Getting ahead of ourselves a bit...

I think we (doctors, nurses, respiratory therapist, and us) all got ahead of ourselves yesterday with seeing how quickly Alexander was recovering. That all changed quickly.  Alexander's behaviors of being happy and interacting, changed yesterday afternoon. It started at the beginning of his feeding session with a bottle. He was acting hungry but when he was fed, he ate a little bit before pushing the bottle away or drooling the milk out. By 10 pm, he didn't want to eat at all, was crying and didn't  want to lift his arms to engage in any activities crying. 

By morning, we learned he still hadn't consumed any food, was still drooling  the milk out of his mouth and was very red in his face (which is unusual for our pale little superman). Wes and I started to get worried and knew that something was obviously wrong.  Escpeially when he looked at us with a look of "make it go away" while crying. :(  Some the doctors seemed to shrug it off but one of Alexander's favorite nurses thought differently. She suggested that he was in pain because he hadn't had any pain medication in over 24 hours. We learned he was only receiving pain medication as needed. She stated that it is always better to be ahead of the pain than behind (which I fully agree on now!). 

During rounds, the doctors suggested to allow Alexander to eat by bottle and what he doesn't consume, would be put into his NG tube. We also learned that Alexander hadn't been given the proper amount of fluids because he was suppose to be eating more than he was, therefore he was on the verge of dehydration. Not good for cardiac children! So after giving him some pain medication, he finally calmed down, went to sleep and the redness went away. Since then, he has been given two doses of 30 cc's of milk via NG tube and seems to be feeling better. An occupational therapist is suppose to come assess him, to make sure there is no other problems arising with his suck, swallow, breathing coordination too. 

Alexander is off majority of his medications except for pain as needed (now that it is under control) and Sildenafil- a medication Alexander will be going home on. This is something new for us, as we were fortunate for the last 5 months of no medication! Sildenafil is used to relax and widen Alexander's blood vessels in his lungs which allows the blood to flow more easily. 

Alexander still does not have a voice, as they said it could take 4-5 days after extubation before it returns. I am so hoping we hear it soon, otherwise I will start to worry! I'm praying that his  pain begins to reside soon and that his feeding improves.

 As long as we don't get to much ahead of ourselves again, then we should be moving to the lower level: CV Acute soon. This means our Superman is that much closer to going home! Keep the prayers and positive thoughts coming for our heart warrior!