long day

Within 12 hours, we went from good news to the bottom of the ladder again back up to a sigh of relief. Its amazing how many ups and downs one can have when it comes to your child.

Good news we began with- there is no significant fluid build up in his lungs and he is peeing more. More pee means less coming out of his chest, which is taking all his nutrients. We are on the right path says the doctor.

Then my parents came down, Mom made cookies again to sweeten the staff up towards Liam, it definitely works.

Bad news mid day-We had noticed a pretty bad bruise on his right arm last week and during the surgery, they used his right wrist for something called the art line, which draws blood from the artery without having to poke him every time. It was actually a godsend since they check labs several times a day. It ended up coming out yesterday, it was quite bloody and I about crumbled when I saw all of the blood all over him. Since it came out, we noticed from the elbow to his fingers were mostly bruised. And his ring and pinkie finger are completely dark. The concern is there might be a cut off of blood to his hand. In addition to all of this, the CPAP on his nose created such a nasal breakdown, it looks like the entire front of his nose has been cut. Its just one freaking thing after another.

They called the plastics fellow, who is from plastic surgery, to take a look. He tells us " I don't think he will lose his hand". Really, is that the bedside manner they teach you? They are going to follow it, ultrasound his arm tomorrow to see if he has any clots causing issues in there. Its just another thing to add on top of it all. With his nose, if it doesn't heal correctly, we may need to do a skin graft about 6 months from now. Seriously, little man is just getting the crap kicked out of him. But the funny thing is, he is being an angel, looking around, showing us a lot of personality.

More bad news which turned out okay- the doctors are getting concerned that the heart isn't the cause of the fluid, which is the main issue he faces right now. The good news is that his heart function looks great, two open heart surgeries later. So of course, we are now at the point of losing it because our son is draining out everything they have given him and they don't know what the cause is. And the doctor we feel best with admitted he is now concerned. So he calls our surgeon who says we just need more time and he thinks it is the original pleural effusions still draining from before his second surgery. That is good news to us and the best news we have had today. If this is something else, it would be heartbreaking. We want this to be treatable and not a big guessing game. As it is, we are going to be here for sometime, in ICU and that's hard enough.

Its been one of those days where we sit here questioning everything, the why of the situation particularly. Less about why us but why Liam, he is so little, pure and just a beautiful little baby. What can be learned through this, there has to be a reason why Liam was chosen. I can't wait to see him grow up and learn why, but these kinds of days are challenging my faith, everything I've always believed in.