Friday, 8-14-09
I came across this quote from Lysa TerKeurst's blog:
Life. Sometimes it hands us messy. Sometimes it hands us flowers. And the unpredictability of it all is what makes life exciting and heartbreaking all at the same time. And reminds us to remain completely dependent on Jesus. Amen!
I came across this quote from Lysa TerKeurst's blog:Life. Sometimes it hands us messy. Sometimes it hands us flowers. And the unpredictability of it all is what makes life exciting and heartbreaking all at the same time. And reminds us to remain completely dependent on Jesus. Amen!
That is so, so true. Life can't always be a "bed or roses" and the hard times are when we cling to Jesus and our faith grows and we find out how much we are wrapped in love here on earth. This thought was preparing me for the news to come.
Around 11pm I finally laid down to get a little sleep in the chair/bed next to Lissy. Just after midnight someone came in and started checking Elissa and I kind of ignored her, but then she started telling me who she was and that she was the neurologist......my mind pops awake and I try to wake up to hear what she is saying and to comprehend what she is saying. I think - should I call Darin - but I know she won't be here that long. I just have to do the best I can. So she tells me that Elissa's EEG has come back ABNORMAL - I want to burst out in tears right now, but I have to keep it together.
What does that mean?? It is showing that she is prone to seizures. With the right stimulus or something, she will have a seizure. She may grow out of it, but we don't know. We don't know why she has an abnormality and there is really no way to find out. She will continue to be on anti-seizure meds for probably a couple of years unless she has several EEGs that show she no longer has the abnormality. There is a possibility that they will do a prolonged EEG study so they can determine if the hallucinations that Elissa is having are related to a seizure.
What does this mean for our life - her life?? You have to be cautious in what she does. She must swim with a life vest in case she has a seizure in the water (Elissa hasn't swam w/a life vest all year - she won't like this). She must wear a helmet when she is on her bike or scooter or anything like that (I'll have to make her when she rides around on the back deck). She has to be careful when she plays sports. What about soccer this fall? At that age, it is fine. If she is still dealing with this when she is a teen, then you might reconsider sports. You have to make your school aware of the situation and determine a plan of action if she has a seizure at school. You can't leave her with anyone that doesn't know how to respond to her having a seizure. (Kirstin comes to mind and what she has to deal with regarding Payton and his diabetes. All the school decisions and only certain people she can leave him with. Wow, that is me too now.) We will have to watch a video to train ourselves to administer medication to her if she has a seizure and anyone else watching her. How do I watch her day and night?? Well, you do what you can do. Use a baby monitor in her room to listen to her - though I would have her sleep with me the first week or so (there goes the beautiful loft bed I waited months to show up for her - can't have her have a seizure up there again).
My mind is racing, racing, racing trying to ask all the right questions and remember what she tells me so that I can relay it back to Darin. Anyone that knows my husband knows that he is very analytical and will have a million questions that I feel I must have an answer for - lots of pressure! Though the Dr said that another neuro Dr will be making rounds in the morning, so I know that Darin will have a chance to speak with a neuro Dr. Whew! :0)
Can you say - OVERWHELMED - that is me! Life changes with one sentence.
So now it is just after 1am and I can't sleep with all this info going through my head. I'm on the computer for awhile and then Elissa wakes up a little after 2am and is up to stay for awhile. She is really off on her sleeping schedule. She is hallucinating again this morning. :0( I tell the nurse every time she says something about spiders so they can note it in her chart for the Dr. So we start watching Barbie Thumbelina one more time. At 3:09am I call Darin to tell him that I'm ready to go take my few hours of sleep. :0) He was in the shower getting ready to come over.
It was hard to tell Darin about the EEG, but I wasn't too emotional at that time because I was just so exhausted. We talked through it and left him with questions to ask the next neuro Dr. Now sleep for me! While I was sleeping, Darin was taking Elissa on a wheel chair ride and teaching her how to wheel herself around. She was also seeing spiders and spiders webs during their ride. Then they watched a little more movie and she was ready to go back to sleep.
