Well, we knew today was going to have its challenges but the challenges that we faced were just not aligned with what we were expecting. After a hectic morning of getting Kira and Naia off to school, on "Picture Day" no less, we headed over to Texas Children's Hospital. Our arrival time was supposed to be 9:30 with surgery scheduled for 11:30. As usual, timing is always off so Lena's surgery didn't begin until a bit after 12:30. Because the morning was so crazy, Britt and I didn't get a chance to eat breakfast. Well, we could have but chose not to in front of Lena since she wasn't allowed to have any food or drink this morning. What we didn't realize was that we both needed to stay on the floor once we checked in and there wasn't any food or drinks allowed. It makes sense though. None of the kids scheduled for surgery could eat or drink so that'd be pretty cruel to have food and drinks all around.
However, Lena held up better than we did. She was in a great mood and spent most of her time playing and drawing pictures. We'd take turns with Mommy drawing a picture for her to color and then she would copy the picture on her own. At 6 years old, Lena has some skill! (She gets that from me!) Since I had talked to Lena about the upcoming surgery last Friday at our pre-op appointment, she was prepared and didn't have too many questions about what was happening. She was happy that she would not be "poked" while she was awake and that she got to choose a flavor for the mask that she would wear that would put her to sleep. She choose Bubble Gum flavor. :) All in all, the morning leading up to the surgery went fairly well- just long and void of food!
Lena's surgery took about an hour and a half. When Dr. Edmond came out after the procedure was finished, she let us know that the surgery was more challenging than she had expected. With the damage to Lena's eye, 3rd optical nerve and eye muscles, we weren't that surprised. I think we've heard something similar throughout this process. It seems that everything related to Lena's tumor and the outcomes have been more challenging and just not routine. Dr. Edmond does believe that the surgery was successful though and that is what matters most right now.
We went to the recovery area once they brought us back to find Lena sleeping. The nurse let us know that she had woken up briefly and was pretty agitated. They gave her some pain medication and she fell back asleep. It was hard to imagine because although Lena cried after her last surgery, she didn't seem overly agitated. Oh, what a surprise for us when she woke up again. Lena began screaming and crying. Although we were warned, it was unnerving to watch as blood flowed from her eye instead of tears. I'm sure they were tears with bood mixed in but it looked like pure blood. Britt had a moment of panic caling for the nurse but I think he just didn't hear her when she was explaining that it was to be expected. Lena did not want to be comforted and was beyond agitated. She was kicking, screaming and crying. My heart was breaking as I'm sure Britt's was but we knew that a lot of the reactions were from the anesthetic. What we weren't expecting was when Lena began crying out that her eye wouldn't open. I think the whole room heard my gasp as I realized what had happened.
Somewhere along the way, Lena must have thought that this surgery was going to "fix" her eye and allow her to open her eyelid. Up until now she has accepted so much of what has happened to her with a calm strength that is unusual for a 6 year-old. I think we finally reached the breaking point. She was so mad when I told her that this surgery was not to fix her eyelid. She screamed that I was the "meanest mommy ever." I just thought my heart had broken before. Now it was crushed. Not only had she thought that this surgery would fix everything, I couldn't tell her that it would ever be fixed. Lena kept asking when her eye would be opened, crying that it hurt and was itching, and screaming out that she wanted to go home.
For those of you that know Lena, you know she can be a "toot" at times and occasionally can be willful but overall, Lena has a calm quiet disposition. For her to be so angry and frustrated was somewhat shocking. But here's the thing, just as my moments have come when I've lost it and broken down, I think it was time for her. She has held up so amazingly and been so strong through everything she's gone through. I think that for her emotional health, it was good for her to be allowed the freedom to lose it as well. Who am I to think that she doesn't need that outlet and need to know it is okay to be upset and angry? Although it hurt to watch it happen, I'm almost relieved that it did. After a while of letting loose, Lena finally came to sit in my lap, drank a little apple juice and fell back asleep. Soon after we were released to go home. She fell asleep immediately in the car and slept the whole way home. Once in bed she slept for a few more minutes then woke up ready to watch some television.
Lena has eaten some dinner and watched some t.v. with her sisters. She's back in my bed now relaxing and getting ready for nighttime while Britt reads a book to Kira and Naia. She's good and again, hanging in there. I'll keep you all updated on her progress. She'll be home for a while recovering and then back for her post-op appointment on Friday.
