Keep the prayers a coming...

Well, we may not have as bad of a situation of our hands.  Since the chylothorax was discovered early and we switched treatment up so quickly, we may have only lost one day in our timeframe.  Yes, I know that you can't set timeframes when it comes to babies, but I'm a nurse and time management is what I have to do. 


I pray to YOU oh sweet LORD, please let this be a teenie tiny road bump.  I want my baby at home, so I can give him all the kisses he needs. I know you have your plan, but I pray that Cason doesn't hurt and comes home soon. AMEN.

Here's our little buddy sleeping peacfully last night:

and watching his mobile this morning:

Just when we thought all was well....

First let me start by saying, the surgery went well.  Cason is such a little trooper.  His 1st post-op day was rough because he was hungry & hurting. After getting his feeds started and finding the right pain regimen for him, he calmed down and spent his night resting.  UNTIL.....

In the past hour, the nurse & I discovered that Cason's chest tubes are putting out a milky looking substance instead of the normal blood-like stuff. This means he has Chylothorax which is when the lymphatic system is unable to hold the fat in their vessels and it starts leaking out around the heart & lungs.  He had this after the first surgery as well.  They have already stopped his normal formula and have started a special "fat-free" formula that Cason will have to be on for 6 weeks AFTER the chylus stops. 

What does this mean for us, a longer hospital stay that the original 1-week plan.  Hopefully, we caught it early enough that he doesn't have to stay too long.  Will keep you posted.

It's been while....Big surgery day today!



Well, lots has happened since I last wrote.  We have been busy beyond words and writing anything has gone to the wayside.  Here is a very brief recap of the past 5 months:

Cason's meningitis caused another condition called hydrocephalus for which he had another surgery to place a VP shunt on March 6th.  Luckily, Cason was allowed to come home on March 09, but he had to continue to receive IV antibiotics and home health visits.  Since Cason had not been fed by mouth yet, he was on a continuous feeding pump around the clock.  The pump attached to an IV pole that we dragged throughout the house.  In mid-March, Cason was finished with his antibiotics, so we had a mini-surgery to remove the Broviac catheter and change his G-tube to a MicKey button. We've had another couple of MRIs which show that his head looks great.  Also, we checked his swallowing abilities a few times because of his vomiting and his lack of desire for oral intake. Thankfully much of that has resolved and we are now feeding him some of his bottle and even a little rice ceral by mouth.  We made two trips to the ER which one led to a few night stay. In June, Cason had his Cardiac Catheterizaion which show that his heart function is great, but that there is some narrowing of his aorta.  Cason may need a balloon catheterization to fix this in the next 6 month.  As for now, Cason just underwent his second open heart surgery called the Glenn.



The a picture of a normal heart, a HLHS heart, and of the 3 heart procedures can be viewed below:



Normal Heart VS HLHS heart



Norwood with Sano shunt
1st surgery



Glenn Procedure
2nd surgery

The Glenn & Fontan procudures
2nd & 3rd surgeries



 Cason is doing good at the moment. He is still really sedated to give his body a chance to get used to the new blood flow and the increase in oxygen in his blood.  I will be updating this blog this week while we are in the hospital, so more posts and pictures to come.  Thank you for all your love, support, and prayers.