It is the night before surgery. My stomach is in knots. Everybody is asleep in the house, of course, except me. We went to church this morning and then the rest of the day was spent packing and getting things ready for our hospital stay. Emily and I packed her a little bag of stuff to do in case she feels like it. We packed some crayons, coloring books, the portable DVD player and some movies, and a few other small things. Of course I had to pack my laptop, books, snacks, and clothes for us, too.
Here is a little funny story. When I was talking to the pre-op nurse the other day, she had asked me if Emily has any loose teeth right now. I told her that she does have some. She has her two upper front teeth loose, one of them is very loose. The nurse said, "Oh no. The anesthesiologist is just going to have to be very careful so the teeth don't get knocked out." Well, I was talking to Emily this morning and I was telling her about that conversation. Emily said, "OH GOOD!!!!!! Maybe they WILL knock them out while I'm asleep in surgery. And then the doctors can just go ahead and put them under the pillow and the tooth fairy can just come while I'm in the hospital." It was so darn cute when she said it. I'm going to have to tell the doctors tomorrow that it is okay if her teeth get knocked out. Ha-ha!
On a more somber note. Emily had another headache episode today. I hate that she had to have one, but then again, it did reaffirm to me that we are doing the right thing tomorrow. It is just horrible watching her suffer. She needs some relief soon!!!!
Sunday, June 7, 2009
Saturday, June 6, 2009
Emily's Nightmare
I have to tell about the nightmare that Emily had. Now, she is one that NEVER has nightmares. The only time we had problems with her and nightmares was for about a month or so after her surgery last year, she was traumatized for a while and we dealt with some pretty bad ones. But typically, she doesn't have them.
Emily came to me in the middle of the night and was very upset. She said that she had a bad dream. I asked her what happened in her dream and this is what she told me. She said that she was standing outside and there was a tornado coming. She was all alone and scared because she couldn't get inside the house. She said that me, Daddy, and Ethan were inside the house and were safe inside the closet, but she was outside while the tornado was heading right for her and our house.
I got her and put her in my bed next to me and snuggled up next to her. I told her that I bet she was very scared by that dream, but that she was safe now and everything is okay. She and I slept together sharing a pillow the rest of the night.
I can only imagine the kind of fear that she must have going on inside her right now. If only there was a way that I could take it all away!
Emily came to me in the middle of the night and was very upset. She said that she had a bad dream. I asked her what happened in her dream and this is what she told me. She said that she was standing outside and there was a tornado coming. She was all alone and scared because she couldn't get inside the house. She said that me, Daddy, and Ethan were inside the house and were safe inside the closet, but she was outside while the tornado was heading right for her and our house.
I got her and put her in my bed next to me and snuggled up next to her. I told her that I bet she was very scared by that dream, but that she was safe now and everything is okay. She and I slept together sharing a pillow the rest of the night.
I can only imagine the kind of fear that she must have going on inside her right now. If only there was a way that I could take it all away!
Friday, June 5, 2009
CT Scan done
Emily had her CT scan done today. She didn't start getting nervous until we got in the room and she saw the big machine. Although she has had way more of these things than we can count, it has been a over a year since her last one, and I think she just didn't remember it very well. She took Cheetah with her and the very nice technician let her hold the animal while she was doing the test. Emily started to cry while they were getting her set up and and into position. I kept my hand on her the entire time and I was able to talk to her and calm her down and I even got her to relax enough to smile during the actual test. After it was over, the nice lady gave Emily some stickers and some suckers and off we went to find Ethan and Daddy.
We headed out to to the pre-admissions office to see if Emily's blood work orders had ever arrived yet so we could get that done while we were there. They did not arrive yet and so that will just have to happen on the morning of surgery.
