No Countdown Yet

Yesterday and today have definitely had their challenges but things seem to be going ok overall.  The drainage from the chest tube has slowed down some but not enough where they would consider removing it yet. 

Some of the tests they did on the fluid right after they put in the chest tube came back borderline for chylous - meaning it contains lymphatic fluid rich in fat that is normally absorbed by the intestines.  This is a complication that happens occassionally and is treated by a low fat diet so they have put Landon on that for now to see if it affects the amount of fluid output.  If it seems to help dramatically he'll proably be on this diet for 6+ weeks.  The limit is 10 grams of fat per day which is a very small amount (I ate a bag of sun chips for lunch with that amount).  This means we have to plan each meal and snack very carefully and it's a challenge to make sure he gets filling foods and a variety of nutrients while sticking to this limit.  Landon has done very well with it so far and luckily has not asked for some of his favorite foods the last few days (french fries, pizza, donuts).  He has a mild milk allergy as well which provides an additional challenge since skim milk and fat free yogurt would be good sources of low-fat calories and protein. 

Our understanding of the next steps are to watch what the fluid output does over the next few days and see if it starts to drop off, continue the low fat diet, and hope for good xrays.  The last few days the xrays have been good though so it is a good sign that his body is draining the excess fluid it produces.  The surgeon has also mentioned wanting to do another cardiac catheterization possibly tomorrow or Monday but we need to discuss that with him a little bit more before we move forward with it to determine what is leading him to want to do that. 

Overall Landon has continued to be a champ and even after major meltdowns (as in - MAJOR)bounces back to his happy self.  He is still wary of the doctors and nurses (we have heard one too many times how "developmentally appropriate" this is) but has gotten a little bit better with a few things.  The xrays have still not been fun but haven't been quite as bad the last few days.  Just this morning he had labs drawn (a finger prick followed by lots of squeezing) and xrays before he had even had breakfast so the mornings are usually not easy.

Right now we don't have a proposed discharge date on the calendar - our expectation is that it wouldn't be before early next week since they'll want to be extra conservative when pulling the chest tube this time.  There are a lot of variables and possible next steps so we're just taking it one day at a time.  Luckily things like the playroom and going down to see the ball machine in the lobby provide welcome breaks for all of us in days that can be difficult.