I can actually say that there isn't anything exciting going on right now. My weekend was spent with me getting over a horrific migraine, but for right now, it is a normal, boring, summer day. We are heading to Grandma's house today for our usual "Grandma duty" and that is about it. It is the way it is supposed to be. Now, if we can only get the job hunt thing going better then all would be perfect. :)
Rob and I are still submitting resumes, but neither of us have heard anything back yet from anybody. It can get frustrating, but we aren't giving up. We have decided to use this time off to our advantage and take a short trip to Texas to go visit Rob's family. Once the kids start school it will be hard for us to go, plus it will be hard for Rob or me to take off from work once we start a new job, so we have decided to go now. We have a few appointments coming up in the next week or so, and then we will go.
Ethan has an appointment to see the pulmonologist coming up next week, and then I also have to see about setting up the kids' 504 plans for the new school year. I also have to find out from our pediatrician why the appointment was never made for us to see the allergist like we were supposed to see. That kind of got lost in the mix because of Emily's surgeries and the other stuff going on, but now we have that to deal with, too. So, somewhere in all of this, we will take a trip to Texas, continue our daily job hunts, and also continue with my daily care of Grandma. Awwwww...summer vacation!!! :)
Tuesday, June 30, 2009
Saturday, June 27, 2009
Waterville...here we come!
Our lives are getting back to a new kind of normal. Emily is feeling fantastic. With her hair down, you can't even tell that she had brain surgery. She is running around and playing and so full of life. The kids have both been reading their library books each week and taking AR tests at school and Ethan's reading level has just jumped leaps and bounds above where he was when he finished Kindergarten just a little over a month ago. It is amazing. He still gets frustrated at times when he is reading, but I remind him of Mrs. McFarland's yoga techniques (Ha-ha!) and he takes his deep breath and moves on. Ethan is just a little more protective of Emily right now after her surgery and I guess that is to be expected. I am always hearing him telling her to watch out when they are outside doing something, and he repeatedly checks on her to make sure that she is okay. Yesterday evening he was pushing her around the house in one of our laundry baskets in a game they had made up. Well, I guess he had turned a corner too fast and the basket started to turn over. Emily would have been just fine. They were on the carpet and there was nothing around them. Ethan, however, not only tried to stop the basket from turning over, he also cradled Emily's head on the way down in his hands and said, "Oh, Emily! Your head!" It was just so touching to see his sweetness and love for her.
And although they are sweet with each other, they have become little conniving brats with their mommy. Rob wakes up pretty early and immediately starts his job hunting on the computer. I am typically the last one awake in the house (thanks to my late nights on the computer). Well, the other morning, I had two kids come in at different times and wake me up and ask me for a piece of gum. Shortly after this I could hear them talking in the kitchen. This is how the conversation went about their gum:
Ethan: Who did you ask?
Emily: The one still in bed.
Ethan: Yeah, me too!
Ethan and Emily together: [laughing]
You see, the little darlings should have asked their daddy if they could have gum, but they knew he would have said no because they hadn't had breakfast and they hadn't brushed their teeth. So they come wake me up instead because they know that I will say anything to get them the heck out of my room and shut them up before I've had coffee. But there is one very important thing I have to point out here....AT LEAST THEY ASKED!!!! Ethan and Emily are both such rule followers that they never would have just taken the piece of gum without asking. So, they had to figure out a way to ask to make sure that they got the answer they wanted. I have to give them some credit for that. :)
I have to talk about Ethan's new obsession. Star Wars! He has been playing his Lego Star Wars game on his Nintendo DS and that is about the only game he plays. I noticed that he would talk about the characters from his game, but he really had not clue who the characters were or what it was about. I decided that he would enjoy his game more if he understood it. Plus, I thought since he loved the game so much, he would probably really love the movie. So, I went to Blockbuster and we rented the original Star Wars. He and sat and watched the movie together. He was hooked immediately!!!! Now, it is all he talks about. And I think he has now watched that movie about five times and we have only had it a few days. I told him that we will go rent The Empire Strikes Back next week so he can watch that one. He is so excited. He told me he wants so be Luke Skywalker for Halloween and for Christmas he wants a light saber, some of the Star Wars vehicle toys, and a Darth Vader costume. Now I'm scared and wondering if they even make this stuff anymore or will Ebay be my new best friend this Christmas?
This week we lost two legends, Farrah Fawcett and Michael Jackson. Of course there has been lots of news coverage. Emily was watching part of the coverage about MJ and she turned to me and asked me why he looked different as a child compared to when he was an adult. She said that his whole entire face looks different. I just explained to her that he wasn't happy with the way he looked and that he had surgery to change it. She said, "Well what was wrong with him to begin with? Why would he want to change it?" And then she wanted to know if he was happy with the changes. I told her that he probably wasn't and that was the reason why he kept having surgery. Then we talked about when it was okay to have surgery on your face like when people were injured or had deformities, etc. We talked about how sad it was for people to not be happy with how they looked. Her final response was, "Well, nobody is perfect!" She is just so wise for her age.
The job hunt thing isn't going so well. Rob and I have both put in lots of applications/resumes, but neither of us have heard anything yet. Of course, it has only been a week. It just seems so much longer than that. I can tell that the longer this goes on, the more discouraging this can get. We are also trying to not let it put a strain on our relationship. We were just coming out of a very high stress (and high strain) situation with two back to back brain surgeries and to have this happen, well, it can do a whopper on a marriage. Luckily, we are strong and we are making sure to work through this together.
We decided that we needed a day of fun today. We are taking the kids to Waterville this afternoon!!!!! Thank goodness we bought those season passes before Rob got laid off. That will give the kids something fun to do all summer long. And now that Emily can get her head wet again since her stitches are out, we should REALLY be able to enjoy it and also not have to worry about her having headache episodes while there either. Today is a day to forget about our troubles and just escape!
