Saturday, May 4, 2013


Day 12 post Fontan and we are all home under one roof. Jasiu's blood work came back good from the morning draw (which took 3 times from the central line IV, mind you) the main concern was his INR level which is a test of blood clotting. Because Jasiu has a gortex tube for blood flow now, he is more prone to clotting which could cause a stroke, as a result he will be taking a baby aspirin and a blood thinning medicine, Cumadin (warfarin). Jasiu's result was 1.4 and they were happy with that so we just needed one final x-ray and we were out of there, well 3 hours later (hospital time) we were on our way.  Jasiu sat in the wagon, impatiently,  all dressed and ready to go for about an hour waiting for our discharge papers.

We finally made it out the doors and went home, about 10 minutes into our 15 minute drive both kids were passed out. Jasiu slept for 4 hours uninterrupted and Emily 3. I think that the hospital exhausted them both, when Emily woke up, she looked panicked and quickly asked "where is Jasiu?!?" When I told her he was upstairs sleeping she needed to go check because she didn't believe me. I guess she really loves him after all.

The rest of the night went OK, we have 3 big challenges in the next 6 weeks.

1.) Fluid restriction ( 930 mls / 31 ounces per day)  If not distracted he's begging and screaming for something to drink.

2.) Fat Free Diet - ideally zero grams of fat, at most we can have the .5gram a day from the 99% fat free hot dogs or lunch meat turkey breast that is on the market (one brand of each)

3.) Activity restriction - this boy thinks he can already conquer the world but the reality is his chest was just cut open and needs at least 6-8 weeks to heal. The first night we were home he tried to climb a chair and leaned his belly on the seat and tried to pull up and then screamed in pain, we didn't get there in time. For a pretty independent kid, this is a biggie. All he wants to do is go outside and play, run and most likely fall. When he falls on his knees and breaks the fall with his hands, it hurts him as well, I found out today :(

Today was our full day at home and we are still trying to get his fluid breakdown for the day so that he feels satisfied, it wasn't as bad as yesterday and we are still trying to figure out ways to distract him. We found ice cubes satisfy him for a good 20 minutes and also frozen yogurt bars do the same trick.  He is taking to his FF foods, and tomorrow I'm making FF waffles with applesauce instead of butter/fat, it will be interesting to say the least.  He also got a much needed bath which he enjoyed SO MUCH. I did his "vitals" today and found that Jasiu was running a slight fever, 99.5-100.1 F but we should call them if it gets to 101 at least. I have heard of many kids running a low grade fever after they go home and it was "nothing" and resolved itself, so we will keep an eye on it over the weekend and bring it up on Monday.

Monday we have our first INR check at the clinic and Friday is our 1 week follow up with Cardiac Clinic, X-ray, blood work and INR check.  So we will have a busy weak but still trying to stay clear of crowds and germies in hopes of a quick recovery.

We continue to thank you for all the prayers and support.

1 comment:

  1. So glad you are all home together. He looks great!