Ups and Downs

Roller Coaster Ride...

The Friday before Will's surgery the cardiologist told us that his accessory vein was like a roller coaster from his lungs to his liver....well, they stopped the flow of that roller coaster with surgery, but the ride continues.

William was able to be extubated and free of the ET tube on Monday and has done so well weaning off his oxygen.  We are on room air and without any additional oxygen.  But, his respiratory rate and effort are not quite where the docs (and his parents) want them.  He is simply breathing too fast.  And, his lungs are a little too hazy on x-ray.  So, they added another diuretic today.  It seems like every time his electrolytes get back to normal, they have to change his meds to pull more fluid off his lungs. 

Right before the oxygen was removed!!

Big boy bed!  See his red hair!!  Only tube is his NG!!

The echocardiogram that was completed last week was not the most reassuring to the cardiologist.  It seems that his pressure in the left atrium (where the pulmonary veins were connected to the heart) are too high.  Ideally, the pressure would be 0 to 3 (max) and Will's were 6.  Discussion was made about when to repeat the test--early this coming week, and what would need to be done for repair if the pressures are still too high.  And, sadly, the answer may be another open heart surgery if they continue to be too great.  Please pray that they will improve and that his breathing will get better.  I am not sure that his mommy and daddy can handle more!!  And, we know William is strong, but how strong can one be at 5 weeks old?  Strong enough to endure another open heart surgery???  We pray that it does not come to this.

To top all of this stress off, the poor baby has chylous fluid in his chest.  This means that his lymph system was injured during surgery...kind of expected given such a small guy with limited chest cavity to perform the surgery.  But, this means that his lymph system cannot move the fats throughout his body like it normally would.  So, when he gets fatty foods in his stomach the fat then goes into his chest cavity and chest tubes.  Therefore his diet had to be changed...no more of mommy's milk.  He has to be on a no fat diet for 2-3 weeks.  Infaport formula and William are not in agreement.  He has thrown up after almost all feeds including his NG feeding tube on one occasion.  I know all too well that throwing a feeding tube up is the WORST experience.  And, I watched my baby do it!  Awful.  But, now we are trying something new to help him....double skimmed breast milk.  Hopefully, skimming the fat off the milk will help his GI system without harming the chylous.  Poor baby can't catch a break!

First outfit in almost 2 weeks---clean until the formula and Will did not mix. We are now wearing hospital gowns or blankets....too much throwing up for cute clothes!!