And although they are sweet with each other, they have become little conniving brats with their mommy. Rob wakes up pretty early and immediately starts his job hunting on the computer. I am typically the last one awake in the house (thanks to my late nights on the computer). Well, the other morning, I had two kids come in at different times and wake me up and ask me for a piece of gum. Shortly after this I could hear them talking in the kitchen. This is how the conversation went about their gum:
Ethan: Who did you ask?
Emily: The one still in bed.
Ethan: Yeah, me too!
Ethan and Emily together: [laughing]
You see, the little darlings should have asked their daddy if they could have gum, but they knew he would have said no because they hadn't had breakfast and they hadn't brushed their teeth. So they come wake me up instead because they know that I will say anything to get them the heck out of my room and shut them up before I've had coffee. But there is one very important thing I have to point out here....AT LEAST THEY ASKED!!!! Ethan and Emily are both such rule followers that they never would have just taken the piece of gum without asking. So, they had to figure out a way to ask to make sure that they got the answer they wanted. I have to give them some credit for that. :)
I have to talk about Ethan's new obsession. Star Wars! He has been playing his Lego Star Wars game on his Nintendo DS and that is about the only game he plays. I noticed that he would talk about the characters from his game, but he really had not clue who the characters were or what it was about. I decided that he would enjoy his game more if he understood it. Plus, I thought since he loved the game so much, he would probably really love the movie. So, I went to Blockbuster and we rented the original Star Wars. He and sat and watched the movie together. He was hooked immediately!!!! Now, it is all he talks about. And I think he has now watched that movie about five times and we have only had it a few days. I told him that we will go rent The Empire Strikes Back next week so he can watch that one. He is so excited. He told me he wants so be Luke Skywalker for Halloween and for Christmas he wants a light saber, some of the Star Wars vehicle toys, and a Darth Vader costume. Now I'm scared and wondering if they even make this stuff anymore or will Ebay be my new best friend this Christmas?
This week we lost two legends, Farrah Fawcett and Michael Jackson. Of course there has been lots of news coverage. Emily was watching part of the coverage about MJ and she turned to me and asked me why he looked different as a child compared to when he was an adult. She said that his whole entire face looks different. I just explained to her that he wasn't happy with the way he looked and that he had surgery to change it. She said, "Well what was wrong with him to begin with? Why would he want to change it?" And then she wanted to know if he was happy with the changes. I told her that he probably wasn't and that was the reason why he kept having surgery. Then we talked about when it was okay to have surgery on your face like when people were injured or had deformities, etc. We talked about how sad it was for people to not be happy with how they looked. Her final response was, "Well, nobody is perfect!" She is just so wise for her age.
The job hunt thing isn't going so well. Rob and I have both put in lots of applications/resumes, but neither of us have heard anything yet. Of course, it has only been a week. It just seems so much longer than that. I can tell that the longer this goes on, the more discouraging this can get. We are also trying to not let it put a strain on our relationship. We were just coming out of a very high stress (and high strain) situation with two back to back brain surgeries and to have this happen, well, it can do a whopper on a marriage. Luckily, we are strong and we are making sure to work through this together.
We decided that we needed a day of fun today. We are taking the kids to Waterville this afternoon!!!!! Thank goodness we bought those season passes before Rob got laid off. That will give the kids something fun to do all summer long. And now that Emily can get her head wet again since her stitches are out, we should REALLY be able to enjoy it and also not have to worry about her having headache episodes while there either. Today is a day to forget about our troubles and just escape!
Tuesday, June 23, 2009
They are out!!!!!
The stitches are out!!!! And I am quite certain that everybody across this country heard those screams around 10:15am this morning. Phew! At least it is over now. Poor girl! I know it was very traumatic for her. On the car ride over there she was quietly sitting in the back seat playing her Nintendo DS. Every once in a while, she would say something like, "Mommy, I'm a little bit scared, but also a little bit ready to get them out." She was just so sweet. I could tell how nervous she was, and she had every right to be nervous after the horrible experience she had last year with it, but she did very well until they called her name to go back. That was when she started crying. And there was a waiting room filled with people, too. Rob stayed in the waiting room with Ethan and just me and Emily went back. Dr. Canady came in first to examine her and she was very pleased with how she is doing and then she left so the nurse could do the dirty work. Emily sat on my lap facing me and I helped hold her steady while the nurse pulled and clipped the stitches. Emily screamed in my ear the entire time. The knots on the ends were a little embedded and the nurse had to get the doctor to come help pull them out to clip them. In all, it actually went pretty well (again, compared to last year) and then we were on our way.
We headed downstairs and the kids wanted to throw some coins in the fountain and make a few wishes. Then we ate lunch in the cafeteria using our meal tickets that we had. The kids were cracking us up because they were saying it was the best food they had ever eaten. Wow, their standards aren't high, are they?
Starting tomorrow, Emily will get to WASH HER HAIR!!!!!!! This is huge! We also got to take her hair down out of the ponytail for the first time tonight since her surgery. Other than the few times we have improvised when we cleaned the blood from surgery out of her ponytail by dipping it a bowl of water, and when we used a ton of detangle spray to get the knots out of her hair when it was matted up, her hair hasn't been truly clean since the night before she had the first surgery. When she went to bed tonight, we were able to keep her hair down since she doesn't have stitches in anymore. I was rubbing her head and I told her that it felt so good to be able to rub her head. I asked her if it felt good to have her hair down. She said, "I feel totally normal...like I didn't even have brain surgery at all." I thought that was just so sweet and so cute. She grabbed my arm and pulled me down to give her a great big bear hug goodnight and then told me that she loved me.
