Honestly, it feels like he's been on this earth much longer. I feel like he's been through so much, much more than most people will go through in their lifetimes. And with so much grace and joy as he still continues to smile through it all. I just wish it didn't include so much pain, but I think that God made Nikolas special so that he can handle it much better than anyone else would be able to.
Even though the past two years have brought many ups and downs, Nikolas has taught me so much.
He has taught me how to love someone, unconditionally, not expecting anything in return. He has taught me that even though the world can be full of so many terrible things that it's still okay to smile. And to smile and love every moment because every moment is so precious. He has taught me to enjoy the little things, the things that really matter. He has taught me to care for someone and to push to get whatever he really needs done to actually get done, especially in hospitals and with doctors and nurses.
I love this little boy more than I can ever explain. I think any mother could say that about their child but somehow, I feel that my love for Nikolas goes beyond that. That my heart has expanded so much more than I ever thought for that little boy....I love my 3 other children just as much but with Nikolas, it's different somehow.
Nikolas is still having a hard time recovering. They extubated him on Wednesday the 8th. But he was having a hard time breathing and his oxygen levels kept dropping to dangerously low levels so they tried to put him on a cpap/bipap machine that uses a mask to blow oxygen into his lungs. He did okay on that for a couple days so they were able to transition him to a high flow nasal canula. But Friday evening he started having a harder and harder time breathing and his lungs sounded very course. His chest X-rays also started to look worse and worse...his lungs were slowly filling up with fluid.
And by Saturday morning his right lung had collapsed and he had to be reintubated for the third time.
My heart broke as I watched his limp body on the bed, trying to get a tube down his throat so he could breath. The first one they tried was too large, it was the same size they had used during the last intubation and surgery but his airway was so swollen that it wouldn't fit down so they had to use half a size smaller. Nikolas has always had issues with being intubated. Either with stridor or requiring oxygen for 5-6 days after being intubated. His epiglottis has been described as floppy and very narrow and it may be possible that he somehow reacts to the plastic on the tube.
But at this point we don't know what to do. We have tried multiple attempts at extubating, including using steroids and breathing treatments but his little body cannot handle working so hard to breath...especially after such a major surgery. We need to consult with pulmonology and ENT to figure out how to get him off the vent.
And hopefully soon because mechanical ventilation actually can cause the lungs to collapse so the longer he is on the vent the harder it will be to get him off.
There is talk about transporting him back to Children's Mercy via helicopter, as soon as Wednesday. Which would be so helpful to myself, it's hard to be away from Joe, Brianna and Benjamin. And Maya (also Aunt Yaya) has been so gracious to come with us to help....a lot..... and I know she needs to get back home to get things done as well. But at the same time I don't want to make a bad choice just because I want to get home.
St. Jude is amazing, it really is but since they are so specialized they may not see many kiddos like Nikolas and not have the experience in helping him the way that a larger hospital like Children's would.
We will see what the next few days bring us and we will just continue to pray that Nicky's little body will heal faster than ever possible!