It's been four weeks since Brinley's surgery, but I wanted to be sure to update here about the process. First things first. Brinley is a superstar. She is amazing. I am in awe of her, truly. She took brain surgery like she was getting her tonsils removed. I am going to give the details of the surgery in this post, however this has been an amazing spiritual journey for us and suffice it to say we have had some very personal experiences through all of this and I feel so blessed..
2/20/13 - Surgery Day
We had a very calm few days leading up to the surgery. We all felt good about it and knew it would go well. That all goes out the window however when you have to hand over your baby to a surgeon to operate on her brain. Her other 4 minor surgeries during cancer she was only 2-4 years old, and taking her back to the OR was a much longer process. This time she was all smiles, no nerves at all (although she giggles when she is nervous, so I'm sure she was nervous because she was very giggly) so they didn't give her any medications to help the separation anxiety. They were running behind so they checked her out and rushed us to the waiting room. Dr. Brockmeyer came out for a brief consult, said we will never know if it was caused by her cancer treatment because her spine looked normal, but it is possible, asked us if we had questions and that was that. I felt flustered and could only muster up "I know you do this all the time, but we really love this girl. Please take good care of her". We wondered what he does to prepare to operate on a child's brain. Does he get up, shower quickly because he's running late, rush into the hospital and just go to work? Does he think or meditate first? Does he utter a prayer? Or is it just like David would log onto his computer to get started, he just starts the operation? These were some of our thoughts.
The anesthesiologist came out and walked us down the hall to the OR doors and said this is where we part ways. We expected it would be like her other surgeries, and it caught us off guard. That was a good thing because I didn't even have a chance to cry, just a quick kiss and hug and she was gone. They redid the waiting room and have areas sectioned off now, and I was so grateful for that. We found a back corner and held each other for a few minutes and cried (well, I cried). They told us it would take about 2 1/2 hours for the surgery, so David began the timer. We couldn't read or concentrate on anything else. The worst part was wondering what was happening the same moment as we sat waiting. Had they cut into her yet? Were her vitals okay? What if she woke up? How much was she bleeding while we sat there? Would she need a transfusion? Was her body handling the trauma? Had he removed part of her little skull yet? Had he removed part of her brain? What do they do with it, just throw it away I guess? What does it look like? Time went so slow, every minute was an eternity. Thankfully, Dr. Brockmeyer came out early, at an hour and 45 minutes! Seeing him took my breath away and I couldn't wait another second to hear what would come out of his mouth when he spoke. Please, God, let him say she is okay was all I could think. The surgery had gone perfectly. Perfectly. She would not need to go to ICU, just to recovery and they would call one of us back when she woke up. We gave a silent prayer of thanks and waited. When I went back she was in a lot of pain. It was hard to keep it together because she was just whimpering "mommy, mommy, my neck, my neck". They got some pain meds in her and she closed her eyes, although she stayed awake because she was nodding her head when I talked to her. She had blood dripping down her mouth from her loose tooth being removed and Vaseline all over her eyes so we cleaned her up. I couldn't see anything because her hair was a matted, sticky mess behind her head. I didn't even want to ask about it. The nurse finally asked if I wanted to see it. I carefully lifted her hair and saw where they had sewn her up. I sent David a picture of it and of her. It looked....gross. Bloody and gross. I just wanted to cry. It was torture for him to not be back there, but I was so grateful he allowed me to go back. I know it was difficult for him. He is a very involved Daddy.
When she was awake and stable they moved her to her recovery room. She was still in pain, but they finally got it under control. Once she had some good meds in her, she was amazingly happy. She was singing and laughing and being so funny. She was moving much more than we thought she would be, and at one point she just sat up and about gave David and I a heart attack. That first day was fabulous.
2/21/13 - Thursday
The next day was her worst day. She was in a lot more pain since the local anesthetic in her neck had worn off. They don't bandage the wound at all, so she was just trying to get comfortable. The only thing that was comfortable was to lay right on the incision. She said it didn't "bump" when she was laying on it. She got up to go to the bathroom and did great with a lot of help from Dad. We had a few visitors and that helped a lot. Her nurse said she seemed so great we could try getting a wheelchair and going for a walk to the play room. We went down there and she played for a few minutes, but then began having a lot of pain. The rest of the night was bad. We had avoided morphine until that point (I know, she is amazing....) but she was just hurting so bad. They gave her morphine and she finally fell asleep and slept all night.
Two of Brinley's favorite things, a big pretzel, and grandma!