And I have a funny story to share. Emily often wants something to drink at night. And because she doesn't want to spill her drink, she has always used a sippy cup at night because those are the only totally spill proof cups we have. Well, tonight when she asked me if I would bring her some water, I suggested that she just go get a drink and get back in bed. She then told me to just bring her a sippy. I said, "You know, Emily. I wonder when you are going to outgrow those toddler sippy cups?" Her reply to me was, "I wonder why they don't make Hannah Montana sippy cups!" I laughed then and told her that it was because 2 year olds don't watch Hannah Montana and that sippy cups were really meant for 2 year olds. She told me that she didn't care because it wasn't like she was using it out places. She was only using it at night so her water didn't spill AND the cups keep her water cold. The girl does have some logic. How can I argue with her on those points. And let's face it. Sippy cups are way cheaper than those insulated spill proof cups they make for adults. So here is the even funnier part to the story. Immediately when I left her room after I dropped off her SIPPY CUP of ice water, I went to kiss Ethan goodnight. I told him the story about the sippy cup fiasco. In true Ethan nature to take up and care for his sister, he decided that she COULD have a Hannah Montana sippy cup. Tomorrow he is going to get her some stickers and help her put HM stickers on her sippy so she can have it like she wants it. I didn't have the heart to tell him that as soon as I put it in the dishwasher, those stickers will start to peel right off.
We headed downstairs and the kids wanted to throw some coins in the fountain and make a few wishes. Then we ate lunch in the cafeteria using our meal tickets that we had. The kids were cracking us up because they were saying it was the best food they had ever eaten. Wow, their standards aren't high, are they?
Starting tomorrow, Emily will get to WASH HER HAIR!!!!!!! This is huge! We also got to take her hair down out of the ponytail for the first time tonight since her surgery. Other than the few times we have improvised when we cleaned the blood from surgery out of her ponytail by dipping it a bowl of water, and when we used a ton of detangle spray to get the knots out of her hair when it was matted up, her hair hasn't been truly clean since the night before she had the first surgery. When she went to bed tonight, we were able to keep her hair down since she doesn't have stitches in anymore. I was rubbing her head and I told her that it felt so good to be able to rub her head. I asked her if it felt good to have her hair down. She said, "I feel totally normal...like I didn't even have brain surgery at all." I thought that was just so sweet and so cute. She grabbed my arm and pulled me down to give her a great big bear hug goodnight and then told me that she loved me.
And I have a funny story to share. Emily often wants something to drink at night. And because she doesn't want to spill her drink, she has always used a sippy cup at night because those are the only totally spill proof cups we have. Well, tonight when she asked me if I would bring her some water, I suggested that she just go get a drink and get back in bed. She then told me to just bring her a sippy. I said, "You know, Emily. I wonder when you are going to outgrow those toddler sippy cups?" Her reply to me was, "I wonder why they don't make Hannah Montana sippy cups!" I laughed then and told her that it was because 2 year olds don't watch Hannah Montana and that sippy cups were really meant for 2 year olds. She told me that she didn't care because it wasn't like she was using it out places. She was only using it at night so her water didn't spill AND the cups keep her water cold. The girl does have some logic. How can I argue with her on those points. And let's face it. Sippy cups are way cheaper than those insulated spill proof cups they make for adults. So here is the even funnier part to the story. Immediately when I left her room after I dropped off her SIPPY CUP of ice water, I went to kiss Ethan goodnight. I told him the story about the sippy cup fiasco. In true Ethan nature to take up and care for his sister, he decided that she COULD have a Hannah Montana sippy cup. Tomorrow he is going to get her some stickers and help her put HM stickers on her sippy so she can have it like she wants it. I didn't have the heart to tell him that as soon as I put it in the dishwasher, those stickers will start to peel right off.
Stitch Removal
We are leaving in a few minutes to get Emily's stitches out. I am looking at this as one huge accomplishment to make it this far without needing another brain surgery. :) Emily is NOT looking forward to this procedure and neither am I, quite frankly. I am sure that everybody in a 100 mile radius will hear her screams while I hold her down for them to do this. And I have decided that there should be a law against the parent holding down the child for a procedure like this. It is inhumane!!!! I did promise Emily that we will go out for ice cream afterward. Heck, we might even eat a free nasty hospital lunch in the cafeteria since I still have so many meal tickets from all of her hospital stays. I sure hate for all of those things to go to waste. Ha-ha!
The job hunt is going okay. There just isn't a whole lot out there. Rob and I have our resumes together and we are sending them out to a few places. I did spend all morning on the phone yesterday with the Social Security office. I am in the process of trying to re-instate the kids' disability. Both of them are considered "disabled" due to their medical conditions and it is just a process of getting it all back in force.
I'll post another update later once Emily's stitches are out.
The job hunt is going okay. There just isn't a whole lot out there. Rob and I have our resumes together and we are sending them out to a few places. I did spend all morning on the phone yesterday with the Social Security office. I am in the process of trying to re-instate the kids' disability. Both of them are considered "disabled" due to their medical conditions and it is just a process of getting it all back in force.
I'll post another update later once Emily's stitches are out.
Saturday, June 20, 2009
Something Positive!
I have something very positive to report...Our military insurance has officially been applied for and should be effective July 1st!!!!!!! This is a very huge weight lifted off of our shoulders right now to know that our children will continue to have health care!
You know, we've had a few days to process this whole lay off situation. And I would be lying if I said that there weren't times that it didn't scare me when I really sat down and thought about it, but I also have to say that I really feel like we were prepared for it to happen. I am one of those types of people that believe that things happen for a reason, good and bad. There have been events that have taken place in our lives recently that have prepared us for this day. Some of those preparations were of our own doing, and some were forced on us, but all of them helped us get to the point we are right now.
We kind of saw the writing on the wall (so to speak) and knew that lay-offs would be coming at Rob's job. We just didn't know when. So, several months ago we started talking about our number one concern...health insurance. That is when Rob came up with the idea of joining the Army Reserves. We seriously talked through the options and he really wanted to do it for more reasons than just the insurance. That was HUGE step number one. We also decided to sell the boat and eliminate that debt and put back some emergency money in the bank. These little steps, combined with learning to live on a smaller budget when Rob's hours were cut back, really set us up in a good situation, probably more than some of Rob's poor co-workers who were also laid off.
As strange as this is probably going to sound, I actually feel at peace regarding it all right now. I know that we have done everything that we could have possibly done to protect ourselves. Rob and I are both looking for full-time work, and I have faith that it will all work out okay.
