October 10-14, 2010 is what I consider Oliver’s diagnosis week. October 10th of last year was when we realized that Oliver was having seizures, and he got his diagnosis of tuberous sclerosis on the 14th. For the 1-year anniversary of his diagnosis, we spent the week in the hospital having a 5-day EEG study.
10/10/2011
7:45am
Well, it has been a rough morning. Jadey was up at 6:15 after getting about 1 ½ hours of sleep, getting ready to take Oliver to the hospital. Jadey’s at the hospital checking in right now, and I am at work. Jadey is with Ollie today, tonight, and tomorrow while I work. I will take over from there and be with Oliver the rest of the week while Jadey works. It’s a nice idea in theory since it minimizes the time off from work that we have to take, but in practice, I can already tell it is going to be exhausting. Let’s hope this EEG study gives us some worthwhile information.
3:00pm
Jadey tells me he and Oliver are doing alright. Jadey says the room they are in has a computer monitor with the camera attached to it, so not as nice as the built-in camera in the ceiling that I had when we were there overnight. I guess the nurses come in every 40 minutes or so to move the camera to try to get Oliver on it as much as possible. My guess is that the doctors are monitoring him pretty closely, hoping to see some seizures so they won’t have to decrease meds. No seizures so far though. Of course there aren’t any seizures when we actually want them. Jadey is minimizing Oliver’s sleep to hopefully cause seizures, so Ollie is cranky and tired. It’s a strange thing to actually want seizures to happen.
10/10/2010
They say the not knowing is the worst part. Sometimes that’s definitely true. Initially, the discovery that Oliver was having seizures was a huge relief. Our lives were characterized by uncertainty, groundless hope, and despair. When Jadey found information about infantile spasms on an epilepsy website, we were actually happy. We could finally pinpoint what the problem was, and with that knowledge, we could find a solution. We watched videos of children having infantile spasms on youtube, which only made us more certain. Putting a name to those strange, jerky movements made us hate them even more. October 10, 2010 was a Sunday, so there wasn’t much we could do in the way of scheduling appointments until the next day; we planned and discussed our next course of action. We took lots of videos of Oliver having the spasms so we would have something to show the doctors in the hopes that they would take us seriously.
10/11/2011
8:00am
Jadey says they are doing just fine. He says Oliver had what looked like a seizure last night while falling asleep. Ollie was almost asleep, and then he woke up and stared around a little, then played with his toys for awhile before falling back asleep.
2:30pm
I get a message from Jadey saying to call him immediately. Oh great. He says that a neurologist came in, told him that the episode the previous night was not a seizure, and told him that the tubers on the right side of Oliver’s brain seem to be more active than those on the left side (opposite of what they saw in the last EEG). Then, he said that we would probably be discharged today. Jadey asked the doctor about the plan to go off Topamax in order to see more seizures, and the doctor said that yes, it is probably a good idea to go off Topamax since it can cause word finding problems. Not at all what Jadey was asking! I am kinda freaking out since this doctor seems to have no clue what is going on with Oliver’s case or about the reason we are here. If we were to go home early, everything we have done so far would be a total waste. Our time off work, Jadey’s stress dealing with the lack of sleep and trying to keep Oliver awake and happy, the money we would have to pay for the 2 days of EEG, everything. We have NO information yet! I’m sure we would end up having to schedule another 5-day EEG as soon as they can fit us in, which would be in a couple of months. I frantically call and leave a message for our neurologist and send her a desperate email. She gets back to me right away and tells me that the other neurologist contacted her and that we are still planning on doing the 5 days. Whew!! That was close! I guess it was crazy for me to assume that the doctors that would be dealing with us during this big, important 5-day hospital stay would have a clue about what was going on…
10/11/2010
Monday morning. Jadey has the day off, and I am at work at 8:00am. As soon as the neurology appointment center at Children’s opens, I am on the phone. I ask for our late-November appointment to be moved up due to emergency circumstances, and I get transferred to the urgent scheduler. He says he can’t schedule an urgent appointment without a request from a pediatrician since Oliver would be a new patient to the hospital.
Meanwhile, Jadey is calling our pediatrician’s office, trying to get a referral. When he is finally able to talk to the doctor, the doctor tells him that he can try to get our appointment moved up, but he doesn’t think it will work. He says he has tried to get urgent appointments scheduled at Children’s, and his attempts have always been unsuccessful. Great. Thanks for nothing, buddy. He tells us we should go to Rocky Mountain Hospital for Children instead; he is friends with one of the neurologists there, who he said was excellent. I call Rocky Mountain, and they are able to schedule us on Wednesday the 13th, although it isn’t with the neurologist our pediatrician recommended. Finally, a plan!