We walked through the maze of the hospital to head toward the gift shop so Ethan and Emily could get the items they had picked out earlier in the week. I am always amazed at how long it will take two kids to shop in a store that is no bigger than the size of my kitchen. We had to have spent 30 minutes in that store and neither of them ended up getting the items they had originally set out to get. :)
It has been a long day, and I'm exhausted and am ready for bed. Rob leaves early tomorrow morning for his Drill weekend with the Army Reserves and I plan to just have a quiet weekend spent with the kids. I'm going to take Emily to the store tomorrow and get her a cute pair of Hannah Montana socks for her to wear with her hospital gown and then the rest of the day will probably be spent at home playing board games and watching some movies together. On Sunday we will just go to church and Sunday School and then I'm not sure yet what we'll do. I know that these are the times when I really just feel like staying at home and being together. Monday will be here before we know it.
Thursday, June 4, 2009
Trying to prepare
We are trying to prepare and get things ready for Monday. I took the kids to Blockbuster and let them each pick out new movies to rent. We'll take the portable DVD player with us for Emily and Ethan can have one to keep with him at Nana and Papa's house. I also took Emily to get her hair cut today. Her hair is just now grown out from her last surgery where they had to shave her head and I really needed to take her in and get her hair trimmed and evened out before Monday. I know they will be shaving more of her hair off, but she gets so sensitive on her head after each surgery and I didn't know how long it would be before she would let Ms. Lana touch her hair. It makes me so sad to think about them having to shave her hair because it is such a big deal to Emily now.
We did do something fun today. I took them to the Kids Park and as soon as we were walking up we hear a couple little voices yelling Emily and Ethan's names. It was a couple little friends from their school that was at the park with their daycare. The kids had a lot of fun seeing their classmates and playing at the park for a while.
Some good news we found out is that Rob will NOT have to leave on Tuesday. He talked to his 1st Sargent today and they will get together and discuss a time that will work out best for Rob on leaving for AIT and that is when he will go. That was a HUGE relief!
I was able to talk to the hospital this afternoon and get Emily's pre-op stuff taken care of. We will have to be at the hospital at 10:30am on Monday morning, but her surgery isn't scheduled until 1:00pm. We will be going to the hospital tomorrow (Friday) for a CT scan of her head and possibly for some blood work, too.
You know, I've been doing really well at holding it all together until tonight. I was laying in bed with Emily while I was tucking her in tonight and I was just listening to her talk and I was thinking about how smart she is, and how amazing she is, and how delicate her little brain is, and it just hit me. She was laying there with her little arm wrapped around me and telling me how much she loved me and I was thinking about how much I just do not want to send her into surgery on Monday. It just kills me that it has to be this way and there isn't anything we can do about it. So here I sit, totally alone because everybody in the house is asleep right now except me, and I'm having my breakdown moment. Tomorrow morning I will wake up and go back to being strong like I'm supposed to be, but for right now I'm as weak as they come.
We did do something fun today. I took them to the Kids Park and as soon as we were walking up we hear a couple little voices yelling Emily and Ethan's names. It was a couple little friends from their school that was at the park with their daycare. The kids had a lot of fun seeing their classmates and playing at the park for a while.
Some good news we found out is that Rob will NOT have to leave on Tuesday. He talked to his 1st Sargent today and they will get together and discuss a time that will work out best for Rob on leaving for AIT and that is when he will go. That was a HUGE relief!
I was able to talk to the hospital this afternoon and get Emily's pre-op stuff taken care of. We will have to be at the hospital at 10:30am on Monday morning, but her surgery isn't scheduled until 1:00pm. We will be going to the hospital tomorrow (Friday) for a CT scan of her head and possibly for some blood work, too.
You know, I've been doing really well at holding it all together until tonight. I was laying in bed with Emily while I was tucking her in tonight and I was just listening to her talk and I was thinking about how smart she is, and how amazing she is, and how delicate her little brain is, and it just hit me. She was laying there with her little arm wrapped around me and telling me how much she loved me and I was thinking about how much I just do not want to send her into surgery on Monday. It just kills me that it has to be this way and there isn't anything we can do about it. So here I sit, totally alone because everybody in the house is asleep right now except me, and I'm having my breakdown moment. Tomorrow morning I will wake up and go back to being strong like I'm supposed to be, but for right now I'm as weak as they come.