Sidenote: A while back I wrote in a post about how we are adjusting to our "new normal". Here's an example of one way in which our lives have changed. On the way to school last week, Lena was singing the tune for Dr. Jean's "My Mother is a Baker". Instead of the words to the song as we know them, she was singing, "My brain it has a tumor, a tumor, a tumor, my brain it has a tumor and the doctor says, Bye-bye." Oh, what to think? Wow, my child can create her own lyrics to songs. That's damn impressive. Wow, my child is singing songs about brain tumors? That's just flat out intriguing. Maybe I should send some new lyrics to Dr. Jean for a follow-up medical album release? :)
All is good and we've made it over another hurdle. Recovery now and her follow-up MRI in about 2 weeks... We're getting there. Love you my friends, my family. Holland
Monday, September 21, 2009
Wednesday, September 16, 2009
Upcoming Surgery
Hi everyone. I know it has been a while since I've posted anything new. Much has been happening but just those day-to-day occurrences that we all experience. The girls are getting settled in first grade and we are getting back into routines to keep us sane. Over the summer I seem to have forgotten how exhausting the 45 minute car ride home with them is after a full day of work. We actually broke down and went to pick up another DS recently! Having just two seemed fine until they all three became fixated with them and then caused more problems than having none. :) Seems to be the story of our life... Let's get one and share. No, maybe we should get two since they like it. Oh hell, let's go pick up the third! I think this has been going on since we thought we could get by with just one battery operated swing. You'd think by now we'd learn our lesson but as you know, there have been just as many times that we bought three of something and 1, 2 or 3 of the items never get played with. I was sharing with a good friend a while back how one of the girls' favorite "toys" right now is a baggie full of Dixie cups. You know which ones I'm talking about? I call them "Memaw's Cups" because my grandmother always had them in her bathroom but we never did at home. I thought it was pretty cool that when we went to Memaw's house we didn't have to use our hand to scoop the water into our mouths after brushing our teeth. Anyhow. we have these for the girls to use to rinse out their mouths and one day Naia realized they'd make a pretty decent pyramid. Since then they've made castles complete with a moat and bridge, pyramids, cars, houses for Barbies, etc. If you haven't gotten a box, you should think about picking one up the next time you're at the grocery store for hours of fun for about $2!
The main reason I wanted to stop in to write tonight was because Lena's surgery is quickly approaching. She'll be going in Monday to have eye surgery. Although I'm worried about the surgery and her reactions when we talk to her about going back to the hospital, I'm really happy that the date is close. Lena has had to wear her glasses every day. That's great except that her eyes are looking in two different directions. We are encouraging her to wear them properly to hold her eyelid open but on the other hand, it has to be difficult to function, read, play or even walk when there are two of everything and it's blurry. She has to do it though or her vision will continue to deteriorate. Then, once she gets home, she spends approximately the two hours until bedtime wearing a patch on the eye that has good vision. So now we're asking her to navigate with only her weaker eye that isn't even looking straight ahead. She can barely see and she has to turn her head sideways because the eye is pointed out. Ugggg, there's just no downtime for her. But as she has proven over and over, she is a trooper. She complains a bit but we now give her a Starburst each time her patch is put on and continue to encourage her to wear the glasses when at school even though it's confusing.
The eye surgery on Monday will basically consist of severing the two of the remaining 6 muscles that control the eye movement that are healthy and then reattaching those two so that her eye is stable and looks straight ahead. This will dramatically decrease the amount of double vision she is experiencing although it won't completely correct it since it really isn't that often that your eyes are both staring straight ahead. It's got to be better than what she's got going on now though and hopefully after the surgery, she'll be more motivated to wear the glasses and keep her left eye open.
Lena should be coming home the same day as her surgery and then will need 3-4 days of recovery. I'm not really sure what she'll be able to do during the recovery period but I'm sure we'll find some fun things to do to occupy our time. Maybe it's time for another pedicure and waxing lesson? :)
Once again I'd like to just take a moment to say thank you. I know there are many of you out there who continue to pray for Lena and keep her in your thoughts. So many people stop and ask about her each day that it fills my heart. I continue to write because I've learned how much I need that venue to process my thoughts and feelings but when I'm writing I try not to think much about people actually reading. For those of you who continue to follow us on our adventure, thank you. For those of you who are silently sending us strength, thank you. For those of you who love my daughter and allow yourself to be connected to her, thank you. She is worth it. She will be the one who grows and teaches me and those around her about strength, courage and perserverence. She will be the one who shows compassion and who strives to give. Her sisters will be the ones who are the protectors for those that need it. They will be the ones who work for equality. They will be the ones who understand that it is the heart of a person that makes that person what they are, not the physical attributes. They are deserving of the thoughts and prayers being spent on them.
