Tuesday, July 23, 2013

WE HAD A GREAT DAY - Step Down Update # 4

Holding hands while take a ride around the unit

We are now one week POST FONTAN! We waited 4 years to say that! Colin had a really good day overall. This is by far his best day acting like himself and playing. Of course it is great medicine to have big sis around half the day, she really brightens him up. 

We are playing the "waiting game" with his fluid on one of his chest tubes. It has decreased a good amount over the last 3 days, but still needs to come down some more. One tube is ready to be pulled, but they are waiting to do they at one time. They have tested the fluid coming out of his tube to make sure he does not develop Pleural Effusions (this is a complication after the surgery that would put him on a special diet and more follow up post surgery). The initial test have come back negative, but they will keep testing to make sure. We have heard once they pull the tubes, you have a day or two until getting to go home, so come on fluid, let's drain!

Colin's sodium is low right now, so twice a day he is getting added sodium in liquid form. They are hoping it corrects itself with the help of this. If not we will look into other medicines, if that does not work, they will consult with a kidney doctor. Please pray this is just a side effect of surgery and his system will work itself out.

We started the day in a bad mood with lots of coughing but it is good for him to cough. They gave him some pain medicine to help and then he really came to life. He walked so much today, went and played in the playroom for the first time, even took an elevator ride to see the library upstairs. Katherine and Colin had wagon races through the unit, bubble wars (working on expanding our lungs) and even opened some presents form the prize box for eating so well and taking our medicine.

Today was Colin's best day of eating as well. He had a WHOLE piece of bacon for breakfast, 1/3 of a cheeseburger, apple slices, and some french fries for lunch, and 1/2 a cheeseburger and fries for dinner (worked so well at lunch, decided to do it again for dinner). He also ate 1.5 bags of chips today and some M&M's). Baby steps, but we are getting there.
Taking a walk around the unit, sorry Matt - Grandma cut your head off
We are surviving through this together, it's not easy
THey love and miss each other so much
Coloring in bed
Katherine has had way too much fun here in the hospital
A little elevator ride to get out of the room and off the unti
Colin rocking out in the playroom

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