Hi again. First of all, I'm sorry it took a while for me to write up an update from Lena's last doctor visit. We went to MD Anderson a few weeks ago on a Monday to get her checked for the clotting/fluid that caused the large bump on her head. Let me start by saying that typically our visits to the neurosurgeon are the least stressful of appointments. They usually get us into a room quickly and Dr. DeMonte is fairly punctual. Well, not for this visit. We waited in the waiting area for almost an hour before I finally went and asked to be given an idea of when we'd be called back. They seemed to have forgotten about us and there weren't any other patients waiting. Finally we were called into a room and a nurse we had never met was filling in for our usual nurse. She didn't know Lena's history so it was fristrating trying to ctach her up and fill her in when I knew we'd never see her again.
After another hour, we were told that the doctor was in the operating room. I didn't expect him to leave the OR to see us but I was getting agitated and Lena was getting bored and starting to melt down a bit. He finally called us from the OR. Yep, he just called into the room we'd been sitting in and never actually came to check her out.
So.. what we think we know. The doctor seems to think that the mass was a clotting of old blood, perhaps from the surgery that took place 4 months previously. He again stated that it was highly unusal and asked me to keep an eye on it. Although they had drained a large amount of the fluid the previous Friday, we needed to make sure there wasn't additional clotting and that her body was absorbing what was left.
As of now, there is still some fluid remaining but I don't think it's gotten worse. If this was to happen again, Dr. DeMonte would like to do a procedure where they put contrast (dye) into her brain to determine where the blood is originating from. We both agreed that she's been through enough and that we didn't want another procedure with anethesia right now. So, we're hoping this was a one time deal and that there's no need in the future.
On another note... Lena is really fighting against wearing her glasses anymore. She seems to have accepted that her one eyelid will not open and chooses to let it remained closed. However, at six years old, she doesn't understand the consequences. If she does not use the eye and keep strengthening it, she will lose her vision. It's a constant battle and it makes us feel so guilty. She's been through so much but we aren't willing to back down right now. We do hope that someday there might be a medical option that would help her gain use of her eyelid functions again but that would not do her any good if she has already lost her vision.
Keep her in your thoughts and send her strength.. oh, us too! :)
Love you lots! xoxoxo
Sunday, November 29, 2009
Friday, November 13, 2009
Here We Go Again
Hi everyone. It's been a while since my last post on Lena's progress and what is happening with all of us. Honestly, I was hoping that it would be a while longer before I logged on with any updates, at least any medical updates.
Tuesday was a normal day, as far as normal goes. The girls went to school, I picked them up, came home, made dinner and they got ready for their bath. While in the shower, Britt noticed that Lena's head looked a bit strange and asked me to take a look. As soon as she came out of the shower my first thoughts were... ambulance or drive to the ER? Lena had a mass, or something, the size of a tennis ball growing in the middle of her forehead. Britt stayed with Naia and Kira and got them into bed while I headed to Methodist. *Thank you Aunt Alli and Nick for coming to be with us and distract Lena! We love you the mostest!
Well, although I was a bit freaked out... or a hell of a lot freaked out... Lena didn't seem to understand what was wrong. She was not in pain and had not seen her head. It was fairly distorted and since I don't have any medical knowledge or training, I didn't know if her head was going to blow up, if her brain was swelling or if possibly the piece of her skull that had been removed had shaken loose and managed to shift. All I knew was that it did not look good. So after a quick CT scan, background information and call to our neurologist, it was determined that it was probably abroken blood vessel- basically a large knot on the head like you would get from being hit with a baseball bat. The problem was, Lena hadn't been hit, hadn't fallen that day and hadn't bumped into anything. The ER doctor admitted that it was highly unusual and strange.
So on to MD Anderson Wednesday morning for a check in with the neurologist. Same story... interesting, not normal, unusual... However, he was not so sure it was blood. There was not any discoloration under the skin and no sign of trauma. He wanted us to wait a few days and come back today, Friday, for an MRI and follow-up. He let me know that there was a strong possibility that he would need to take a sample of the fluid to find out what it was.
