SUPERMAN!

My son, Luke, is my hero. Seriously.

As I write this, we are 24 hours post surgery and he has made amazing progress. Early this afternoon they extubated him (pulled his breathing tube) to see if he could breathe on his own and he did pretty good. His lungs were still wet and sounded gurgly but he sustained breathing on his own.

I left the hospital after a LONG night of hearing many alarms coming from the many, many monitors that he is hooked up to. I needed sleep and the nurse told me to go get some at home since I most definitely would not be getting any by Luke's bedside. So at 6:00am when most people are getting off to work, I was rolling home to go to bed. I managed to grab some zzz's but felt really anxious to get back to my baby. I called to see how he was doing and was told that they had pulled his breathing tube and, honestly, I must admit I am glad I was not there to see it happen.

Seeing him this afternoon was incredible. He is so beautiful and I loved to see his face with less "stuff" attached to him. He was pretty peaceful until he decided that it was time to wake up. About then he realized that he was in pain, lots of pain and proceeded to let us know. Nothing is worse to a parent than not being able to help your child. I felt frantic as I watched him struggle to breathe as he cried. He was turning blue, in distress and obviously in pain. It felt like an eternity passed as the nurse got him some pain meds. They had taken him off of his narcotic pain meds so he could breathe on his own but in the mean time the other pain meds had not been sent up from the pharmacy. Did I mention yet that I was FRANTIC? When he finally got his morphine I'm not sure who felt more relieved--me or him. It was crazy to see how fast he checked out after that.

Thus beginning the very delicate balancing act that the nurses in the PICU find themselves doing. Luke was no longer in pain and was still breathing okay on his own. Then his blood pressure started to drop. More beeping from monitors. I'm feeling like a psycho mama bear by this point. Things finally settled down but by then I was wasted emotionally. Somehow I am supposed to keep making milk for this boy but the stress is killing my supply.

The cool thing about the nurses is that they are very ambitious in wanting to help Luke. He has his own nurse caring only for him so he gets excellent care. His day shift nurse, Molly, decides maybe we can try a bottle. I think to myself, this chick is obviously a crackpot! But seeing as she has been a PICU nurse for 25 years I decide she knows more than me and we go for it. As a side note, kids with Down syndrome are notorious for their feeding troubles. Add to that a kid having heart failure and it gets doubly difficult. Luke had done pretty well despite those odds until about 2 weeks ago when it became really obvious he was struggling to eat. For a kid in heart failure its like trying to eat while running a marathon, that how hard their hearts are working! Anyhow, it was taking him about 30 minutes to eat 2 ounces. Not good. Today though, he took 2 ounces of pedialyte and POUNDED it in 2 minutes. YEAH!!

So why is this post called Superman?? Well, what I didn't tell you yet was that when I went back to the hospital today I found my sweet, innocent, 3 month old baby in RESTRAINTS. Seems that he had decided that he wasn't into all those tubes and wires attached to him and he had been pulling them out. Part of me was so amazed that not even 24 hours after having open heart surgery my supposedly weak baby was giving the nurses a run for their money. Yes, I will admit that I even felt PROUD of him. That is my boy--coming out swinging and ready to rumble.

I have great hope. I am cautiously optimistic. I am tired. I am completely in love with a 12 pound blue eyed boy. He is Superman.