That's right -- we're home! Oliver was discharged earlier today. The doctor's assistant said that none of the episodes that I noted were seizures. I still think that they look abnormal -- more than average "baby stuff" -- but I'm guessing if it was anything alarming, it would have shown up on the EEG. I'm still a little nervous that maybe we didn't capture the right thing, but I think that overall he did everything at the hospital that I've seen him do at home. I just have to hope and pray that this is right -- I have faith God is steering us in the right direction.
So, that's it. I was on my way home from teaching when Tim called me to let me know that they were being discharged. So I got some wine and headed home. We all played outside a little bit, I got to put Mac to bed, and now we're relaxing and watching some Magnum PI. Seriously, this is the life. Poor Oliver has blisters from where the electrodes were on his head, but he seems happy anyway. Really, there is no place like home.
22 April 2008
Update
We're still here, hanging out in the hospital. We made it through the first night. A
little bedtime, Oliver did some of his twitching. I was actually relieved, since that means it will be on tape. I don't know if I mentioned it before, but every time I see him have an "episode" I'm supposed to press a button that marks it on the tape. And then I also write down what I saw so that they know what to look for. As I do this, I check the time on the EEG machine and note it, also. Each time I check the screen to see what the EEG output looks like, as if I can note normal v. abnormal brain patterns. Even though I have no idea what it means, it does create a nice little mini-obsession/distraction for me. And apparently, the doctor can check the feed and/or video right in his office. He is supposed to contact us later to let us know what he has seen so far. Hopefully, we will get good news and an early release. We'll see.
Mac came to visit last night. We had a good visit until it was time to go. She wanted daddy to stay with Oliver and me to go home with her. She cried when she was leaving. I felt so bad. So far, we have been able to marginalize Oliver's illness for her, since most of his doctor appointments have been on a Wednesdays, when she is at school. I usually don't even tell her that is where we are going, in case I am late picking her up. I usually just tell her I am at work. Let her resent that, instead. And even though we have PT, she gets to help out when she is home. But sometimes, like now, we have to tell her what is going on. I just hope that this isn't the beginning of resentment, abandonment issues, or jealousy. I am acutely aware of the fact that Oliver's condition can adversely affect her, and am not entirely sure how to deal with it.
And of course, there are the old-fashioned sibling issues of sharing and kindness to deal with. Here is Mackensie "sharing" her new dolls with Oliver last night. In my rush to get everything together, I forgot to bring many toys for Oliver. So when Mac came with dolls, we tried to get her to share. She did for a while, but she never let him forget whose dolls they really were (in keeping with her belief that everything really belongs to Mackensie).
And I'd like to give special thanks to Da_Bitchez, who continue to support my sporadic internet access during this hospital stay.
little bedtime, Oliver did some of his twitching. I was actually relieved, since that means it will be on tape. I don't know if I mentioned it before, but every time I see him have an "episode" I'm supposed to press a button that marks it on the tape. And then I also write down what I saw so that they know what to look for. As I do this, I check the time on the EEG machine and note it, also. Each time I check the screen to see what the EEG output looks like, as if I can note normal v. abnormal brain patterns. Even though I have no idea what it means, it does create a nice little mini-obsession/distraction for me. And apparently, the doctor can check the feed and/or video right in his office. He is supposed to contact us later to let us know what he has seen so far. Hopefully, we will get good news and an early release. We'll see.
Mac came to visit last night. We had a good visit until it was time to go. She wanted daddy to stay with Oliver and me to go home with her. She cried when she was leaving. I felt so bad. So far, we have been able to marginalize Oliver's illness for her, since most of his doctor appointments have been on a Wednesdays, when she is at school. I usually don't even tell her that is where we are going, in case I am late picking her up. I usually just tell her I am at work. Let her resent that, instead. And even though we have PT, she gets to help out when she is home. But sometimes, like now, we have to tell her what is going on. I just hope that this isn't the beginning of resentment, abandonment issues, or jealousy. I am acutely aware of the fact that Oliver's condition can adversely affect her, and am not entirely sure how to deal with it.
And of course, there are the old-fashioned sibling issues of sharing and kindness to deal with. Here is Mackensie "sharing" her new dolls with Oliver last night. In my rush to get everything together, I forgot to bring many toys for Oliver. So when Mac came with dolls, we tried to get her to share. She did for a while, but she never let him forget whose dolls they really were (in keeping with her belief that everything really belongs to Mackensie).
And I'd like to give special thanks to Da_Bitchez, who continue to support my sporadic internet access during this hospital stay.
21 April 2008
So here we are...
at the hospital. We decided to go ahead with the 3-day EEG. The doctor never really gave us a choice, but we had debated whether or not it was worth it. Oliver had a few episodes last weekend, but a basically twitch-free week. A few here and there, but nothing over the top. So yesterday I decided to do a little internet research, which I had purposely stayed away from because I didn't want to freak myself out. But then I also thought that if I was committing to a three day stay in the hospital, I should know what it is for. And the research did scare me, but mostly because it doesn't sound that much different from what he is doing. And that brings us to today. It was supposed to start at one o'clock, but we really just got things underway around 4:30. We have our own private room, which is nice. I'll stay with Oliver and Tim will take care of Mac on the home front. Of course, they will come visit. And he'll spell me so that I can go teach tomorrow. But basically, Oli and I are going to have some quality time for the next few days.
