Oliver is my 11-month-old son, and he has TS along with brain tumors and seizures. We have been doing pretty well getting his seizures under control, and things have been going well. Life with tuberous sclerosis is never easy, but these last 20 or so hours have been extra crazy.
2/6/11 11:30 pm
Oliver is starting to act strange. As a parent of a child with TS, you look at everything your kid does very, very carefully, so my husband Jadey and I are used to asking and answering the questions, “Did you see that?” “Was that strange?”, “Have you seen it before?”, etc. So when Jadey wakes me up around 11:30 asking me to come check on Ollie because he is doing weird things, it isn’t anything out of the ordinary. We watch him and talk for a while, then I go back to bed.
2/7/11 12:30 am
Jadey comes and gets me again since Ollie is doing some strange laughing. Ollie is exhausted, and so he would be asleep in Jadey’s arms. Then, Jadey would put him down in his crib, and before long Oliver would wake up screaming. Not crying or fussing- screaming. So Jadey would go over to him and try to calm him, and then Oliver would suddenly become very happy and want to play. He would be laughing, wiggling, squealing, and pretty much being adorable, if you could get over the fact that it was the middle of the night. That would last for about 1-2 minutes, then Oliver would start to get fussy. Jadey would pick him up and calm him for 5 or 10 minutes, then Oliver would fall asleep. And the cycle would start again. This whole cycle happened about 6 times in a period of an hour and a half. Jadey woke me up sometime in the middle of cycle 3 or 4, and I got to see it for myself. If you have ever had to have discussions with your spouse at 1:00 am about whether or not to bring your kid in to the ER, you know they are no fun. I have to figure out if I should plan on getting up at 6:30 and working 10 hours the next day (I have an evaluation and group, and people wait months and months for those evaluation appointments… Should I try to do a half day?). After about 30 minutes of calls to and from receptionists, nurses, and various doctors (including Oliver’s actual PCP; can you believe she called me at 1:00 am on Monday morning???? Oliver has an amazing PCP.), they decide that it may be seizure activity and we should bring him in to the ER. Of course, at that time, he is sleeping and seems to have broken the seizure cycle, so we decide to leave him in his crib and let him sleep. Off to bed.
2/7/11 2:15 am
Oliver wakes up crying. I go in to get him, and I am able to calm him, so I put him back down and go back to bed. 10 minutes, later, he is crying again. I go in again and try to rock him, but he isn’t having it. He is doing strange twitching which are almost like tremors; hard to see, but I can feel it when I hold him. Jadey comes in too, and we decide something had to be done. The tremor thing is lasting for a long time, and I am scared. I wonder if we should call an ambulance- Is he was going to stop breathing? We decide to take him in ourselves.
2/7/11 3:00 am
We make it to the hospital in record time (at least there’s no traffic at 3:00 am!). Turns out, he has a fever of 102.7, which I feel like an idiot for missing. I tell the problems he is having to about 5 different doctors and nurses, all separately of course, and all while trying to remember and think of everything through my haze of dizziness and exhaustion. Over the next 2 hours, they give him ibuprofen, Tylenol, and Ativan. The Ativan is supposed to make him sleepy, but it just makes him hyperactive and really dazed and drugged. Of course, this is happening just around the time we have to give him his normal seizure medicines, and he isn’t with-it enough to be able to swallow anything. It’s scary because you don’t miss doses of seizure medicines if you want to live to see tomorrow. Missing doses leads to prolonged seizures that could kill you- “status epilepticus”. Finally, we get the meds down him with some help from a great nurse. They put us in an observation room for a few hours to see how he will do. Oliver hangs out in the crib, and Jadey and I rest on the twin bed. They finally send us home at 10:30 am.
It’s so strange, because people see us and our adorable baby, and they think that our lives are ok and that things are going to work out fine. Sure, Oliver has seizures (so they’ve heard), but he looks so normal; nothing really bad could be wrong. People don’t see the 3:00 am ER runs or the constant concern and watch for any strange-looking movement that may be a seizure. They don’t have to attend the constant medical appointments. They don’t know what it’s like to be awake with the baby for 1 to 2 hours every night, then have to function the next day at work, day after day after day. They don’t understand about his swallowing problems or see him choke on liquids. They don’t cuddle and bounce him for hours on end when he cries because his tummy hurts so much from him being backed up and full of gas. They don’t have to live with the constant concern about his growing brain tumor that could be causing hydrocephalus. Oliver has an MRI in 2 days, and we are going to see how rapidly that tumor is growing. I am scared because he may end up having emergency brain surgery if things are getting really bad. How many people know what it’s like to have to worry about their baby needing emergency brain surgery?? Then there are the developmental delays. He has some strange ones that make me worry about future mental health problems or autism. Everything is so subtle that it is hard to know what Ollie’s future might hold, and it’s hard to make people understand how serious his situation is. It’s hard to deal with the comments from well-meaning people- “Everything will work out ok.” “Don’t be such a pessimist. Ollie will be fine.” “He looks pretty normal to me.” No wonder denial is such a big part of the grief cycle.
2/7/11 2:00 pm
I just got up from my nap. Oliver has been acting really strange the whole time I was sleeping- hyper, playful, and unable or unwilling to eat. Any food or drink that goes in his mouth just dribbles right back out, as if he has low tone in his lips. His temperature is back up too, back to 102. Great. He’s exhausted AND has a high fever, both of which lower the seizure threshold. More ibuprofen and Tylenol. Why is Ollie so hyper and strange? Did they give him too much Ativan? Shouldn’t it have worn off by now? I just wish he would sleep… he needs sleep so much. He is getting dehydrated too, so we may have to bring him back to the ER if he can’t get any liquids down. Dehydration is more of an issue for him because he is on a seizure medication that causes kidney stones if he gets dehydrated. No more seizures at least. I give him pedialyte through a syringe and inwardly cheer as he is able to swallow a little before it dribbles down his chin. Calls to the doctors. I tell Jadey to go sleep a little, because tonight might be another long, sleepless night.
2/7/11 4:30 pm
Still no word from the doctors. Oliver is still hyper and playful and not a bit sleepy. He is still having trouble drinking milk; maybe he is uninterested, I’m not really sure. I am trying to get more pedialyte down him, which sometimes works ok. The pedialyte drips out of his mouth more often when he is upright, so I try to have him drink it when he is on his back. Of course, this makes him more prone to choking given his swallowing problems. I am wondering if I should take off his medical bracelet, and I decide to leave it on. Maybe Murphy’s law will work for me instead of against me, and leaving the bracelet on will mean we don’t have to go the hospital tonight and get another one. Ollie’s fever seems to have broken from all the medicine I gave him a couple of hours ago, so that’s good.