10/12/2011
9:15am
The PA just came in and had more questions about the seizures. She told me they are probably not going to decrease Oliver’s meds during the study, and the doctor from yesterday who told us we were getting discharged is reviewing the EEG from last night. He will come in sometime soon and go over it with me. I’m kind of worried, not really sure what is going to happen. I really hope we get some good information from this study, and now I am not sure that is going to happen.
Apparently, Oliver’s EEG shows that he isn’t having any seizures. The doctor says that seizure activity often decreases when kids come in for long stays since they are much less mobile. This totally makes sense, because Oliver is constantly on the move at home. Here in the hospital, he is a lot more willing to just hang out in his crib or with me, probably because he is so tired from being made to stay awake. Decreased physical activity equates to decreased seizure activity.
I spend the day hanging out with Oliver, playing with him and trying to keep him awake. It is NO FUN keeping an exhausted baby awake. I keep him awake as long as I can, and then when he is too exhausted to stay awake, I let him sleep. Then, 15 minutes later, I wake him back up, and he cries and cries. Poor little bear. Ollie and I have some guests today during the day and in the evening, so nice.
10/12/2010
It is Tuesday; Jadey and I are both working, inwardly twiddling our thumbs until our neurology appointment the following day. Jadey requests Wednesday off at work so he can come to the appointment. I spend every free minute at work researching infantile spasms online. I find out that after diagnosing the spasms with a video EEG, they will want to find out the cause, which could be any number of things. Brain bleeds, malformations, injuries; all these and more can cause infantile spasms. This is the first time I read the words “tuberous sclerosis”. I find out that it is one of the worse causes of infantile spasms; severe developmental delays and intractable epilepsy usually follow the spasms. I also discover that tuberous sclerosis is a genetic disease, which puts my mind at ease. People with genetic diseases have a “different” look, and Oliver is a very normal-looking, adorable little boy. Also, no one on either side of our families has anything even remotely resembling tuberous sclerosis. I am sure Oliver definitely does not have a genetic disease. I find out that the best developmental outcome occurs when the spasms are idiopathic, when there is no apparent reason they are happening. I set my mind on Oliver’s infantile spasms being of the idiopathic variety. After work, we find the best videos that we have taken of Oliver’s spasms and prepare to fight to get help for him. I look up the neurologist we are going to be seeing as well as the one the pediatrician recommended. Turns out, the one who will be seeing Oliver is the epilepsy specialist at the hospital, and the one the pediatrician recommended specializes in sleep disorders. Wow, thanks for nothing yet again, Dr. B.
10/13/2011
Today was a long day for me. I hadn’t been too stir-crazy yet, mostly probably because I was just happy to be at the hospital with my baby rather than at work. Today, my parents were coming, and I was looking forward to having something to break up the monotony of the hospital stay. The lack of sleep was starting to tell on me, too. The nurses were really nice all week about coming in to offer me some time out of the room. Although today when I actually told them I would like to get out of the room for a few minutes, no one turned up for about an hour and a half, only after I called them again to ask if they were coming. Today’s nurse was not very good about checking in. I only saw her a couple of times all day. It was also really annoying that they had to come check his blood pressure and heart rate all day, too. He hated it, so he would cry, so his readings would come back too high, so 30 minutes later, they would be back to try again. ARGH!! His blood pressure is FINE. It’s his BRAIN that’s the problem here. One funny thing happened today though. Oliver was hooked up to all these wires with a little backpack, and he would march back and forth across the room all day (the nurses had a nightmare of a time keeping him on camera J). The more he marched, the more the cords would get twisted. They got so twisted that he could barely even walk across the room anymore. That was when I noticed- he was only turning right! My little Derek Zoolander couldn’t turn left! Hilarious!