To prepare him for the EEG, they had to use the most foul smelling glue to keep the electrodes on his head. He cried, but not too bad. Towards the end, he "fell asleep." I personally think that he passed out from the fumes, but the tech insisted that all babies fall asleep from fighting and crying. Mmm, I'm not so sure. I was ready to pass out, and he is a lot smaller than I am.
I'm trying to use this time productively to get my dissertation done, but I only have sporadic internet access. The hospital doesn't have wireless, so I'm pirating internet from Da_Bitchez. I can only guess that is the wireless network of one of the local college students.
I also bought a novel to read (another James Patterson -- it was all they really had at the food store this morning) and I brought Enchanted to watch. So Mr. Man and I will snuggle up for the night and relax.
To prepare him for the EEG, they had to use the most foul smelling glue to keep the electrodes on his head. He cried, but not too bad. Towards the end, he "fell asleep." I personally think that he passed out from the fumes, but the tech insisted that all babies fall asleep from fighting and crying. Mmm, I'm not so sure. I was ready to pass out, and he is a lot smaller than I am.
I'm trying to use this time productively to get my dissertation done, but I only have sporadic internet access. The hospital doesn't have wireless, so I'm pirating internet from Da_Bitchez. I can only guess that is the wireless network of one of the local college students.
I also bought a novel to read (another James Patterson -- it was all they really had at the food store this morning) and I brought Enchanted to watch. So Mr. Man and I will snuggle up for the night and relax.
18 April 2008
Spring Fever!
It's bad when even the instructor gets spring fever...but I get it every year. I hate the winter and LOVE the spring. I love the summer even more. And we are finally having a few consecutive days of really amazing weather. I don't want to do anything excpet hang around with the windows open, eat at an outside table, or just run mindless errands. It doesn't help that both of the classes I teach are annoying me -- one is really smart and good at following directions, but not so great at participation. The other class has a pretty good cohesive and conversational feel, but they can't follow directions or complete assignments to save their lives (or their grades). I'm supposed to be doing my lesson plans for next week now (doing all of them on Friday is my way to clear up the rest of the week for dissertation work), but I can't stop looking out the window and willing a distraction to come my way. Of course, one of my two favorite distractions is at school right now, and the other is asleep. I know I'll be sorry later if I don't get my work done now.
Spring is also becoming a time for trips to the hospital. It's just about a year ago today that we visited CHOP for the first time for prenatal testing. What a difference a year makes. Now, we are waiting for our insurance to clear a 3-day hospital stay for a video EEG for Oliver. Even though they haven't found anything wrong, the neurologist still wants to rule things out. I don't actually think that it is necessary, but what if it is? Ugh. When I asked if I could send the office video of Oliver doing his jerking, they said not to bother, and to just bring it for the procedure. Pretty frustrating. And I haven't been able to get in touch with the office to a)ask if the EEG is on for Monday, and b) talk to somebody else about sending the video clips. Even though they don't capture everything, I'd like to doctor to at least see them before committing to three days in the hospital.
I think I hear said distraction stirring. Saved from doing more work!
Spring is also becoming a time for trips to the hospital. It's just about a year ago today that we visited CHOP for the first time for prenatal testing. What a difference a year makes. Now, we are waiting for our insurance to clear a 3-day hospital stay for a video EEG for Oliver. Even though they haven't found anything wrong, the neurologist still wants to rule things out. I don't actually think that it is necessary, but what if it is? Ugh. When I asked if I could send the office video of Oliver doing his jerking, they said not to bother, and to just bring it for the procedure. Pretty frustrating. And I haven't been able to get in touch with the office to a)ask if the EEG is on for Monday, and b) talk to somebody else about sending the video clips. Even though they don't capture everything, I'd like to doctor to at least see them before committing to three days in the hospital.
I think I hear said distraction stirring. Saved from doing more work!
13 April 2008
Another Day, Another EEG
On Thursday, Tim took Oliver for his neurology appointment to follow up on the EEG. Although we knew that the results were normal, we still had an appointment to discuss what the twitching could be. I called CHOP and spoke to spina bifida clinic and neurosurgery to let them know what was going on, and to see if it sounded at all spina bifida related. They said that it didn't, but to make sure that the neurologist ruled out infantile spasms. I'm not sure if the neurologist thought they were a possibility, or if he was just unaccustomed to patients coming in with knowledge of possible conditions, but he ordered another EEG for Friday in order to rule them out. Thank God, that one also came back normal. He called me at 8:30 onh Friday night (talk about scary) in order to give me the results, and tell me that he wants to do a video EEG. He had mentioned this to Tim, as well. So I'm going along with this, until I realize that it is a 3 day procedure for which Oliver would have to be in the hospital. Um, what? Three days in the hospital? I'm torn -- while I want to be absolutely sure that there is nothing going on, this seems to be overkill. Are we looking to find something, or just rule something out? Either way, I would rather err on the side of caution. But where do I draw the line?
So the doctor is getting the ball rolling with pre-certification with my insurance company. In the meantime, I'm trying to catch the twitching on video so that I can show him. I caught a few instances that I'll try to e-mail to him. I'm hoping that he can diagnose from the videos.
So, here we go. Hopefully everything will be okay.
And in the middle of everything, Oliver got two teeth!
So the doctor is getting the ball rolling with pre-certification with my insurance company. In the meantime, I'm trying to catch the twitching on video so that I can show him. I caught a few instances that I'll try to e-mail to him. I'm hoping that he can diagnose from the videos.
So, here we go. Hopefully everything will be okay.
And in the middle of everything, Oliver got two teeth!
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