Wednesday, June 3, 2009
A trip down memory lane
I'm not sure why we did it, but the kids and I sat and looked at old photos and old videos of them when they were little. They were between 2 1/2 and 3 years old at the time and we had the best time looking through them. In some of them, we laughed until we cried. The sweet little voices they had were just too cute for words and Emily was just as bossy back then to her brother as she is now. :)
I was talking to Ethan today about if he wants to go to Vacation Bible School next week while Emily is in the hospital. I told him that just because she won't be able to go doesn't mean that he can't go. He told me that he doesn't want to be there if she isn't going to be there, too, because he said that he will miss her too much. Isn't that just the sweetest thing ever? And tonight when Emily had fallen and scraped up her ankle, Ethan was so upset about it. I was holding Emily in my lap while she was crying. Ethan had come running in the room to see what happened to her. When he heard her crying so hard and saw that she was hurt, he started crying and he said that he can't stand to see Emily hurt. At that moment she reached her hand out to him and he held his hand out to her and they just cried together holding hands for a second. He isn't usually THIS sentimental and overly emotional, but I think he is right now because of her surgery coming up. He is having a harder time with it than he lets on. He even asked me today when he is going to get to come see her in the hospital. I reassured him that his Nana and Papa would bring him up there.
One thing did happen today that wasn't so good. Or at least it is potentially not going to be good. You see, for Rob's Army Reserve training, he has to leave for 8 weeks this summer to go to AIT. We knew this would be the case, we have just never been told a date as to when he would be leaving. Rob has his first Drill Weekend this weekend and we hoped to get all of the rest of the in-processing done then and find out the information we needed to find out about AIT then. Heck, he doesn't even have his uniforms yet. Even though he will be getting all of the information this weekend, Rob and I talked about it and thought it would be wise to try and call them now if possible and find out what we can about dates for AIT because it would just be nice to know since we are having to schedule our daughter's surgery. When he was on the phone with them today, the person he was talking to said, "It looks like you are leaving on Tuesday." WHAT?????? Rob said that there is no way that is possible. He told them that his daughter is having brain surgery on Monday and it is impossible for him to leave on Tuesday. Plus, when were they planning on notifying him???? He is having to be gone for 8 weeks. There are things he has to do in our personal life as well as in his work life to prepare for this. He can't just leave for 8 weeks with no notice. The person he was talking to said that all she can do is transfer him to the 1st Sargent and let him talk to him and explain the situation. Rob never did get to talk to him and just had to leave a message. So as of right now I have no idea what is going to happen. My daughter is having surgery on Monday and will my husband have to leave on Tuesday for 8 weeks????? I am praying that the information Rob was given today on the phone was a mistake.
I was talking to Ethan today about if he wants to go to Vacation Bible School next week while Emily is in the hospital. I told him that just because she won't be able to go doesn't mean that he can't go. He told me that he doesn't want to be there if she isn't going to be there, too, because he said that he will miss her too much. Isn't that just the sweetest thing ever? And tonight when Emily had fallen and scraped up her ankle, Ethan was so upset about it. I was holding Emily in my lap while she was crying. Ethan had come running in the room to see what happened to her. When he heard her crying so hard and saw that she was hurt, he started crying and he said that he can't stand to see Emily hurt. At that moment she reached her hand out to him and he held his hand out to her and they just cried together holding hands for a second. He isn't usually THIS sentimental and overly emotional, but I think he is right now because of her surgery coming up. He is having a harder time with it than he lets on. He even asked me today when he is going to get to come see her in the hospital. I reassured him that his Nana and Papa would bring him up there.