You know, we've had a few days to process this whole lay off situation. And I would be lying if I said that there weren't times that it didn't scare me when I really sat down and thought about it, but I also have to say that I really feel like we were prepared for it to happen. I am one of those types of people that believe that things happen for a reason, good and bad. There have been events that have taken place in our lives recently that have prepared us for this day. Some of those preparations were of our own doing, and some were forced on us, but all of them helped us get to the point we are right now.
We kind of saw the writing on the wall (so to speak) and knew that lay-offs would be coming at Rob's job. We just didn't know when. So, several months ago we started talking about our number one concern...health insurance. That is when Rob came up with the idea of joining the Army Reserves. We seriously talked through the options and he really wanted to do it for more reasons than just the insurance. That was HUGE step number one. We also decided to sell the boat and eliminate that debt and put back some emergency money in the bank. These little steps, combined with learning to live on a smaller budget when Rob's hours were cut back, really set us up in a good situation, probably more than some of Rob's poor co-workers who were also laid off.
As strange as this is probably going to sound, I actually feel at peace regarding it all right now. I know that we have done everything that we could have possibly done to protect ourselves. Rob and I are both looking for full-time work, and I have faith that it will all work out okay.
Thursday, June 18, 2009
Well, that was short!
The relaxation didn't last long!!!! Although we had the time of our lives at The Grand, and I owe it all to my cousin Tracy and her husband Ray for making sure that we enjoyed ourselves after the week we had with Emily, our lives once again came crashing down again with the news we received today. Rob was laid off from work, effective immediately.
So just from last week to this week...we had to watch our daughter endure two brain surgeries, and now Rob is unemployed.
The really sad thing to see was when I had to inform the kids. There is just no way to avoid it and I sugar coated it and tried to put a positive spin on it as much as I could. Despite that, Ethan just stood there and started tearing up. I have to agree with Ethan, though. I have done my share of tearing up, too.
So just from last week to this week...we had to watch our daughter endure two brain surgeries, and now Rob is unemployed.
The really sad thing to see was when I had to inform the kids. There is just no way to avoid it and I sugar coated it and tried to put a positive spin on it as much as I could. Despite that, Ethan just stood there and started tearing up. I have to agree with Ethan, though. I have done my share of tearing up, too.
Wednesday, June 17, 2009
Total Relaxation!
We are at The Grand Hotel! We are spending two glorious days at The Grand with my cousin, Tracy, and her children, and with my sister and my nephew, Chase. We walk out on our balcony and have a beautiful view of the bay and we can hear the water as it laps up against the boats. We have adjoining rooms and so the kids have one room and then we have the adults in the other. Ha-ha! It is perfect! Now, if we could only figure out a way to keep them on their side and not have them coming through the door every three seconds.
Our plans for the day are to do nothing but to sit by the pool and to eat! It is the perfect life.
The only sad part of this little venture is that Emily isn't allowed to go swimming because of her incision. That makes it tough. I have done the best I can to make it fun for her. They have an awesome pool here with a shallow end. I have put a hat on her so she doesn't get sunburned where her head is shaved and I take her in the water and carry her. It isn't an ideal situation and she would LOVE to swim by herself, but we just can't let her get her head wet. She is still having fun and we are making a bad situation work.
Sunday, June 14, 2009
Always Trust Your Gut Feeling
First of all, I just have to say that Emily is doing WONDERFUL!!!!!!! She hasn't slowed down one time since we came home from the hospital. This is so much different from last Monday and it is the way it should have been all along. Ethan and Emily's cousins are in town from Colorado and they are having the time of their lives. We let the boys (this also includes their cousin Chase) have a sleepover over at Nana and Papa's house, and the girls had a sleepover at our house. I have to say that we definitely got the better end of the deal on this one! Ha-ha! Emily and Ashley are like the best of friends and they played in the playhouse, played outside, stayed up playing a Hannah Montana CD board game for a while last night, and then slept in sleeping bags on the floor while watching tv. It was everything a sleepover should have been. I'm sure the boys pretty much just played video games all evening last night. :)
Now I have to talk a little bit about our week and about our feelings on what happened this week. I know that I blogged about how I talked to our pediatrician earlier in the week when I had concerns about Emily, but I didn't go into details about all of the conversation. You see, from the moment Emily came home last Monday, there was a gut feeling that something wasn't quite right. Things were just different. I was trying not to be too neurotic, and I was sometimes making excuses for things, but I just knew. I couldn't compare this surgery to last year's surgery because she didn't have just a shunt revision last year. She had a brain decompression and her recovery for that was a harder one anyway. The only thing I could compare it to was her shunt revision when she was 2 1/2 years old. When I compared it to then, there was definitely something that wasn't right. So, when I spoke with the pediatrician, I told him about Emily's symptoms and about her not eating and drinking. And the biggest thing I talked to him about was that I was worried that she was having some kind of pressure building up on her brain and I asked him if it was possible if she could have a small amount of hemorrhaging going on. I didn't think at all that the shunt would be clogged again, and I was thinking that maybe she was hemorrhaging or something. He reassured me that if she was having a brain bleed, we would know it! And like I said, I just didn't think the new catheter would be clogged again so soon so I didn't really think specifically about that. Then I started asking about infection then because she kept complaining about her head hurting, but Emily was thinking it was because of the incision site itself. The incision didn't look infected and she wasn't running a fever, though. The pediatrician and I spoke for a very long time about all of this and the one thing he asked me was if she was getting up to play. I said she was. And heck, we all saw her at VBS. She did play. But then again, after short little bouts of playing, she also had to lay down to rest, too. Again with the excuses. She just had brain surgery. Wouldn't we all want to rest after surgery? The not eating and drinking issue was really one of our biggest concerns (and a big red flag). And as I said in my earlier post, regarding the eating and drinking, the doctor told me to force the liquids so she didn't get dehydrated and to not worry about the food. If didn't improve by Friday, I should take her in to the ER or neurosurgeon and get things checked out. Well, on Thursday, she suddenly started eating and drinking and we were very relieved. We thought she was finally doing okay. And you can imagine our surprise on Friday morning when she woke up so very sick.
