Thursday, August 1, 2013

Slight set back

Colin's fluid draining came back positive for chylous effusion.

EXPLANATION: Sometimes the fluid draining from the chest contains fat, lymph. If the pressure within the chest area is high after surgery these vessels can leak fat into the chest, a chylothorax. 

WHAT IT MEANS: Starting tonight and for AT LEAST the next 6 weeks or more, Colin will be put on a STRICT low to no fat diet (they will discuss with us tomorrow) to help get rid of the fat that has leaked into the chest cavity. It does not slow down our process of going home, it is going to be a WHOLE new way of what he can and can't eat. He will be followed up through chest x-rays, once it is cleared up, we can introduce fat back into his diet. 

TIMELINE OF GOING HOME: No time soon, Colin is still having too much output, it is slowly decreasing but not enough. I joked with doctor about next Wednesday and she kinda laughed and not in a good way. They are not concerned that he is draining slowly, it just happens to some kids and we have to wait it out. 

He is getting one chest tube out tomorrow since it is barely putting out and it is a little red and irritated. The problem is they are going to squeeze us in sometime but he can not eat or drink after 4am in the morning and they might not get him in until the afternoon, so I am going to have one very pissed off 4 year old tomorrow who is going to be begging for food and water and I have to tell him no. Please pray that we get soon sooner than later! 

It was a little hard to take the news today as Colin has been eating the BEST HE HAS EVER EATEN and LOVES food now and is wanting to eat. BUT the things he loves, the things he is eating is all stuff he will not be able to eat on this new diet. We have a meeting with the dietitian tomorrow to get more explanation of what he can and can not have and how to introduce this diet to a 4 year old. But I know some other mom's who have gone through this, so looking for them on advice on what worked well. Colin will loose weight on this diet, then we will have to work to get the weight back on him after this. 

So a tough say but the good news is his heart is doing good and this just means a little harder recovery than expected. 


Fred Hill said...

We all share your disappointment, close to getting outta there...
I ache for each of you and how bad you want to go home and your Son wants to be in his own bed.
It will all work out of course, but just wanted you to know that it's ok for "misery to love company"...cause I feel just miserable with you right now.
Your Momma had told me about Colin all of a sudden asking for solid food, and good foods he may have never asked for previously or frequently.
We were both laughing and so thankful to see this dramatic change, and the good sign it seemed to be.
So, like I said, we know all is gonna work its way to the good.
He remains a Hero to us all, and needless to say, so do you and Matt, Katy, and my Sister and my Brotherinlaw.
Or as I say, "Aces in the Big Book"...
So just keep your chin up, shoulders back and chest out...oh wait...that's what I say when takin a picture...uh...just hold your head hgh, because you're a great example to you children and to your Family!
I am proud of you and I love you.
Your Only Uncle Freddy

Elaine said...

Your Uncle Freddy's comment was so sweet. We are all pulling for y'all! I can imagine the frustration with diet change after he finally decided to eat! Hopefully it will make him want it even more after new diet is past you. Hey, if you and Matt join him at home y'all can lose weigh too-NOT that you need to, you look great. I was just looking for another silver lining in addition to the big one that his heart is doing great:). Praise God for that!!!