It’s been a doozy of an emotional roller coaster the past 3 weeks. Robbie's surgery on December 22, 2017 was a success and there have been no complications. However, his recovery right after surgery was a scary one because he had difficulty breathing , thus he was not getting enough oxygen. He was given several breathing treatments before he stabilized enough for us to see him the first time following the surgery. He was in tremendous discomfort and was finally given morphine in between other narcotics in a last ditch effort to alleviate the worst of the pain but it only helped minimally. I was told by one of the nurses that the first 2-3 days are extremely difficult; but most were unsurprised that he was up and attempting to escape out of the hospital crib within 24hrs afterwards. They figured out a good pain medication cocktail and that was that.
24hrs later, his personality is shining through.
Week 1 POST SURGERY: Robbie did great. Everyday he amazed us. He got tired more than usual but cat naps took care of that. He was definitely very active, he crawled as fast post procedure as he walked beforehand (LOL!) His pain was managed well with oxycodone during the day and gabapantin at bedtime. Come Jan 12th we have to go back to Shriner's Hospital again. Ideally he should be in his cast for 6 weeks, but with his high level of activity, the surgeon is just hoping for a solid 3-4 weeks before Robbie takes the cast off on his own.
Regarding his recovery and getting a prosthetic, the road ahead seems more clear than before. Hopefully, we will get some answers from genetic tests that are being done with tissue from his foot. We are also trusting that the cancer screenings at UC Davis Medical Center will bring more good news (Shriners Hospital is making this happen.) We will keep you posted on those results as soon as we become aware of them.
If you asked us what advice we might give to help someone else in a similar position we would suggest being persistent, getting a second and third opinion, not taking "No," "we'll have to wait and see," or "we've never seen this before," as final answers. Push until the experts or gatekeepers listen and, when they do, work together to get the best medical care possible for your loved one.
Weeks 2-3 POST SURGERY Robbie is definitely our superhero! He did not disappoint. Week 2, he gained confidence and tested the waters. Having his knee at a 90 degree angle did not stop him. By week 3 He started to walk and then he slowly gained momentum. So much so that, as predicted by his orthopedic surgeon, Robbie had broken his cast. He wore it down to the bottom, all the way through the gauze. Yes, his stump was peeking through.
Today was the 3 week mark! His cast, as predicted, has come off. What a mix of emotions today! There are feelings of joy that the cast is coming off. Yet, we are scared of the unknown. The incision is healing beautifully, and we can continue to move forward in the healing process. Nevertheless, it is still scary to be at the mercy of this mysterious condition and to recognize the possibility of aggravating the overgrowth...exacerbating it Instead of slowing it down. We will try not to dwell on the what if’s. We have faith and we trust in God's promises because there is purpose behind them. “But he knows the way that I take; when he has tested me, I will come forth as gold.” Job 23:10 NIV