five minutes. He already began feeling a little better at that point. When we got to the ER, they took blood tests, performed an EKG, and a CT scan. The first two were fine, but the doctor said he saw some swelling on his brain. I was a little concerned at that point, but not too much because he had no fever and his white blood counts were normal. He wanted us to be taken by ambulance to Cardinal Glennon. I was glad to go. By the time we got there, Ross was pretty much feeling just fine.

Lots of waiting and lots more questions in the Cardinal Glennon ER. I felt a lot of relief when the neurologist said she saw no sign of swelling on the CT scan. She said when people aren't use to reading pediatric scans, they can mistake a child's brain as being swollen when actually it's just kind of "crowded" into the skull. Our beloved diabetes nurse heard the crazy news and came to find us. He did not think any of it sounded diabetes related. A few minutes later a diabetes nurse practitioner came in to get the history. She did think it was diabetes related. Shortly after that we were told we were being admitted for more testing.

We got comfortable in our room and tried to settle in for the night. Ross continued to feel fantastic and has continued to. We woke up this morning to waiting, testing, waiting, testing, and more waiting. He had a MRI and an EEG. All were clear as expected.

Basically, the diagnosis is this was just a random thing. The neurologist told us that as kids are growing and developing, and their brains are continuing to grow, sometimes an electrical misfire occurs and can cause this. He said chances are 70% to 80% that he will never have another episode again. If he would have another seizure, technically it will be considered epilepsy, and he will have to go on medication. Right now, there really isn't anything to treat.

Edward and I are a little divided on this. I believe this was not diabetes related because I tested his blood within three minutes of the seizure, and he was in normal range. On a side note, had I given the glucogon, it wouldn't have helped, but I'm still kicking myself over it. It wouldn't have hurt anything if I'd given it to him. Anyway, Edward feels it was diabetes related. He believes his blood sugar was low but as he began seizing, his liver produced a natural glucogon (which we all have) which rapidly raised his blood sugar. We'll never really know, I suppose.

We feel grateful for the love and concern we've received. I continue to have the word GRATEFUL in my mind today. I'm grateful Ross is well. Grateful for modern medicine. Grateful for my family. Grateful for the peace I feel. Grateful.

Ross getting an EEG - smiling through it all!