One thing did happen today that wasn't so good. Or at least it is potentially not going to be good. You see, for Rob's Army Reserve training, he has to leave for 8 weeks this summer to go to AIT. We knew this would be the case, we have just never been told a date as to when he would be leaving. Rob has his first Drill Weekend this weekend and we hoped to get all of the rest of the in-processing done then and find out the information we needed to find out about AIT then. Heck, he doesn't even have his uniforms yet. Even though he will be getting all of the information this weekend, Rob and I talked about it and thought it would be wise to try and call them now if possible and find out what we can about dates for AIT because it would just be nice to know since we are having to schedule our daughter's surgery. When he was on the phone with them today, the person he was talking to said, "It looks like you are leaving on Tuesday." WHAT?????? Rob said that there is no way that is possible. He told them that his daughter is having brain surgery on Monday and it is impossible for him to leave on Tuesday. Plus, when were they planning on notifying him???? He is having to be gone for 8 weeks. There are things he has to do in our personal life as well as in his work life to prepare for this. He can't just leave for 8 weeks with no notice. The person he was talking to said that all she can do is transfer him to the 1st Sargent and let him talk to him and explain the situation. Rob never did get to talk to him and just had to leave a message. So as of right now I have no idea what is going to happen. My daughter is having surgery on Monday and will my husband have to leave on Tuesday for 8 weeks????? I am praying that the information Rob was given today on the phone was a mistake.
Surgery is scheduled
Emily's surgery is scheduled for Monday, June 8. She will be the second surgery that day so it should be done early. I should be getting a call from the pre-op department tomorrow afternoon and I'll have all of the details then. Emily will have to have a CT scan first and we'll probably go over this weekend to get that done. The CT scan will just help give the doctor a current "map" of Emily's brain to help guide her during surgery.
Right now it is a difficult time for us. We are walking around in a fog. It is the feeling like the world is spinning uncontrollably around us while we are just standing still. Please keep our family in your prayers.
Right now it is a difficult time for us. We are walking around in a fog. It is the feeling like the world is spinning uncontrollably around us while we are just standing still. Please keep our family in your prayers.
Tuesday, June 2, 2009
Brain Surgery #5
Emily needs another brain surgery. Yep, our summer officially sucks! We had our appointment with the neurosurgeon this morning. I was so proud of Emily. She did such an amazing job of talking to the doctor and explaining what happens when she gets her headache episodes. She told about how it feels worse when she stands up and that she has to lay down to make it better. She talked about how it hurts on both sides of her head. And the doctor even commented on how impressed she was with Emily when she was doing her neurological checks on her and how perfectly Emily was able to follow all of the directions she had to during the exam. The doctor has always been impressed with how grown up Emily is.
Dr. Canady was going to order a CT scan for her, but then decided against it because of the fact that Emily has slit ventricles. A CT scan would not show that the ventricles are enlarged since they are slit. She suggested to me that we go ahead and tap the shunt in the office today. I agreed that it needed to be done, though I knew that Emily would not be happy with it. The doctor and her nurse came in with the supplies and I held Emily in my lap facing me. The doctor spread her hair apart and found the bulb of the shunt and then rubbed iodine on it. She took a butterfly needle and inserted it into the shunt and then tried to withdraw some of the CSF fluid out of the shunt. Not a single drop of fluid came out. This indicated that the shunt is blocked and that a revision is necessary. Emily was crying, of course, because she was upset by the poke of the needle, and scared to have another brain surgery. Because I didn't have any place else for Ethan to go, he just had to stay in the room with us and watch the procedure. (I think the procedure hurt him as much as it did Emily.)
As we were leaving the office, she was quite upset and I had to stop in the hall and reassure her that everything was going to be okay. I told her that the important thing was that her headaches were going to go away after her surgery and that is what mattered right now. As we got to the ground floor of the hospital, we did our usual thing that we ALWAYS do and we strolled through the gift shop. Emily has already picked out her little stuffed animal that she wants when she has surgery and that will be what Ethan gets for her. After that, we walked over to get some ice cream. Emily seemed to be in a much better mood by this point and was even laughing and joking around with Ethan. It wasn't until the car ride home that things changed again and she started crying. She realized that her hair was going to have to be shaved again and this really upset her. Her hair has JUST NOW grown out enough from the last surgery to where it is even and almost all one length. I told her that they aren't going to have to shave off as much as they did last time because she is only having a shunt revision this time. It didn't matter what I said, nothing is going to change the fact that some of her hair is going to have to be shaved off. She was still upset. And there just wasn't anything I could do to make it better for her either.
