Day 2- Hanging in the PICU

We had a mostly uneventful night.  I actually slept for about four and a half hours straight, which I think is a new all-time record for a sleeping closet in the PICU.  I came to visit Max about 4:30 am, and he was quiet, content, and very swollen.  We are surprised at the extent of the swelling this time around.  It started setting in immediately after sugery, and his eyes have already been swollen shut over 24 hours, where last time the swelling didn't start for about 12 hours, and then his eyes were only shut for around 12 hours.  (Hopefully, this means there was more extensive work and that they actually got the job done!)  His sodium levels were not behaving throughout the morning, and when they took a nose dive at the 8am check, I knew we were going to be here another day.

Luckily, because he has been through this before, no one is near as concerned as they were when we faced this in May.  We've still been doing sodium checks every two hours, but no one is concerned about the little fluctuations, and although his levels are still quite low, they're stable and moving s-l-o-w-l-y in the right direction.  We're hopeful (but not holding our breath) that we'll head to a regular room tomorrow.

So today has been blessedly uneventful.  It has amazed me how being in the hospital completely overtakes your world and changes your perspective.  I spent the last few weeks dreading the hospital stay, but now that we're here, in the middle of it, adrenaline and survival skills kick in, and before I know what's happening, being in the hospital seems like the most normal thing in the world.  You learn to rejoice in the really small things, (a shower, clean clothes, a baby that's sleeping because he's not in too much pain,) and have great conversations with other parents and staff members that you've never met before. 

I guess what I'm saying is that as of right now, things aren't too bad.  Don't get me wrong.  It sucks like nothing else to see your baby swollen, miserable and in pain, but considering everything, we're doing pretty well.  We're grateful that he's spending most of his time sleeping, and that when he's awake he doesn't seem miserable. 

Today's big milestone is that he finally is able to have fluids by mouth.  We were given the go ahead to start giving him water in a cup (which he loves,) and after convincing him that we weren't trying to torture him, he was thrilled and started guzzling it down.

A few hours later, he was awake and obviously agitated, and started reaching to me when he heard my voice.  He squirmed and was making familiar "I want to nurse now!" noises, so I stood at the edge of the bed and he latched on and went crazy.  After a few minutes in that cramped position, Tom and the nurse helped me arrange the wires and climb in next to him, and he happily clutched on to me and nursed for the next hour.  He then proceeded to throw up everything that he had just eaten all over himself and all over me, but everyone was thrilled that he was willing to nurse.  And after a dose of Zofran the wonder drug, Max was feeling better too.

After shift change, he heard my voice and started trying to crawl out of bed.  He was so happy to settle into my arms and go right back to nursing, (no vomiting this time!) and Max and I spent a happy hour and a half in the rocking chair.  It felt so good to hold him again, and do something, however small, to help him feel normal and peaceful. 

More pictures are coming, with the same warning- they're pretty graphic. 

You think I look bad?  You should see the other guy!

They had to make a slit in the turban because the swelling was increasing and they needed it to stay on.  Can't wait until it comes off, not just so we can see his new and improved head, but also because Max hates it!  We know he's awake because he starts tapping on his turban trying to get it off!

He loves these little dogs.  He reaches for them and clutches them close to his face whenever he's awake.

Finally getting some water.

Loving some daddy time.

I'm really hoping this is the worst of the swelling. His eyelids are starting to flip themselves inside out.

All tucked in for bed.

I can't say thank you enough for all your support, love and prayers.  I am amazed at the ourpouring of comments and concern for my little boy.  I have amazing friends and family- thank you!