Now we're at today's visit. Lena had an MRI this afternoon. The amazing news is that she was not sedated and stayed still for the entire process (25-30 minutes). Dr. DeMonte couldn't believe how clear her images were and that she did such a great job. I tell you what, that girl is amazing. :) However, he learned that the fluid was neither pure spinal fluid nor pure blood. It was some kind of mixture of fluids. He told Lena he would be taking a sample. Yep! She screamed bloody murder and cried so hard I think the hospital was shaking! I held her steady as he first inserted a needle to collect the sample and then again as he inserted a needle to drain as much of the fluid as he could. All the while she is screaming, crying and begging me to take her home. Whew... you would think the girl's been through enough. Then the doctor bandaged up her head and wrapped it up similar to how she looked coming out of surgery last July, like a turban. Then Lena was crying because she has two birthday parties to attend this weekend and felt she did not look pretty. She kept telling me that everyone was going to laugh at her. She looked defeated and heartbroken. We had planned a Dollar Store visit after the appointment and she didn't even want to go there because people would see her. (So those of you who get that. Kids NEVER turn down a trip to the Dollar Store!) She walked hidden behind me all the way out of the hospital and into the car.
Although it was a tough week and a tough day, we are hanging in there now. Lena's spirits are improved and when Naia and Kira came home today, they were eager to see her and give her some love. They also had notecards from each student in their class to give her wishing her to get well soon and telling her they hope she comes back to school on Monday. I'm going to post a photo of her reading her cards when I get them uploaded. They really brightened her day and made her smile. :)
So... here we go again but I think this time, we're a little more calm, a little more prepared. We head back to MD Anderson Monday for a check on her progress. I'll write a quick update then to keep you all informed.
As always- much love to you. Hugs & Kisses- Holland, Kira, Lena and Naia
Tuesday was a normal day, as far as normal goes. The girls went to school, I picked them up, came home, made dinner and they got ready for their bath. While in the shower, Britt noticed that Lena's head looked a bit strange and asked me to take a look. As soon as she came out of the shower my first thoughts were... ambulance or drive to the ER? Lena had a mass, or something, the size of a tennis ball growing in the middle of her forehead. Britt stayed with Naia and Kira and got them into bed while I headed to Methodist. *Thank you Aunt Alli and Nick for coming to be with us and distract Lena! We love you the mostest!
Well, although I was a bit freaked out... or a hell of a lot freaked out... Lena didn't seem to understand what was wrong. She was not in pain and had not seen her head. It was fairly distorted and since I don't have any medical knowledge or training, I didn't know if her head was going to blow up, if her brain was swelling or if possibly the piece of her skull that had been removed had shaken loose and managed to shift. All I knew was that it did not look good. So after a quick CT scan, background information and call to our neurologist, it was determined that it was probably abroken blood vessel- basically a large knot on the head like you would get from being hit with a baseball bat. The problem was, Lena hadn't been hit, hadn't fallen that day and hadn't bumped into anything. The ER doctor admitted that it was highly unusual and strange.
So on to MD Anderson Wednesday morning for a check in with the neurologist. Same story... interesting, not normal, unusual... However, he was not so sure it was blood. There was not any discoloration under the skin and no sign of trauma. He wanted us to wait a few days and come back today, Friday, for an MRI and follow-up. He let me know that there was a strong possibility that he would need to take a sample of the fluid to find out what it was.
Now we're at today's visit. Lena had an MRI this afternoon. The amazing news is that she was not sedated and stayed still for the entire process (25-30 minutes). Dr. DeMonte couldn't believe how clear her images were and that she did such a great job. I tell you what, that girl is amazing. :) However, he learned that the fluid was neither pure spinal fluid nor pure blood. It was some kind of mixture of fluids. He told Lena he would be taking a sample. Yep! She screamed bloody murder and cried so hard I think the hospital was shaking! I held her steady as he first inserted a needle to collect the sample and then again as he inserted a needle to drain as much of the fluid as he could. All the while she is screaming, crying and begging me to take her home. Whew... you would think the girl's been through enough. Then the doctor bandaged up her head and wrapped it up similar to how she looked coming out of surgery last July, like a turban. Then Lena was crying because she has two birthday parties to attend this weekend and felt she did not look pretty. She kept telling me that everyone was going to laugh at her. She looked defeated and heartbroken. We had planned a Dollar Store visit after the appointment and she didn't even want to go there because people would see her. (So those of you who get that. Kids NEVER turn down a trip to the Dollar Store!) She walked hidden behind me all the way out of the hospital and into the car.
Although it was a tough week and a tough day, we are hanging in there now. Lena's spirits are improved and when Naia and Kira came home today, they were eager to see her and give her some love. They also had notecards from each student in their class to give her wishing her to get well soon and telling her they hope she comes back to school on Monday. I'm going to post a photo of her reading her cards when I get them uploaded. They really brightened her day and made her smile. :)
So... here we go again but I think this time, we're a little more calm, a little more prepared. We head back to MD Anderson Monday for a check on her progress. I'll write a quick update then to keep you all informed.
As always- much love to you. Hugs & Kisses- Holland, Kira, Lena and Naia
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