Unfortunately Braxton has had a bad spin downwards with his health. He started acting out of the normal mid-October. That Wednesday he cried non-stop all night and day, definitely not typical behavior. I took him into emergency, which I’m sure made everyone think I was an over-reacting crazy mama, but I just felt something wasn’t right. The doctors did bloodwork and urine tests, and nothing came back abnormal, so I took Braxton home. After a couple hours of sleep in his bed, Braxton woke up with a barking cough, and we cuddled him through the night. He had a low grade fever on Thursday and some vomiting, but nothing too alarming. Friday, Braxton continued having a bad cough and resumed his crying, I tried to get him into a doctor’s office, but the pediatrician and family doctor were busy. Saturday Braxton started having seizures more and more often, increasing in frequency and duration. I was really hesitant to give Braxton his rescue medication or take him back to emergency, I didn’t want it to be real that he was seizing so much, knowing we have to go to the hospital, in the night, on a long weekend, when no one there would know Braxton. We administered Braxton’s rescue medication Midazolam, and they stopped the seizures, but only for an hour, then they started again. There isn’t much that can sum up that fear, when the rescue med didn’t rescue your son. So we got packed up, knowing this wouldn’t be a short trip back to emergency.
At the hospital Braxton was rushed immediately into trauma. We have been there before, so Brock and I were able to fall into place amongst the nurses and doctors, helping to give history, and let them know where to not bother trying to put in a line and what meds don’t work. Braxton was given another dose of midazolam, and a loading dose of fosphenytoin and phenobarbital. Finally the seizures slowed as Braxton drifted into a drugged up state. A few hours of observation later, Braxton needed a second dose of phenobarbital, as he started subtle seizing again. The doctors came to the conclusion Braxton had caught a cold virus, which was making him seize uncontrollably. We were admitted overnight, but thankfully as the medications wore off the seizures went back to baseline frequency and we were able to go home. The following day, Tuesday, the seizures started again, and I called the hospital. We were told if we went back to the hospital Braxton would need to be put under heavy sedation in the PICU, and were advised to stay home, monitoring and administering rescue meds ourselves, as long as possible. I broke down at this point, after a week of next to no sleep, extreme worry, a hospital stay, and the emotional roller coaster. But as the doctors at the hospital knew, Brock and I are well trained through experience and took good care of Braxton and got him though the day of seizures without needing a trip back to the hospital. The rest of the week the seizures came and went until his cold virus was finally fought off.
Since this episode we have kept Braxton in a bubble. We haven’t been to play groups, we sanitize everything, and we have a sign on the door to keep sick people away. But even with all of these precautions Braxton caught another bug at the beginning of November. Although this one resulted in him throwing up for two days and a week of phlegmy coughs and sneezes, his seizures didn’t get beyond what we could manage ourselves.
I would love to have a day where Braxton didn’t have a seizure. I cannot see that happening anytime in the near future. Until then I live in the moment. Sometimes those moments are scary and overwhelming. Other times I get the joy of Braxton exploring my face with his hands, singing to the radio, mimicking my words back to me, enjoying eating pear puree with his mouth, or playing with his toys independently. Whatever the day brings, I’m here with Braxton to see him through.