Friday was a great day. She was feeling a lot better and was walking a little by herself. She was getting tired of the hospital and getting bored. We were hoping to leave the next day, but she wasn't drinking and they would take her off fluids, and a few hours later she was feeling awful and they had to hook her up again. Dr. Brockmeyer stopped by that morning and said she was doing unbelievably good, about 10x better than most patients with decompression surgery. I believe this is because her medical innocence was lost years ago and she didn't have to experience that again. It was a blessing that she was already used to poking and prodding and blood draws and IV's and pain. I felt like she started ahead of the game than most children who have to experience the medical world for the first time with this surgery. I was so proud of Brinley. I don't know why this felt different than her cancer, I guess because she is older and can express herself more. She was brave and strong during her cancer treatment, but I was amazed by her in a way I had never experienced. She will not be brought down. We can learn so much from children. Not only Brinley. It is a characteristic of children. It tells us in the scriptures to be more childlike, and I thought I understood that fully, but I was able to see another angle to it. She didn't let daily struggles get her down. There was no moping or feeling sorry for herself. She is bound and determined to be happy. I love that about her.
She was able to take a shower, and as you can see she really needed it. We tried to stay away from the site, but being able to get some of the gunk out of her hair felt so good.
2/23/13 - Saturday
Saturday she was walking around the room by herself. Our biggest concern was not having access to IV pain medications if she started having a lot of pain. She had not done well with the Valium and wouldn't take it, so pain was a worry since the muscle relaxer was important with her neck muscle pain. Brinley, however, was ready to go home. We had been given the okay by Dr. B to go home that day, but David and I felt afraid to leave the security of the hospital. By 1:00 she was practically begging and we conceded. Home felt so good.
When she got home we had a visit from one of Brinley's besties, Kodiak of the Utah Jynx. He has become like a part of our family (along with his family) and has always checked in on Brinley. We love him. It had been a hard day for her so it was the perfect time for a visit to lift her spirits.
2/27/13 - Stitches came out. She was nervous but as always, very brave. She didn't cry at all.
2/27 - One week post-op. Brinley had a few rough days. There was a particularly sunny day where Brinley could not go out to play (she isn't supposed to ride bikes, run, jump, swing, etc. until she is cleared for activity). She had a meltdown and was just so sad. She cried and cried "I just want my old neck back! The neck that was soft and smooth and didn't hurt. And I could run and ride my bike and play with my friends! I don't like brain surgery!" It was a hard day.
3/5/13 - Two weeks post surgery
She got a virus that was a setback with her recovery and her mouth had been covered with sores and she had 4 days of very high fevers, but it passed. Her neck looked like it had been a month. They hardly shaved any hair so unless she has her hair in pigtails you wouldn't even see it.
Four weeks post surgery: It has been hard. She started school last week and did really well, but she is frustrated with progress. She is still so tender all over her head and neck. She is still having stomach aches, so we are moving forward with figuring them out. She had her oncology visit and we are doing a "cleanse" this weekend to get everything out and see how she feels after that. She has lost 3 pounds, which is a lot when you only weight 42 pounds. I am hoping as she feels better and returns to full activity she will seem less frail and thin. The headaches have still been around, though not as often. She has felt kind of crummy the last couple days. It is discouraging, but we have to remember to be patient. She started out so fabulous that we had very high expectations for recovery. This will be a long road and it's very hard for her to be patient. The novelty of having a cool scar has worn off and she's not happy about the idea that it will always be on her neck. I know she will get used to it. The nice weather had been very difficult for her because her friends can go play outside and she has so many restrictions it's not much fun for her to be outside. She often says that she wishes she didn't have brain surgery during the times she feels discouraged. Then sometimes she is so funny, while doing homework when she figures something out she'll say "I can't believe a girl who just had brain surgery can do this."
Although she complains about it, she does love to show off her scar to anyone who visits. It's a big scar, but it's in a great place. And as my friend Crystal says, "Never be ashamed of a scar. It simply means that you were stronger than whatever tried to hurt you." She has a few to prove that. She is a strong girl and I can see how her experiences are shaping who she is. She has had so many challenges, and in so many ways that is just hard to watch. She is learning every day though and I have noticed something inside her that has changed. Her eyes water when we talk about adult things that children don't generally need to talk about. She understands that life is hard, but good. She learned that younger than most. She understands that "fair" is now always what we think it is. I just love her zest for life.
As far as the success of the surgery goes, like I said, we will need to be patient. I have noticed a difference in handwriting, balance and coordination, and things like cutting and coloring. So that is great news. I just hope and pray that she will "feel" better than she did before surgery. It's hard to separate from post-op stuff and what will continue to be a problem.
Sorry the update is so late. I really wanted to have it here for her, even though most of this is old news. This was her experience and I hope she will appreciate being able to look back through it and see what she's overcome.