Wow, a week has gone by and it seems as if I have barely blinked an eye, let alone lived through it!! Last Friday was my decompression surgery and even now it seems surreal at times! We arrived at the hospital at a little after 5 am, after momentarily freaking out my sister when she beat us there and I told her she was filling in for me instead, and we were settled into the waiting room and then into Same Day Surgery pretty fast. Bless my SDS nurse for getting a great line in with not much trouble, seeing as that would be the only time of the entire stay that a line cooperated. Everyone we saw and everyone that checked on us was amazing and went out of their way for our comfort and understanding. I had mentioned earlier that the surgeon expected my case to be 4-5 hours long. Although I knew I wouldn't care if it was 15 because I was sedated I knew my family was going to have a long day ahead of them. Even with the amazing nurse liaison that gave them as much of a play by play as possible, my 4-5 hour surgery stretched to 6 hours and 45 minutes and I can only imagine how frazzled the nerves of my family and friends in the waiting room were. Dr. Pollack had warned me that with tonsils descended as far as mine were there was always a good chance of them being folded, so we were aware that there could have been delays as she discovered just exactly what was going on in my head and neck, but we were not exactly prepared for what she DID find. My 14 mm herniation that was on the MRI turned out to be a herniation 14 mm down into the spinal canal and then forced backwards and wedged under my first vertebrae... ummm, no bueno!! That required more time and precision to unwedge the cerebellar tonsils, separate them, and then get them out of my spinal canal, which included doing a laminectomy and removing most of my C1 vertebrae as well as her finding several places where my brain had been under so much pressure that it had actually adhered itself to the skull bone and she had to literally scrape the brain from the bone to remove the bone plate. Yikes, just how much pressure was my poor brain and neck under and for how long?!?!?!?!!? So, 6 hours and 45 minutes later, and a couple of hours in the recovery room on a ventilator, I was moved to my home for the next 5 days, but I WAS able to leave the breathing machine behind in PACU, which was a HUGE surprise and relief for all of us. We had planned to be in Neuro ICU, but it was full and I landed in the Pediatric ICU with my wonderful friends and work family taking care of me. Even though I looked like a pumpkin from having been on my face for 6 hours and 45 minutes, everyone thought I looked amazing... or they were just telling me that so I wouldn't cry but either way, it sounded good at the time. I do remember thinking something was constantly in my eyes the first night and wanted the dressings removed around my head, only to be told time and time again that it was my eyelids over my eyes that were keeping me from seeing because they were so swollen and they couldn't exactly remove those... ummm, guess not!
Sleepy Sissas after a LONG surgery day
Dr. Pollack was all smiles when she spoke with my family and when she visited me on Friday evening before she left and was completely pleased with the surgery, despite the minor complications she ran into, although at one point someone did say she wasn't quite sure how I had been functioning as well as I had given the severity of my descending tonsils.
My sister and Darren were allowed to stay with me pretty much continuously for the first couple of days and I cannot thank them enough for caring for me and helping me and keeping all of my amazing friends and family updated so well on everything that was going on. By Saturday morning I was feeling pretty good, sitting up quite a bit, and only dealing with a pressure headache instead of all of the other crazy symptoms I had gone in with. Wow, is this what been "normal" feels like? Is this what being halfway healthy feels like?? It's been so long I had forgotten how bad I really did feel!! Although it took a tiny bit to get the pressure headaches under control, 10 IV lines in all, and of course the 8 inch incision that now lines the back of my head, I already knew I had made the right decision and that I felt like a completely new person.
Will took things VERY well, he climbed in bed with me, looked at my head and said "Way cool staples, Mom" and then crawled in the chair with Darren just to check one last time that I was really ok. After that, it was back to my normal video gaming, reading, oblivious kid who just kept saying "I am so glad you are going to be ok now, Mom."
My Kaity visiting!!
River was all smiles and more than happy to snuggle with Aunt Jen!
I cannot thank the surgery team, PACU team, PICU team, and my friends and family enough for their amazing care, support, prayers, and hard work to get me back up and running and getting my life back!!! Lisa, Marlee, Robert, Mary, Dom, Chrissy, and Sandy- all of you worked so hard to get me right where I needed to be and went above and beyond supporting me and my family. I am honored to have been an adult PICU patient and cared for by such wonderful caring nurses!!!
Now for one of the most exciting parts aside from the fact that I am feeling sooooooooooooo good after surgery and hoping that is a great sign for a great improvement in the quality of life I have had lately.... Although I am officially a Zipperhead now, my zipper will very likely hide quite quickly and I won't have to figure out how to even my hair out at some point because she did not cut or shave my hair! She used glue to hold it down and out of the way and stapled the hair into the incision when she closed it up. 27 staples, not including the original ones helping hold the dressings on, and tons and tons of glue that is going to take FOREVER to get out of my hair since all I can use is baby shampoo for 12 weeks.... yes, 12 whole weeks!!
So now I am home, resting and being spoiled, and going a bit stir crazy already, but knowing that life is headed back in the right direction!! I will be in Odessa for a while as I cannot maneuver my stairs well just yet, and then I will be tucked away in Gardner, message or call if you would like to stop by, visitors are more than welcome!! Thank you everyone for your continued thoughts, prayers, support, care, laughter, guidance, and love!!
God Bless,
Jenna
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