One other thought... for those of you who are moms, whether you have little ones at home or whether your children are entering adulthood or have been there a while, I realized something... You are the "how-to" manual. Listening to your stories, watching you with your children, observing your face when you talk about their accomplishments or their struggles, you are the ones that give the rest of us strength to forge ahead. We learn from you, each and every day. Those of you who live day in and out with children with disabilities yet show up to work with a smile on your face, those of you who had a son or daughter pass away yet you live to graciously share stories of them with us, those of you who have watched your son or daughter move to another country, those of you who let your children grow to be what they want to be instead of what you want them to be... you really are the how-to manual for those of us who are struggling or are unsure of whether we're doing a good job. (Here's my processing in action!) I learn from you. You give me strength and courage. Thank you so much from the bottom of my heart.
I'll come along next Monday or Tuesday with an update on how the surgery went to keep you posted. Much love to you my friends. :) Holland
The main reason I wanted to stop in to write tonight was because Lena's surgery is quickly approaching. She'll be going in Monday to have eye surgery. Although I'm worried about the surgery and her reactions when we talk to her about going back to the hospital, I'm really happy that the date is close. Lena has had to wear her glasses every day. That's great except that her eyes are looking in two different directions. We are encouraging her to wear them properly to hold her eyelid open but on the other hand, it has to be difficult to function, read, play or even walk when there are two of everything and it's blurry. She has to do it though or her vision will continue to deteriorate. Then, once she gets home, she spends approximately the two hours until bedtime wearing a patch on the eye that has good vision. So now we're asking her to navigate with only her weaker eye that isn't even looking straight ahead. She can barely see and she has to turn her head sideways because the eye is pointed out. Ugggg, there's just no downtime for her. But as she has proven over and over, she is a trooper. She complains a bit but we now give her a Starburst each time her patch is put on and continue to encourage her to wear the glasses when at school even though it's confusing.
The eye surgery on Monday will basically consist of severing the two of the remaining 6 muscles that control the eye movement that are healthy and then reattaching those two so that her eye is stable and looks straight ahead. This will dramatically decrease the amount of double vision she is experiencing although it won't completely correct it since it really isn't that often that your eyes are both staring straight ahead. It's got to be better than what she's got going on now though and hopefully after the surgery, she'll be more motivated to wear the glasses and keep her left eye open.
Lena should be coming home the same day as her surgery and then will need 3-4 days of recovery. I'm not really sure what she'll be able to do during the recovery period but I'm sure we'll find some fun things to do to occupy our time. Maybe it's time for another pedicure and waxing lesson? :)
Once again I'd like to just take a moment to say thank you. I know there are many of you out there who continue to pray for Lena and keep her in your thoughts. So many people stop and ask about her each day that it fills my heart. I continue to write because I've learned how much I need that venue to process my thoughts and feelings but when I'm writing I try not to think much about people actually reading. For those of you who continue to follow us on our adventure, thank you. For those of you who are silently sending us strength, thank you. For those of you who love my daughter and allow yourself to be connected to her, thank you. She is worth it. She will be the one who grows and teaches me and those around her about strength, courage and perserverence. She will be the one who shows compassion and who strives to give. Her sisters will be the ones who are the protectors for those that need it. They will be the ones who work for equality. They will be the ones who understand that it is the heart of a person that makes that person what they are, not the physical attributes. They are deserving of the thoughts and prayers being spent on them.
One other thought... for those of you who are moms, whether you have little ones at home or whether your children are entering adulthood or have been there a while, I realized something... You are the "how-to" manual. Listening to your stories, watching you with your children, observing your face when you talk about their accomplishments or their struggles, you are the ones that give the rest of us strength to forge ahead. We learn from you, each and every day. Those of you who live day in and out with children with disabilities yet show up to work with a smile on your face, those of you who had a son or daughter pass away yet you live to graciously share stories of them with us, those of you who have watched your son or daughter move to another country, those of you who let your children grow to be what they want to be instead of what you want them to be... you really are the how-to manual for those of us who are struggling or are unsure of whether we're doing a good job. (Here's my processing in action!) I learn from you. You give me strength and courage. Thank you so much from the bottom of my heart.
I'll come along next Monday or Tuesday with an update on how the surgery went to keep you posted. Much love to you my friends. :) Holland
Subscribe to:
Posts (Atom)