The moral of this story is that I should have trusted my gut feeling all along. I knew that she wasn't right from the beginning. This time is so different and it is how she is supposed to act. Yesterday morning before I left to head to the ER, I called the pediatrician's office to let them know what was going on. I spoke to the nurse and told her that we thought Emily's shunt was failing and we were rushing her to the ER in Pensacola and that the neurosurgeon was going to meet us there. There was silence on the phone for a second and then the nurse quietly said to me, "You had a feeling that there was something wrong all along, didn't you?" I replied to her that I did. While we were in the ER, our pediatrician called me on my cell phone to check on Emily, but we still hadn't seen the neurosurgeon. He was very concerned about her and said that it did sound like shunt failure. He wished us well and said that he would be checking in with us again.
What a week this has been. I can't believe that it has ONLY been one week. This one week has taken about ten years off of my life! :)
Now I have to talk a little bit about our week and about our feelings on what happened this week. I know that I blogged about how I talked to our pediatrician earlier in the week when I had concerns about Emily, but I didn't go into details about all of the conversation. You see, from the moment Emily came home last Monday, there was a gut feeling that something wasn't quite right. Things were just different. I was trying not to be too neurotic, and I was sometimes making excuses for things, but I just knew. I couldn't compare this surgery to last year's surgery because she didn't have just a shunt revision last year. She had a brain decompression and her recovery for that was a harder one anyway. The only thing I could compare it to was her shunt revision when she was 2 1/2 years old. When I compared it to then, there was definitely something that wasn't right. So, when I spoke with the pediatrician, I told him about Emily's symptoms and about her not eating and drinking. And the biggest thing I talked to him about was that I was worried that she was having some kind of pressure building up on her brain and I asked him if it was possible if she could have a small amount of hemorrhaging going on. I didn't think at all that the shunt would be clogged again, and I was thinking that maybe she was hemorrhaging or something. He reassured me that if she was having a brain bleed, we would know it! And like I said, I just didn't think the new catheter would be clogged again so soon so I didn't really think specifically about that. Then I started asking about infection then because she kept complaining about her head hurting, but Emily was thinking it was because of the incision site itself. The incision didn't look infected and she wasn't running a fever, though. The pediatrician and I spoke for a very long time about all of this and the one thing he asked me was if she was getting up to play. I said she was. And heck, we all saw her at VBS. She did play. But then again, after short little bouts of playing, she also had to lay down to rest, too. Again with the excuses. She just had brain surgery. Wouldn't we all want to rest after surgery? The not eating and drinking issue was really one of our biggest concerns (and a big red flag). And as I said in my earlier post, regarding the eating and drinking, the doctor told me to force the liquids so she didn't get dehydrated and to not worry about the food. If didn't improve by Friday, I should take her in to the ER or neurosurgeon and get things checked out. Well, on Thursday, she suddenly started eating and drinking and we were very relieved. We thought she was finally doing okay. And you can imagine our surprise on Friday morning when she woke up so very sick.
The moral of this story is that I should have trusted my gut feeling all along. I knew that she wasn't right from the beginning. This time is so different and it is how she is supposed to act. Yesterday morning before I left to head to the ER, I called the pediatrician's office to let them know what was going on. I spoke to the nurse and told her that we thought Emily's shunt was failing and we were rushing her to the ER in Pensacola and that the neurosurgeon was going to meet us there. There was silence on the phone for a second and then the nurse quietly said to me, "You had a feeling that there was something wrong all along, didn't you?" I replied to her that I did. While we were in the ER, our pediatrician called me on my cell phone to check on Emily, but we still hadn't seen the neurosurgeon. He was very concerned about her and said that it did sound like shunt failure. He wished us well and said that he would be checking in with us again.
What a week this has been. I can't believe that it has ONLY been one week. This one week has taken about ten years off of my life! :)
Saturday, June 13, 2009
Heading Home (again)
This is just a quick update to say that we will be leaving the hospital very soon and be heading home. Dr. Canady came in a little while ago and said that Emily can leave. Let's just hope that this one will last this time. We only need to keep the dressing on through tomorrow. If it comes off after that then we can leave it off. She will need to return to the doctor's office a week from Tuesday to have the stitches out.
I did ask about Emily's activity level and if she should be limited. The doctor said that she does not need to be limited on what she does. Well, there are two exceptions...no trampolines (that is a standard with her at all times), and no swimming for two weeks. So that means that Emily will be allowed to run and play and do whatever she feels up to doing. It is really quite amazing to think about. She can be so sick and lethargic and barely responsive in one instant and then almost back to normal the next. The tiniest amount of extra pressure in your brain can really mess things up with your body. And it is scary when it can happen so suddenly, too. Between Ethan's sudden and severe asthma and lung issues and Emily's brain, we pretty much need the hospitals and doctors all on speed dial, don't we? :) Oh wait, I do have them all on speed dial. Ha-ha!
We are just waiting for the nurse to come in with our discharge papers now and for that infamous dressing change and then we are OUT OF HERE! And we have people to see and places to go today. We have been waiting for months for this day to get here! Our cousins from Colorado are coming in town today and Emily can't wait to get home to see them!!! I am so glad that she won't have to stay in the hospital another day.
I did ask about Emily's activity level and if she should be limited. The doctor said that she does not need to be limited on what she does. Well, there are two exceptions...no trampolines (that is a standard with her at all times), and no swimming for two weeks. So that means that Emily will be allowed to run and play and do whatever she feels up to doing. It is really quite amazing to think about. She can be so sick and lethargic and barely responsive in one instant and then almost back to normal the next. The tiniest amount of extra pressure in your brain can really mess things up with your body. And it is scary when it can happen so suddenly, too. Between Ethan's sudden and severe asthma and lung issues and Emily's brain, we pretty much need the hospitals and doctors all on speed dial, don't we? :) Oh wait, I do have them all on speed dial. Ha-ha!