Mom called me at 8:20am. I was just starting to think about getting up, so up I was. I called Darin and Elissa was still sleeping and he already had coffee, so I didn't need to run back to the room. I went to the cafeteria and had breakfast. Then I stopped in the gift shop to see if there was anything I wanted to get Elissa. I'm walking in the shop and I'm overcome by sadness with my little girl having to go through this. I walk out and call Kirstin, my BFF, and just talk to her about the ordeal and cry and get it all out. She definately understands, since her little boy Payton (just 3 days older then Elissa) was diagnosed with childhood diabetes. I needed that little "break down" time.
Soon after I got back to the room, the 2nd neuro Dr and peds Dr came in about 10am. They did not feel that there was a need for an EEG extended study. By this time I had thought that this really needed to happen because of all the hallucinations going on earlier in the morning. I was not accepting that answer. The neuro Dr explained that he was fairly confident that the hallucinations were not seizure related, but rather sleep deprivation, mixed with meds and brain fatigue from the seizure. The hallucinations that Elissa described were not ones that are usual with seizures. So I conceded and trusted that God had given them wisdom to give us the right answer.
They also said that they were ready to discharge us.....what?? I'm floored and scared. After Elissa "crashed" last night and then still hallucinations this morning, I was pretty sure we were going to be there through the weekend. They saw that she was improving each day and were not concerned about the hallucinations. So we needed to get her up and walking around and eating more so that she could go home.
Dennis arrived soon after. Elissa was excited to get back in the wheel chair. I was completely amazed to see how she could wheel that thing around and maneuver in and out and around. It was such a crack up! It was so good to see her acting a little normal. :0)
So we did a little touring of the 6th and 7th floors.
Dennis left and then Patty showed up. She talked Darin into letting her take Elissa down to the gift shop. :0) She came back up with yet another stuffed animal - a puppy w/carrier and color book and crayons. They even got Zach a Curious George fireman stuffed animal. Then Patty stayed with Elissa so Darin and I could go get some lunch together - just after 1:30pm.
When we got back Elissa was taking a nap. Patty left and the neuro Dr came at 3:30pm. He confirmed that Lissy was ready to go home and gave us home care instructions and a big book to read - Seizures and Epilepsy in Childhood, A Guide. Something you re ally don't want to see on your coffee table.
Elissa rolled herself out of her room and out to the car. We left the hospital around 4:30pm. Yeah!! Darin went and got Zach while Elissa and I got showered and I took about 20 minutes to get all the rats out of Elissa's hair. Darin picked up some movies and snacks a nd we hung out the rest of the evening. We all went to bed at the same time and Elissa slept between us.
It really did end up being a pretty restful night. I just slept light and checked her when she moved or made noise - but it wasn't bad or as stressful as I thought it would be. It definitely was the prayers that helped.
Around 11pm I finally laid down to get a little sleep in the chair/bed next to Lissy. Just after midnight someone came in and started checking Elissa and I kind of ignored her, but then she started telling me who she was and that she was the neurologist......my mind pops awake and I try to wake up to hear what she is saying and to comprehend what she is saying. I think - should I call Darin - but I know she won't be here that long. I just have to do the best I can. So she tells me that Elissa's EEG has come back ABNORMAL - I want to burst out in tears right now, but I have to keep it together.
What does that mean?? It is showing that she is prone to seizures. With the right stimulus or something, she will have a seizure. She may grow out of it, but we don't know. We don't know why she has an abnormality and there is really no way to find out. She will continue to be on anti-seizure meds for probably a couple of years unless she has several EEGs that show she no longer has the abnormality. There is a possibility that they will do a prolonged EEG study so they can determine if the hallucinations that Elissa is having are related to a seizure.
What does this mean for our life - her life?? You have to be cautious in what she does. She must swim with a life vest in case she has a seizure in the water (Elissa hasn't swam w/a life vest all year - she won't like this). She must wear a helmet when she is on her bike or scooter or anything like that (I'll have to make her when she rides around on the back deck). She has to be careful when she plays sports. What about soccer this fall? At that age, it is fine. If she is still dealing with this when she is a teen, then you might reconsider sports. You have to make your school aware of the situation and determine a plan of action if she has a seizure at school. You can't leave her with anyone that doesn't know how to respond to her having a seizure. (Kirstin comes to mind and what she has to deal with regarding Payton and his diabetes. All the school decisions and only certain people she can leave him with. Wow, that is me too now.) We will have to watch a video to train ourselves to administer medication to her if she has a seizure and anyone else watching her. How do I watch her day and night?? Well, you do what you can do. Use a baby monitor in her room to listen to her - though I would have her sleep with me the first week or so (there goes the beautiful loft bed I waited months to show up for her - can't have her have a seizure up there again).
