Today was a day!
Last night I went to bed at 2 in the morning because I had to defeat the rebel alliance in Star Wars Battlefront 2. Full disclosure: I am pretty terrible at the game. An hour and a half later I wake up to Justine moving around because she is awake. Since she is non-verbal she doesn’t announce that she is awake, but she still wants to let you know. She rocks from side to side roundhouse-kicking me and my wife until we wake up. Jaz normally wakes up first and I am able to fend off the attacks in my sleep. Jaz wakes me up and tells me Justine’s fever has gone up. This instantly launches me in to doctor mode. Kids with a diagnosis that contains epilepsy are more susceptible to febrile seizures than kids who don’t have the diagnosis. We found out the hard way in 2013 when Justine had a seizure that lasted for almost an hour because her temperature spiked (that’s a story for another time).
We start putting cold washcloths in her chest, back, and head. Her fever at this point was at 102.3°. We believe the last time she had a seizure in 2013 her fever was around 102°. I am naturally terrified that this latest illness will bring on another seizure or even worse a cluster of seizures. I’ve seen kids with the same diagnosis suffer from these same high fever seizures and it is so devastating for the parents. They could go on for months or even years seizure-free and then they are pulled back all the way to the start with these terrible seizures. Another problem we run into with Justine is that because she is non-verbal, we have trouble communicating to her. She needed to have some fever medication to feel better but she doesn’t understand that when we say it to her. So because she isn’t feeling well she does not want to eat or take any medication.
We have run into this situation before so I had to give her a Fever All suppository in order to get the fever down. Remember, this is at 3:45 in the morning. Pretty heavy stuff to do on an hour and half of sleep. We continue swapping cold washcloths on her body because her body heat warms them up so quickly. Of course she is screaming because it is not at all comfortable, but we must get that temperature down because of the possible seizures. It always feels like we are racing against the clock in these situations. Finally her fever dips a little to 101° at around 5am. Jaz and I are exhausted and Justine seems to be comfortable but she isn’t really eating. With fevers comes risk of dehydration so we decide we need to go to urgent care when they open. But first we need a little more rest. We slip in and out of consciousness for the next couple of hours, waking with the ear thermometer in hand to check Justine’s temperature.
At some point Justine falls asleep too with the wet washcloths on her so I remove them and replace them with a sweet Star Wars blanket Jaz got me for my birthday. She wakes up around 8am or so disoriented and her fever is back up to 102°. Adrenaline kicks in again but it is time for her daily seizure and dystonia medications. She luckily takes her seizure meds but has no interest in any more food or formula, including her dystonia medication. It is here when I start getting frustrated. I have these moments when I start feeling overwhelmed with our situation which can either spiral out of control or I am able to control my thoughts and focus on the task at hand. In this case, it is getting her fever down again. I give an audible grunt and Jaz knows it is time we switch off and she give it a try. She is unable to get her to eat any more so we book an appointment at the closest urgent care facility on a few minutes away. We drive over there to find out their computer system is down and they never received our appointment request (I made it online) and the visit would take 2-3 hours to complete. I said “no thanks” and drove her to the doctor’s office Jaz and I normally go to instead.
Since the doctor had never seen Justine before we had to go thru the whole medical history that I have committed to memory. Phrases like “seizure activity at 10th hour of life”, and “KCNQ2 encephalopathy” are things I never expected to say as a parent but need to remember anytime we meet a new medical professional. The doctor found no infections and said it was just viral, probably something she caught at school. With the continued risk of seizures and dehydration, the doctor instructed us that if she isn’t eating by mid-afternoon, to go to the ER so she can have IV fluids. I knew that an ER visit might be in our future when she stopped eating. Now it was becoming more real.
We drove home and tried to get her to relax, sitting in her sitter, watching YouTube videos of her favorite group Fifth Harmony, and continuing to keep her cool with cold compresses. Finally at around 3pm she ate a couple of bottles, including her dystonia medication she was supposed to take in the morning. Finally! A little progress. That med normally gets her a little sleepy so we were able to all nap, again slipping in and out of consciousness, obsessively checking her temperature.
She wakes up again crying because she has spiked once again over 102° which once again launches us in to try to get it down. More cold washcloths and this time two suppositories as directed by the doctor slowly get her temperature down to around 101°. We decide to hang out in the basement where it is a little cooler and Justine gets to play with all of her toys along with some new ones my friend Carrie dropped off earlier in the day:
She takes her nighttime medications with no fight (thank God!) and another session of cold wash cloths and extra snuggles and her temperature is down around 99°. With fevers, children’s temperature normally spikes while they are sleeping (which was proven today) so I am fully expecting to wake up in panic tomorrow morning to start all over again. But this time I won’t be up playing video games all hours of the night. Instead I wrote this blog.
These types of crazy days are few and far between but when they do happen I’ve learned to stay cool and give both Justine and Jaz what they need to get through the day. I think of these days all of the time because of the increased risks of seizures and how I need to react to the roller coaster ride of the day. As parents, there are days we just simply need to survive to make it to the next day. As exhausting as it can be, we do it for our children, so they have the best opportunity for success. Just as important, it gives my wife and I the opportunity to work together and listen to each other’s ideas to get the job done. I like to think I have gotten better during these stressful days, but it is because I work with Jaz to get it done.