We are just waiting for the nurse to come in with our discharge papers now and for that infamous dressing change and then we are OUT OF HERE! And we have people to see and places to go today. We have been waiting for months for this day to get here! Our cousins from Colorado are coming in town today and Emily can't wait to get home to see them!!! I am so glad that she won't have to stay in the hospital another day.
Friday, June 12, 2009
What a day!
This was one of the worst days of our lives. We got Emily to the hospital this morning and things went from bad to worse. Emily vomited and moaned on the entire way to the hospital. Once we got to the hospital, we had to wait a while because our neurosurgeon was in emergency surgery with another child. She was already expecting us, though, and so she had ordered a CT scan for Emily. We had the scan done and then we had to wait longer. During this time, Emily seemed to just get even worse. She was totally lethargic and barely responsive. She would moan in pain from her head hurting and the only time she she was awake was when she was vomiting. Finally, one of the ER doctors told us that her CT scan did indicate that her ventricles were enlarged compared to her last scans and that the OR was getting ready to come down and pick Emily up for surgery. Dr. Canady would talk to us once we got up there. Well, knowing that Emily's ventricles showed enlargement in a CT scan meant that the pressure in her head was HUGE because she has slit vents and they don't expand. It is no wonder that she was in so much pain and so miserable. By the time we got up to the third floor pre-op area, I was actually ready to send Emily in to surgery. It was either that, or it was like I was watching my child waste away right in front of me. At that point I would have done anything to help her out. I tried talking to her and explaining to her what was being done, but I didn't think she was coherent enough to understand me.
Before Emily was taken into surgery, Dr. Canady came in to talk to us. I asked her what could have gone wrong since Monday. She showed us her scans and showed us the slit ventricles and how delicate the surgery is. She also told us something that I would have liked to have known before now. She said that a child that has slit vents has a higher chance of shunt failure immediately after a revision. She said that if it is going to happen, it will happen within the first two weeks following the revision. So, you can guarantee that we will be on pins and needles for the next couple of weeks. There is nothing to prevent it from happening. It either will or it won't.
When it was time to take her away, Rob and I just kissed her and told her we loved her. She was really out of it, but she cried a little bit and said she was scared, but I don't really know if she knew what was happening. One thing that was good was that she was with the same OR nurses that she had on Monday and they all loved her to pieces and they were taking very good care of her. They were all just heartbroken that she was back. I knew that she was in very good hands.
After we shed our tears, we headed to our usual spot in the waiting room. We saw Ethan there with my mom and dad and Grandma. We gave Ethan some great big hugs and he helped ease our minds for a bit. He was just so happy and full of life and was excited to show us the stuffed dog that he had picked out for Emily in the gift shop.
The surgery only lasted 45 minutes and Dr. Canady came in with a smile on her face. That is always a good sign. It didn't take as long this time because Emily's head was already shaved and they just went through the same incision. The doctor said that she tested the shunt valve and it was working properly, but the catheter was blocked again. It's amazing how quickly things went downhill.
When we were finally able to see Emily in Recovery, she was a sight for sore eyes. She was the old Emily again. Her head was sore because of the incision, but she was talking and doing so well. One of the first things she said to me was that she loved me and she reached for my hand so she could kiss me. After a few minutes she asked me where she was and asked what happened. That just broke my heart! I had to explain to her that her shunt broke again and that she just had it fixed. I told her that she was back in the hospital and that she would be feeling better soon. And one of the first things she asked me was where Ethan was because she wanted to see him. :)
Emily is now in her room on the third floor of the hospital. It has only been 4 hours since her sixth brain surgery and she has already been watching SpongeBob. She has eaten 5 chicken nuggets and a vanilla frosty. And she is now sitting up in bed and playing her Pocket V-Smile. This girl is a real trouper and the bravest girl I know!!!
Before Emily was taken into surgery, Dr. Canady came in to talk to us. I asked her what could have gone wrong since Monday. She showed us her scans and showed us the slit ventricles and how delicate the surgery is. She also told us something that I would have liked to have known before now. She said that a child that has slit vents has a higher chance of shunt failure immediately after a revision. She said that if it is going to happen, it will happen within the first two weeks following the revision. So, you can guarantee that we will be on pins and needles for the next couple of weeks. There is nothing to prevent it from happening. It either will or it won't.
When it was time to take her away, Rob and I just kissed her and told her we loved her. She was really out of it, but she cried a little bit and said she was scared, but I don't really know if she knew what was happening. One thing that was good was that she was with the same OR nurses that she had on Monday and they all loved her to pieces and they were taking very good care of her. They were all just heartbroken that she was back. I knew that she was in very good hands.
After we shed our tears, we headed to our usual spot in the waiting room. We saw Ethan there with my mom and dad and Grandma. We gave Ethan some great big hugs and he helped ease our minds for a bit. He was just so happy and full of life and was excited to show us the stuffed dog that he had picked out for Emily in the gift shop.
The surgery only lasted 45 minutes and Dr. Canady came in with a smile on her face. That is always a good sign. It didn't take as long this time because Emily's head was already shaved and they just went through the same incision. The doctor said that she tested the shunt valve and it was working properly, but the catheter was blocked again. It's amazing how quickly things went downhill.
When we were finally able to see Emily in Recovery, she was a sight for sore eyes. She was the old Emily again. Her head was sore because of the incision, but she was talking and doing so well. One of the first things she said to me was that she loved me and she reached for my hand so she could kiss me. After a few minutes she asked me where she was and asked what happened. That just broke my heart! I had to explain to her that her shunt broke again and that she just had it fixed. I told her that she was back in the hospital and that she would be feeling better soon. And one of the first things she asked me was where Ethan was because she wanted to see him. :)
Emily is now in her room on the third floor of the hospital. It has only been 4 hours since her sixth brain surgery and she has already been watching SpongeBob. She has eaten 5 chicken nuggets and a vanilla frosty. And she is now sitting up in bed and playing her Pocket V-Smile. This girl is a real trouper and the bravest girl I know!!!
We need prayers!!!!!