My mind is racing, racing, racing trying to ask all the right questions and remember what she tells me so that I can relay it back to Darin. Anyone that knows my husband knows that he is very analytical and will have a million questions that I feel I must have an answer for - lots of pressure! Though the Dr said that another neuro Dr will be making rounds in the morning, so I know that Darin will have a chance to speak with a neuro Dr. Whew! :0)
Can you say - OVERWHELMED - that is me! Life changes with one sentence.
So now it is just after 1am and I can't sleep with all this info going through my head. I'm on the computer for awhile and then Elissa wakes up a little after 2am and is up to stay for awhile. She is really off on her sleeping schedule. She is hallucinating again this morning. :0( I tell the nurse every time she says something about spiders so they can note it in her chart for the Dr. So we start watching Barbie Thumbelina one more time. At 3:09am I call Darin to tell him that I'm ready to go take my few hours of sleep. :0) He was in the shower getting ready to come over.
It was hard to tell Darin about the EEG, but I wasn't too emotional at that time because I was just so exhausted. We talked through it and left him with questions to ask the next neuro Dr. Now sleep for me! While I was sleeping, Darin was taking Elissa on a wheel chair ride and teaching her how to wheel herself around. She was also seeing spiders and spiders webs during their ride. Then they watched a little more movie and she was ready to go back to sleep.
Mom called me at 8:20am. I was just starting to think about getting up, so up I was. I called Darin and Elissa was still sleeping and he already had coffee, so I didn't need to run back to the room. I went to the cafeteria and had breakfast. Then I stopped in the gift shop to see if there was anything I wanted to get Elissa. I'm walking in the shop and I'm overcome by sadness with my little girl having to go through this. I walk out and call Kirstin, my BFF, and just talk to her about the ordeal and cry and get it all out. She definately understands, since her little boy Payton (just 3 days older then Elissa) was diagnosed with childhood diabetes. I needed that little "break down" time.Soon after I got back to the room, the 2nd neuro Dr and peds Dr came in about 10am. They did not feel that there was a need for an EEG extended study. By this time I had thought that this really needed to happen because of all the hallucinations going on earlier in the morning. I was not accepting that answer. The neuro Dr explained that he was fairly confident that the hallucinations were not seizure related, but rather sleep deprivation, mixed with meds and brain fatigue from the seizure. The hallucinations that Elissa described were not ones that are usual with seizures. So I conceded and trusted that God had given them wisdom to give us the right answer.
They also said that they were ready to discharge us.....what?? I'm floored and scared. After Elissa "crashed" last night and then still hallucinations this morning, I was pretty sure we were going to be there through the weekend. They saw that she was improving each day and were not concerned about the hallucinations. So we needed to get her up and walking around and eating more so that she could go home.
Dennis arrived soon after. Elissa was excited to get back in the wheel chair. I was completely amazed to see how she could wheel that thing around and maneuver in and out and around. It was such a crack up! It was so good to see her acting a little normal. :0)
So we did a little touring of the 6th and 7th floors.
Dennis left and then Patty showed up. She talked Darin into letting her take Elissa down to the gift shop. :0) She came back up with yet another stuffed animal - a puppy w/carrier and color book and crayons. They even got Zach a Curious George fireman stuffed animal. Then Patty stayed with Elissa so Darin and I could go get some lunch together - just after 1:30pm.When we got back Elissa was taking a nap. Patty left and the neuro Dr came at 3:30pm. He confirmed that Lissy was ready to go home and gave us home care instructions and a big book to read - Seizures and Epilepsy in Childhood, A Guide. Something you re ally don't want to see on your coffee table.
Elissa rolled herself out of her room and out to the car. We left the hospital around 4:30pm. Yeah!! Darin went and got Zach while Elissa and I got showered and I took about 20 minutes to get all the rats out of Elissa's hair. Darin picked up some movies and snacks a nd we hung out the rest of the evening. We all went to bed at the same time and Elissa slept between us.
It really did end up being a pretty restful night. I just slept light and checked her when she moved or made noise - but it wasn't bad or as stressful as I thought it would be. It definitely was the prayers that helped.Now we just move on to finding out what our new "normal" will be.
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