But several hours have passed now. She is okay. She and Ethan have been playing and you would never even know she has a problem. As far as when we are going to do it, I am going to try and get it scheduled for Monday of next week if that day is available.
Now, here is the Murphy's Law part of this whole thing. We all know that Rob re-enlisted into the Army because of the medical needs of our kids. More importantly, because of the medical insurance we needed from the military. Well, ironically, our "new" insurance with the military won't go into effect until July 1st at the earliest. So, this means that Ethan's recent hospital stay AND Emily's brain surgery will all be filed on our current BCBS insurance, which all has a nice set of copays and deductibles that go along with it. So, we are only a few weeks away from a really cheap insurance, but I can't make my child suffer for a few weeks to save a few dollars. These really are the types of things that just seem to happen to us. And you just have to laugh about them because you can't cry. :) And I almost have Emily's last brain surgery paid off. Ha-ha!
I'll update again as soon as I have a confirmed date for the surgery.
Dr. Canady was going to order a CT scan for her, but then decided against it because of the fact that Emily has slit ventricles. A CT scan would not show that the ventricles are enlarged since they are slit. She suggested to me that we go ahead and tap the shunt in the office today. I agreed that it needed to be done, though I knew that Emily would not be happy with it. The doctor and her nurse came in with the supplies and I held Emily in my lap facing me. The doctor spread her hair apart and found the bulb of the shunt and then rubbed iodine on it. She took a butterfly needle and inserted it into the shunt and then tried to withdraw some of the CSF fluid out of the shunt. Not a single drop of fluid came out. This indicated that the shunt is blocked and that a revision is necessary. Emily was crying, of course, because she was upset by the poke of the needle, and scared to have another brain surgery. Because I didn't have any place else for Ethan to go, he just had to stay in the room with us and watch the procedure. (I think the procedure hurt him as much as it did Emily.)
As we were leaving the office, she was quite upset and I had to stop in the hall and reassure her that everything was going to be okay. I told her that the important thing was that her headaches were going to go away after her surgery and that is what mattered right now. As we got to the ground floor of the hospital, we did our usual thing that we ALWAYS do and we strolled through the gift shop. Emily has already picked out her little stuffed animal that she wants when she has surgery and that will be what Ethan gets for her. After that, we walked over to get some ice cream. Emily seemed to be in a much better mood by this point and was even laughing and joking around with Ethan. It wasn't until the car ride home that things changed again and she started crying. She realized that her hair was going to have to be shaved again and this really upset her. Her hair has JUST NOW grown out enough from the last surgery to where it is even and almost all one length. I told her that they aren't going to have to shave off as much as they did last time because she is only having a shunt revision this time. It didn't matter what I said, nothing is going to change the fact that some of her hair is going to have to be shaved off. She was still upset. And there just wasn't anything I could do to make it better for her either.
But several hours have passed now. She is okay. She and Ethan have been playing and you would never even know she has a problem. As far as when we are going to do it, I am going to try and get it scheduled for Monday of next week if that day is available.
Now, here is the Murphy's Law part of this whole thing. We all know that Rob re-enlisted into the Army because of the medical needs of our kids. More importantly, because of the medical insurance we needed from the military. Well, ironically, our "new" insurance with the military won't go into effect until July 1st at the earliest. So, this means that Ethan's recent hospital stay AND Emily's brain surgery will all be filed on our current BCBS insurance, which all has a nice set of copays and deductibles that go along with it. So, we are only a few weeks away from a really cheap insurance, but I can't make my child suffer for a few weeks to save a few dollars. These really are the types of things that just seem to happen to us. And you just have to laugh about them because you can't cry. :) And I almost have Emily's last brain surgery paid off. Ha-ha!
I'll update again as soon as I have a confirmed date for the surgery.
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