We really don't know a whole lot about what is going on right now. This wait and see thing is extremely difficult. His left ventricle is narrower than it should be and the free wall (the side of it that does not touch the right ventricle) is not functioning as it should. This is causing not enough blood to get pumped from the left atria out into the body. With the blood not getting pumped it is causing pressure in the atria which is then backing up into his lungs. Right now his PDA is still being kept open by medication and therefore the right side of his heart is doing most of the work to keep his body oxygenated.
The good news is that Will is keeping stable with only minimal interventions right now. He is on medication to keep his PDA open and dubutamine (sp?) to help his heart function. But that's it. He is not on any oxygen and is getting fed my breastmilk (fortified to 24 cal) through an NG tube (feeding tube inserted through his nose). Right now he is slightly jaundice, but his billi is still within normal range.
The reason we don't know a whole lot of what is going to be happening is that our little guy has apparently caused a "major intellectual debate" among the doctors here. He has decided he wants to create his very own heart condition. He doesn't have HLHS, but he doesn't not have HLHS either. I know, confusing.
Dr. S (the cardiac surgeon) wants to go ahead with the Norwood procedure (the first open heart surgery used to treat HLHS) and then treat him as though he has HLHS. This would of course mean multiple open heart surgeries and that eventually the right side of Will's heart would be the source of support for his whole body. This would be a definite "fix" to Will's problem.
Dr. P (Will's awesome cardiologist, who I may just start calling Dr. Awesome) has been repeating echo's of Will's heart every day and has noticed some minor improvement in the function of his left ventricle. He does not want to do the Norwood procedure just yet. He feels that there is a chance Will's heart could get stronger and not need the typical HLHS surgeries. He wants to place a stent in Will's PDA (to keep it open longer, since the meds can only be temporary) and then place bands around his pulmonary arteries (I think) to better control the blood flow to his lungs. This is also an open heart surgery, but it would give Will weeks to possibly months to see if he could strengthen his heart on his own.
They have also discussed doing a heart cath to open his atrial septum and relieve some of the pressure building up that way. This would just be a way to better stabilize him for whatever procedure they would choose to do next.
No decision has yet been made about which surgery/procedure they will choose to do, but we have been told that one of them will happen on Monday, so be prepared for something to be done then. They will be doing another echo tomorrow, and we're pretty sure that will make the decision. We are praying that there is more improvement (actually praying for MAJOR improvement) in his left ventricle function, and that we can go the route of giving him more time to strengthen his heart.
So if you would like something very specific to pray for, here are a few things:
*That tomorrow's (Easter's) echo shows major improvement in the function of Will's left ventricle
*That the doctors can make the best decision for Will.
*And that he continues to do as well as he is on his own.
We'll be praying for our Easter miracle.
The first I had seen my little boy since he was only a few hours old (discharge day).