Hard Day with Good News

Hey everyone. Today was a bit tougher than the last 2 days in the sense that Max is getting quite bored and irritated with all the tests. Having people touch him, stick things on him, take things off of him, etc. He is quite sensitive now to pretty much anyone except Mama and I can't blame him one bit.
The surgery team, including Dr. Ross, came by first thing in the morning and Dr. Ross told Abbie that we'd be going home today! This news kind of took us by surprise. Then the cardiac team came by shortly afterwards and they decided to keep us 1 more night, which is still great news because its an earlier discharge than we expected and if all goes well, we will be home for Christmas!

They are not as concerned about his heart rate as we thought they were. Apparently it is not too far from normal for someone his age and it may just be that Max has a slightly elevated heart rate on a regular basis. These are things that we are learning about him as we go through this journey. They are more concerned about his fluid intake. He is not drinking enough fluid in their opinion and because he has needed IV fluids, they were hesitant to release us today. So in an attempt to fill Max up with fluids, he downed 2 juice boxes with a big breakfast and then he vomited all over the place when we took him to his echocardiogram appointment! Fun.

So in an effort to prepare us for a possible discharge tomorrow, today was a day full of tests and appointments again, which as I said earlier, Max is pretty much done with!

• He had his pacing wires removed this morning. These 2 small blue wires are actually attached to the heart using small stitches, then they poke through his belly on each side. They literally just pull the wires out and as they pull, they come off of the stitches that are on the heart. Pretty crazy. 
• He had all of his dressings and bandages changed and his surgery site looks really good. 
• Echocardiogram... Max's 7th one in 6 days. 
• ECG... I think I've lost count
• Chest X-Ray #5
• Jugular vein IV ("IJ") and stitches removed from the side of his neck

The chest x-ray today was probably our worst experience since being here. At first the girl asked both Abbie and I to step out of the room for the x-ray, despite Max being visibly upset. As if she was somehow going to lift him, put the cassette underneath him, maneuver him into place, keep him there, step away from the bed and take the picture all on her own, especially with an upset child!!! Dream on! I ended up having to hold Max's legs down with one hand and pin his arms above his head with my other hand while he cried, yelled and fought every second of the way. Pregnant Abbie couldn't be a part of the process so she had to watch from the sidelines. It was certainly a bit disappointing as every other person and process during this entire stay in the hospital has been exceptional. 

But the highlight of the day was when Max got to get up and go for a walk. His first few steps were tough. It was like he had to relearn how to walk. He was so unsteady and unsure. I guess after being in bed for 5 days straight, it makes sense. But it wasn't long before he attempted to run and even jump. Yikes! I think that slowing him down enough to prevent injury, will be the hardest part in the weeks ahead. We walked around the floor and even found a piano that Max played for a while. It was absolutely adorable as he loves music and musical instruments so much (see pics below).

He was quite irritable this afternoon as he was overtired and in desperate need for a nap, which we finally got it at 3:30. He had a great nap, some pain medication and a Booster Juice smoothie and things got a lot better from there!

His Tata and Papa brought us dinner from the Ronald McDonald House and then we all walked to a little play area outside the unit. Max wore his own dinosaur pyjamas and he had an absolute blast playing with all the toys. He was even running around a little bit, with 2 adults chasing him around (1 to prevent him from falling and the other holding his portable heart monitor)... it was a priceless moment. 

Please pray that all the tests come back looking good and that Max starts drinking more fluids on his own so that no more IV's are needed. This would mean that we could be driving home tomorrow! Thank you. 

Cam

Learning to walk again!!!

So cute walking around the unit!

Adorable. 

Playing the piano

More piano 

In the play area, playing with the toy kitchen with Papa and Tata

A drink in each hand in order to stay hydrated! Drink up!

Duelling pianos!

Father & Son moment