My parents came in to town tonight to help us out at the hospital and afterward. It was really nice to see them. I was going to go out with Jadey to get pizza and get away from the hospital while my parents watched Oliver. Even though it was time for his meds, I figured my mom could take care of it since she had done it this past summer when they watched him for a week and a half. Last-minute though, I decided to stay and give him his meds myself. It was a good thing I did, too. They sent in his medicine, and I noticed that there was only 1 pill of Topamax rather than 2. I called to have the nurse come in to bring us the rest of his medicine. 45 minutes later, she came breezing in, and I told her about the missing pill. That was when she said, “Oh, didn’t they tell you? They decided to decrease his meds tonight.” So I pretty much freaked out. After all this talk about decreasing his meds during the study, and them deciding not to, the night before we are going to go home, they decide to go ahead with it without even telling us??? What does this mean?? Are we not going home tomorrow as planned?? Are they going to send us home tomorrow anyway, and then he will have seizures at home because of the reduced doses? What is going on here, and why isn’t anyone communicating with us? It was awful. And on top of it all, Oliver wouldn’t take his medicine because he was too cranky and tired to want to eat. I was so stressed out, I decided that he would just have to miss his dose for tonight. I couldn’t handle forcing Oliver to do things that he didn’t want to do any more. Well, that of course wasn’t ok with the nurses, so they came in later that night, woke Oliver up, and forced his meds down his throat while he screamed. It was a mess. What a terrible night.
10/13/2010
Finally, the appointment day has arrived! We arrive in plenty of time and find the office with no trouble, thanks to the directions that we get from a hospital worker who turns out to be the CEO of the hospital. J The doctor we are seeing is so wonderful. He listens to our description, watches the video, and within a couple seconds immediately knows that Oliver is indeed having infantile spasms. He explains to us very well, knowledgeably, and clearly, everything we already knew from our online research. Finally, a doctor that believes us and actually knows what he is talking about! The neurologist knew from looking at our paperwork that I worked at Children’s, and he offers to transfer us over there if we prefer. Which is really nice of him since his hospital could have handled it just fine. So over to Children’s we go, and all it took was a phone call. They hook Oliver up right away for an overnight EEG, and I camp out with him in the hospital. What a feeling of relief, to finally be on the right track.
10/14/11
I woke up not knowing what was going to happen. I didn’t know if we were, in fact, going home today as planned. The nurse brought in Oliver’s meds, which were the normal amount. Apparently, they had just decided to decrease the evening dose and were sending us home with a lower dose of Topamax. Information that would have been helpful to me YESTERDAY. And yes, we were going home. Mom came and helped me pack up and haul everything out. What an awful day yesterday was. I couldn’t wait to get home.
10/14/10
The EEG of course confirms that Oliver is having infantile spasms. It also shows that he is having complex partial seizures, which we didn’t know. The doctors go over our treatment options, which differ based on the cause of the seizures, and they schedule an MRI for later that morning. Which in my mind, of course, is going to rule out brain bleeds, malformations, and that weird genetic disease. I am really happy, just relieved that we are doing something and are on the right track. Jadey had gone home Wednesday night since he was planning to work on Thursday (today), and while I am waiting for Oliver to get done with the MRI, he calls and says he is on his way over. Apparently, he is having a hard time focusing at work… I can’t imagine why..
It ended up being a good thing that Jadey came, because when I got paged that Oliver was done with the MRI and would be waking up from the anesthesia, it wasn’t a nurse who met me. It was the neurologist herself, the one who would end up being Oliver’s main neurologist. She told me that they found several brain tubers and that it was, indeed, tuberous sclerosis. That was when everything about our hospital stay changed from being a relief to being really serious and really bad. Our worst-case scenario had become reality.
When I went in to see Oliver as he was waking up from the anesthesia, minutes after learning his diagnosis, I remember being standoff-ish toward him at first, a little leery of caring for such a sick baby. For that brief time, he didn’t seem like my baby anymore. My baby was a HEALTHY baby, not a sick, broken one with a body full of tumors.
It’s strange how memory works. Some of my post-MRI memories are really clear, and some things are foggy. I remember with perfect precision which table I sat at with the neurologist when she told me about his diagnosis. Since that day, I have walked past that table several times, and every time I remember. I didn’t cry through her discussion of what seizure med we would start him on and when we would get discharged from the hospital. I didn’t cry until the end of the conversation, until she said she was really sorry. I don’t really remember much of getting Oliver back into the hospital room, or of the other tests they did later that day to check for other tubers throughout his body. I remember that I was the one to tell Jadey, but I don’t really remember how he reacted. I sort of remember that there were a lot of doctors and nurses coming and telling us things, but I don’t remember what they told us. I don’t remember going home or what we did once we got there.
What a life-changing diagnosis, tuberous sclerosis.
