It’s been less than 2 weeks since her surgery and Ryan is back to her old self climbing on everything and causing trouble! She is recovering remarkably well and we are amazed by her once again.
The morning of the surgery (Friday) wasn’t as bad as we anticipated. We got Ryan up at 3:30 AM, bathed her in her special soap, and headed to the hospital. Even without much sleep or anything to eat or drink, she stayed pretty happy while a long line of medical professionals paraded in and out of our room. We saw at least 10 people from anesthesia alone. Ryan had something called “neuromonitoring” during surgery. They placed needles all over her body and would stimulate her nerves via the needles throughout the surgery to ensure there was no damage being done to her spine. Scary as hell but amazing at the same time.
After four long hours of waiting (Katie practically wore a path in the floor from pacing and I talked non-stop while chugging coffee and grading) we were told by the surgeon that Ryan did great. He learned from the neuromonitoring that her right leg is a bit weaker than the left and he could also tell that she had torticollis in her neck.
Then we finally got to see our baby. Ryan slept for most of the next 24 hours and when she woke she cried from pain. It was so hard to see her like that. She had IV oxycodone, tylenol, valium, and a muscle relaxer. We took turns sleeping in bed with her and stayed like that for about 48 hours.
On Sunday she started to feel better. She transitioned to taking her meds by mouth and was finally eating some food. She even got out of bed to walk. Ryan continued to improve after all her IVs and leads were removed. Her sensory problems were through the roof with everything all over her and once she was free we couldn’t keep her down!
Charlie came to visit her on Monday and we were told that if Ryan pooped, we were cleared to go home! After 2 doses of senna and 2 doses of Miralax and a poop on the precipice, we left that night! Apparently Ryan is a home-base pooper because once we arrived… well, you can only imagine.
Since then, Ryan has stayed comfortably cocooned at home and away from all potential causes of infection and injury. Then on Tuesday she got her stitches out and she is now allowed out and about!
When we were told that Ryan had to have this surgery, we knew that there was no guarantee that it would have any positive effect on her stability although that was the hope. I am happy to report that we have already seen a big improvement in her balance. In the weeks leading up to the surgery, both Katie and I felt that she was taking a turn for the worse. She could barely stand up without falling over. Now she stands without looking completely wasted! Watch this!!!!!
When Ryan was first diagnosed with her chromosome abnormality, and I was feeling so low emotionally, our families, including my Fairfield work family, wrapped their arms around us and gave us so much love and support. I felt that love two-fold in the last few weeks and I don’t have the words to express my gratitude. There are too many people to list but please know that the cards, candy, Facebook messages, texts, calls, meals, gift cards, outings with Charlie, and gifts for both girls meant the world to us and we love you all.