Something is seriously wrong!!!!!!!! She woke up with a major headache! Emily is vomiting and screaming that the sides of her head feel funny. We are taking her to the hospital!
Wednesday, June 10, 2009
VBS
Today was a pretty good day for Emily overall. She woke up feeling pretty good and said that she wanted to go to VBS. The first thing we did this morning was sit down and work on her hair. I had a long talk with her and I explained to her that we needed to work on getting the mats out of her hair now. The longer we waited to get them out, the worse it would be. I told her that she worked too hard to have them shave less hair off this time and it would be a shame if we had to cut the good hair off because it got too matted up. She looked at me and took a deep breath and said, "OK. Let's do it." Now this just goes to show how darn brave she is and how much gumption she has. So, I gathered my supplies of a hair pick, a brush, a comb, rubber bands, and detangler spray. Emily gently laid her head on a pillow on the floor and I began the tedious job of picking my way through the knots in her hair. Ethan, who can't stand to see or hear his sister in any kind of pain whatsoever, quickly ran off into his bedroom and shut the door. He stayed in there until we were finished. When the knots were all out, I told Emily how proud I was of her for being so brave and letting me do that. She thanked me for getting them out and then hugged me and told me she loved me.
I was very happy to see how much fun the kids had at VBS. Ethan had fun showing Emily around. Emily was EXTREMELY mad at me when I wouldn't let her participate in the outdoor activity they were doing, but she just had to get over it. It was too hot. She hasn't been drinking enough fluids anyway and is near dehydration. Plus, they were using water guns, and we couldn't risk getting her dressing over her incision wet. She did end up getting over it and it was okay.
By the time we left VBS, Emily was starting to feel a little nauseous. It was time to go lay down and rest for a bit. We went to Grandma's house and she rested over there while I did some stuff for Grandma. Later we headed down to Gulf Shores to go see Aunt Debbie and Chase for a few minutes before she had to take Chase back to his Dad's.
I'll admit that I have been a little concerned about Emily's incision on her head. She is extra sensitive with this one, moreso than she was with any of the other ones. I have also been concerned about the fact that Emily hasn't been wanting to eat or drink anything. Her pediatrician's office called me today to check on her after surgery and I told the nurse that I was glad that they had called because I was concerned about Emily still not wanting to eat or drink anything. Actually, I have been having to almost force feed water down her just to keep her from getting dehydrated. Our pediatrician actually called me back and we talked for quite a while. He thinks that Emily is just having difficulty from the anesthesia still and to give her a couple days. He said that it is possible that they used a bigger tube when they intubated her and it just really irritated her throat. He said to give it until Friday and see if she is better.
Despite the eating and drinking issues, and the sensitivity with the incision, Emily is really doing fantastic. We are going to VBS again tomorrow.
Tuesday, June 9, 2009
We are home!!!
We are home and it feels so good to have this behind us!!!!! Emily really had a good night last night. She only got up to go to the bathroom and needed just minimal pain medicine. The doctor came in this morning and said that she could go home. Emily isn't showing any signs of fever which means that there isn't any sign of infection right now. The incision site has stopped bleeding, and she didn't have any kind of hemorrhaging during surgery so she is good to go. We will go back next Tuesday to have the stitches out.
The car ride home was a little hard on her because of the jarring, but I put her blanket behind her head and that helped her. Once we were home, she really didn't want to lay on the couch. We were able to surprise Ethan and pick him up at Vacation Bible School. Emily was so glad that we got to do that. Ethan was very happy to see her, too.
Emily has moments where she winces in pain, but overall she is doing very well. This girl doesn't stay down for long. I can't help but think about when she was first born. I will never forget that moment when we were told about that massive brain hemorrhage she had. They told us that she would possibly never walk or talk and would probably have severe physical or mental disabilities, or both. The part of her brain that was damaged from the brain bleed was the part that controls gross motor skills and speech. I can remember looking at that tiny baby that she was and thinking that there was no way that those doctors knew what they were talking about. I looked at her and saw the tiniest fighter there was. I was determined to prove them wrong and I knew that SHE would prove them wrong, too. And I look at her now and I see that she is still fighting with everything she has. And one thing is definitely for certain, nothing has affected her mental abilities. As far as I'm concerned, she and Ethan are BOTH little geniuses. :) Whether she is the tiny baby, a two year old toddler, a five year old, or a six and a half year old, she will always be a fighter and will continue to defy the odds.
Monday, June 8, 2009
Surgery is over!
Today was rough. We are pretty emotionally drained. Emily's headache episode this morning continued even on the way to the hospital and she threw up three times in the car. Once we got there, they whisked us away and immediately gave her some Versed (sp?) to relax her and got her hooked up to the IV. She was pretty funny once she got that medicine in her system and we all had some good laughs by then. It did help break up the mood some and that was kind of nice. Emily was taking a damp paper towel and acting like it was an elephant's trunk. Then she took it and tried to make a paper airplane out of it. It was just really silly.
When it was close to time for her to be taken away, it was starting to get very tense. I think Emily knew that the time was getting closer, and so did we. Dr. Canady briefly stuck her head in the room and asked if we had any questions. I then asked her how long it should take. She said about an hour and a half. I also asked about it being more difficult because of her slit ventricles. Dr. Canady was very quick to the point and said, "Oh, yeah. It is going to be way more difficult." I just said okay and said that I didn't want to know details. That was when my stomach started to really turn. It was just a few minutes later when they were ready to wheel her away. We were only able to walk with her a short ways until they got to the double doors of the operating room. This was the first time ever that Emily has cried when she was taken away. In fact, she started crying and saying that she was scared and that she didn't want to go. She didn't want us to leave her. We tried our hardest not to lose our composure and to reassure her that everything would be fine. It was one of the hardest things that I've ever had to do, and I've had to do a lot of hard things in the past six and a half years. We heard her cries as they took her through the double doors and Rob and I just lost it in the hall. We cried together for a little bit and then made our way down the hall to the waiting room. We quickly had to get in control because we knew that my mom and dad had Ethan in the room and we didn't want him to see us so broken up.
