It's not all fun and games...

Overall, I would say that Max has been having a pretty great experience at the hospital. He can drink chocolate milk whenever he wants, he has complete control over the movie selections, he can play in the toy room, etc. Just today he got a visit from Snuffles the Clown. She sang him a song, did a few magic tricks and blew bubbles for him. He loved it!

I love that so much effort is put into making the children and families comfortable during the hospital stay. Tonight is movie night so a volunteer brings around a cart filled with popcorn, soda and candy that is free to all patients and family. Once Spencer and Morgen get here, we are going to load up on some treats and snuggle up as a family and watch "Madagascar" together. 

There are lots of great distractions to keep Max happy; however, he is in the hospital and there are parts that he does not like. He does not like taking his medicine. It is yucky. He does not like having tape or band-aids taken off. He has sticky stuff all over him and his skin is sensitive so he really puts up a fight when his bandages needs to be changed or removed. He does not like his tubes to be drained. The nurses have explained that most patients feel a suction sensation, not so much pain, but he gets upset and says it hurts. He does not like getting baths or having his diapers changed. I do that part and normally it would not bother him but I think it is just one more way that someone is touching him and bothering him- so he cries. 

It is sad to have him be uncomfortable, but in the midst of the "ouchy" stuff he says things that are so sad, they are cute. Here is a list of some of the expressions he will shout out whenever someone is doing something he does not like:

• I don't want anyone to touch me!
• I want to go home!
• No more ouchies!
• I don't like tape!
• I don't like the wires!
• No! No! No! Stop it!
• I really want daddy!
• This is the ouchy part!
• Stop it! It's done!
• I duper, duper don't like this!
• Someone is touching me!
• Let's take a break!
• Don't do it!
• But I don't want the medicine!
• What are you doing?
• But I really want a treat, right now!

It breaks my heart to hear him shout those things out, but I know the discomfort is only temporary and within minutes he is back to playing Cars or eating a snack. The fluid around his heart is drying up so the surgeon is going to pull his center drain and right drain tomorrow! His left drain is still putting out enough fluid to keep us here but it is tapering down. Hopefully we will be home by the weekend!

Getting a sponge bath. Saddest face ever huh? Those little shower caps are awesome- you just put them on his head, massage it around and then towel dry when you are done. It has rinse-free shampoo in there and they work great! He still doesn't smell yummy but at least he doesn't totally stink like hospital.