Today was the big day we have been trying to prepare for these past few weeks. I’m quite exhausted from all the adrenalin rushes, stress, little sleep involved with preparing and thinking about all that needed to get done and thinking about what this surgery means for our sweet girl so this post may be shorter and to the point!
We woke miss Raye up at 5:10am to have her take her medication before surgery. She started off all smiles, but by the time we checked in for surgery at 6:15am she was hungry and tired. We held her and snuggled for the next 45 minutes and she finally fell back asleep!
She slept then until we took her back with the anesthesia team so we could be with her as the sent her off to sleep. At 7:30am Josh and I left our sleeping angel and began the dreaded waiting process. We were told to expect a page around 8:30am that surgery was starting, but we did not receive the call until 10:15am. Surgery began about 10 and things were just getting going! We had some lunch, walked around, and were enjoying the sun and time together trying to keep our minds busy and not focus to hard on the events taking place. All the while constantly praying for a safe successful surgery. We were successful in keeping ourselves entertained as I missed the first page!! I did not expect such a quick call, and such a fast surgery but it was done! And at 12:45 we rushed back to the ICU to meet with Dr. Ojemann and hear how she was doing. Josh beat me there and by the time I made it (literally a minute maybe two after Josh) Dr. O was already gone and running to another appointment. A little sad, I listened to all he had told Josh, which wasn’t much but he promised to come back soon to inform me/us more about what went on. Around 2pm he was back and explained more in depth what he accomplished and what he saw. He successfully completed the functional hemispherectomy, removing a lot of the frontal and parietal lobes, some from other areas and then disconnecting the rest. There were many very abnormal areas of her brain, most severely abnormal was the motor cortex and that all was removed. Dr. Ojemann said “if I were to have tried to save some of her motor function I can guarantee she would continue to have seizures the area was so abnormal.” He said this in hopes to reassure us that this aggressive full hemispherectomy was the way to go, we agree with him 100%!
Finally around 2:30-3pm we were able to go into the PICU to stay with our girl! She looked very good, peaceful and happy for the next little while, but her peaceful face changed as she woke up.
Her little left are was shaking rapidly and she was just crying out in pain, she was very uncomfortable. Since then we have been giving her morphine more regularly as well as Tylenol to help keep the pain, and her fever down. Fevers are to be expected after this surgery as well as pain. She is going to be uncomfortable and grumpy for a few days, but she looks very good for what she had been through today! She has a drain for the fluid in her brain, hopefully this will be able to come out in the next few days. She has not moved her right arm or leg at all yet, and Dr. Ojemann said she probably won’t for a while. We are keeping a close eye on her, she is getting a lot of rest and is clingy tight to her binky, even though she’s not much into sucking on it as of yet. She will be getting her anti epileptics around 9, and we are really hoping she will be up for taking them orally, otherwise a feeding tube will have to be placed in order to get them into her system. All in all we are feeling hopeful, blessed and anxious for the days to come. Miracles do happen and we witnessed one today. This journey is just beginning and a “new normal” is once again in our future. The Smith family thanks all those who have blessed Colbey Raye and our family with prayers, support, and good thoughts.