After the surgery was over, Dr. Canady came to talk to us and she told us that Emily did fine. She did have to make a new incision instead of going in through her old scar. She said that the shunt valve was working okay, but the catheter was what was blocked. She had to replace the part of catheter that goes down into her brain. Let's just hope that this one lasts longer.
Emily got to go to a regular room and not the PICU this time which was great. She was in quite a bit of pain when she first came out of surgery, but she is already feeling great right now. She is watching tv, eating snacks, and coloring pictures this evening. Now that this day is behind us, I can finally relax and take a deep breath. I know we still have to worry about infection right now, but the chances of that are not high. Our biggest risk was during surgery itself.
When she first got to her room, Nana, Papa, Grandma and Ethan were all waiting there for us. As soon as she saw Ethan, she started reaching her arms out to him to give him a hug. I love how much they love each other. :)
I hope that Emily has a good night and I am even hoping that she might get to go home very soon. We have had enough of hospitals for the summer!!!!! I'll post another update in the morning and let everybody know how Emily did through the night.
When it was close to time for her to be taken away, it was starting to get very tense. I think Emily knew that the time was getting closer, and so did we. Dr. Canady briefly stuck her head in the room and asked if we had any questions. I then asked her how long it should take. She said about an hour and a half. I also asked about it being more difficult because of her slit ventricles. Dr. Canady was very quick to the point and said, "Oh, yeah. It is going to be way more difficult." I just said okay and said that I didn't want to know details. That was when my stomach started to really turn. It was just a few minutes later when they were ready to wheel her away. We were only able to walk with her a short ways until they got to the double doors of the operating room. This was the first time ever that Emily has cried when she was taken away. In fact, she started crying and saying that she was scared and that she didn't want to go. She didn't want us to leave her. We tried our hardest not to lose our composure and to reassure her that everything would be fine. It was one of the hardest things that I've ever had to do, and I've had to do a lot of hard things in the past six and a half years. We heard her cries as they took her through the double doors and Rob and I just lost it in the hall. We cried together for a little bit and then made our way down the hall to the waiting room. We quickly had to get in control because we knew that my mom and dad had Ethan in the room and we didn't want him to see us so broken up.
After the surgery was over, Dr. Canady came to talk to us and she told us that Emily did fine. She did have to make a new incision instead of going in through her old scar. She said that the shunt valve was working okay, but the catheter was what was blocked. She had to replace the part of catheter that goes down into her brain. Let's just hope that this one lasts longer.
Emily got to go to a regular room and not the PICU this time which was great. She was in quite a bit of pain when she first came out of surgery, but she is already feeling great right now. She is watching tv, eating snacks, and coloring pictures this evening. Now that this day is behind us, I can finally relax and take a deep breath. I know we still have to worry about infection right now, but the chances of that are not high. Our biggest risk was during surgery itself.
When she first got to her room, Nana, Papa, Grandma and Ethan were all waiting there for us. As soon as she saw Ethan, she started reaching her arms out to him to give him a hug. I love how much they love each other. :)
I hope that Emily has a good night and I am even hoping that she might get to go home very soon. We have had enough of hospitals for the summer!!!!! I'll post another update in the morning and let everybody know how Emily did through the night.
Today is the day!
We are getting ready to leave for the hospital. Ethan has been dropped off at Nana and Papa's house and should be at Vacation Bible School as I type this. They will come up to the hospital after they pick him up in a little while.
Emily has had a pretty emotional morning and has cried a few times. Ethan, the poor sensitive boy that he is, didn't want to eat breakfast in front of her since she can't eat, and ended up laying there in pain with stomach cramps this morning because he refused to eat. I finally convinced him that it was okay for him to eat something so he wouldn't get sick (the boy has to eat on a regular schedule or this happens) and he would still only eat a piece of buttered toast because it was the fasted thing he could think of eating because he just didn't want to eat in front of his sister. Bless his heart!
Emily had another nightmare last night, but it wasn't as bad as the last one. She ended up sleeping against me again last night and that was fine with me. I actually preferred it like that. We gave her a good bath this morning and washed her beautiful hair. I just couldn't stop running my hands through it. I always seem to do this before her surgeries when I know they are going to shave it off.
The timing of her surgery actually couldn't be more perfect. Emily is suffering from another headache again this morning. I had to get together a "throw-up bucket" to bring with us on the car ride. I can't wait for her to get some relief from these darn things.
I know that we have a lot of people praying for her and for us right now and I very much appreciate it. We very much need strength to get through this difficult time and we pray that Emily has an easy surgery and very quick and painless recovery. Emily's surgery is scheduled for 1:30pm today (Central Time). We will be leaving for the hospital in about 30 minutes.
Emily has had a pretty emotional morning and has cried a few times. Ethan, the poor sensitive boy that he is, didn't want to eat breakfast in front of her since she can't eat, and ended up laying there in pain with stomach cramps this morning because he refused to eat. I finally convinced him that it was okay for him to eat something so he wouldn't get sick (the boy has to eat on a regular schedule or this happens) and he would still only eat a piece of buttered toast because it was the fasted thing he could think of eating because he just didn't want to eat in front of his sister. Bless his heart!
Emily had another nightmare last night, but it wasn't as bad as the last one. She ended up sleeping against me again last night and that was fine with me. I actually preferred it like that. We gave her a good bath this morning and washed her beautiful hair. I just couldn't stop running my hands through it. I always seem to do this before her surgeries when I know they are going to shave it off.
The timing of her surgery actually couldn't be more perfect. Emily is suffering from another headache again this morning. I had to get together a "throw-up bucket" to bring with us on the car ride. I can't wait for her to get some relief from these darn things.
I know that we have a lot of people praying for her and for us right now and I very much appreciate it. We very much need strength to get through this difficult time and we pray that Emily has an easy surgery and very quick and painless recovery. Emily's surgery is scheduled for 1:30pm today (Central Time). We will be leaving for the hospital in about 30 minutes.
Sunday, June 7, 2009
Surgery Eve
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!!!!
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!!!!
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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