I am still trying to get all my thoughts together about K's surgery, but this will have to do.
Monday Dec 5 - arrival in Birmingham for CT Scans, goes well, but we spend all day at the hospital with pre-admissions, blood work and test results. CT results are good, surgery will be complex and expected to take 6 to 8 hours.
Tues Dec 6- arrive at Children's Hospital around 5:30 am for 5:45 check in, which took much longer of course. Called back around 6:30 or so and they take her off to sedation at about 8 am and we're told surgery will start within the hour.
This is where the waiting begins, there is no way to explain how hard it is to sit and wait to hear news about how your child's surgery is going. I was antsy, nervous, scared, and probably any other emotion you can equate with this. Finally around 9 they called to let us know that surgery had started. We were told it would take 6 to 8 hours, so we knew we were in for a long day. Thankfully they update the family every 2 to 2.5 hours, that makes it a little more bearable. Except when it's slightly over 2.5 hours and you begin thinking the worst. However for the most part our pager went off like clock work right around the 2 hour mark.
Around 3 PM we got the call the surgery was done and she was doing good. So then we wait for K's neurosurgeon to come out and talk to us. I've never been more happy to see this man ( well except after her 1st surgery) and I wanted to run up and hug him. He tells us about the surgery, how things progressed, what needed to be done and what he did. At one point he's telling us he has rolled up her spinal cord like a canoli and stitched it up..but then he said they lost all nerve roots. I sat there in stunned silence for what seemed like eternity, I know I had to be holding my breathe when he finally spoke again. He took all the stitches out and the nerves came back. I don't know how I didn't break down at this point. So he slowly stitched the spinal cord again, doing 1 stitch at a time to make sure the nerves didn't stop again and in the end everything was good. I breathed a sigh of relief and anxiously awaited the nurse to come take us to the PICU waiting area.
K spent the night in the PICU because she had a drain in to watch for fluid and extreme bleeding, thankfully she only had to spend 1 night in the PICU. When they first brought her into the PICU area, they stopped in the hallway so we could see her, oh she looked so pitiful. Her eyes were swollen shut and she was crying for us and reaching out for us. It was heartbreaking. I knew it would be hard, but I had no idea how hard. They took her on back and after she finally got settled in and visiting hours started we went back to see her. She cried and cried and reached for us and wanted for us to pick her up. They ended up having to give her a dose of morphine to get her to calm down, so we went ahead to eat dinner and came back. She was asleep so we went ahead and went back to the hotel for some sleep, we were completely exhausted by this point.
Wednesday morning, we headed back to see her and she was doing a little better, still wanted us but not quite as distressed as the night before. She started signing drink, so we got her some juice and she drained it lol. She was really thirsty and started signing more right away. It made me feel better that she knew what things were and could ask for it. Later that day we she got moved to a regular room and it was an awesome corner room, we had our own Christmas tree right outside the door. The first few days went by pretty quick, she slept off and on most of the time, we took turns sleeping at night in case she woke up so she wouldn't try to get up etc. She never had any other pain meds except Tylenol and Motrin once we were in the regular room. Amazing I tell you.
We were in a regular routine, almost as if we were home, cathing every 4 hours during the day, eating meals and snacks and naps. Only thing she couldn't get up, which by about day 4, she was done with laying down and kept trying to raise up in the bed to at least sit. It did hurt some though, you could tell and she would lay back down. Sunday morning her doctor came in and said we could pick her up, I was so ready and so was she. She clung to us and didn't want to be put back down and I didn't mind. While waiting for a few hours to pass to make sure her incision was not leaking etc, we walked around, saw Christmas trees, looked outside etc. She kept smiling and waving at the nurses, so I knew everything was going to be OK.
The first week home, was a little rough. She was extra clingy, sat with me on the couch 90% of the time, which was sweet but I felt bad she didn't want to get down and play. We continued rotating the meds at home to keep her comfy and returned about a week and half later to get her stitches removed. That was not fun, she cried from being held down and was not happy with us. Thankfully it went by fast and the doctor thought it looked great. Since then things have been pretty much normal for us, trying to get into routine and get her back to where she was physically before the surgery. So we've upped PT a few more times this month, trying to get her into outpatient therapy as well, waiting to hear back.
We return Feb 6 for our post surgery MRI, hoping it goes well and it's not to stressful for K. I am worried she'll freak out more this time when they take her away for the sedation, but we'll see. Hoping this will be our last appointment until our April SB clinic day. In the meantime I have 2 birthday parties to plan, one of her big sisters turns 7 in March and then K turns 2 in May!
So that's been our journey in the past month, not clear nor concise, but i wanted to write while I was thinking about it. I am sure things will come to me and I'll edit this or just add another post.
|K turned 19 months old at the hospital|
|20 Months Old|
|Happy New Year!|