My husband and I left for the hospital at 9 AM the next day after a good night sleep, showers, and a packed bag of clothes and sundries. We were very hopeful that we will see signs of improvement from Lucas after he responded well to ECMO the day before. When we got to the hospital, we received news that his heart was not performing any better nor were his lungs improving. In fact, they were decreasing in function. Worse, the doctors don't know why or how to treat what they were seeing. We were devastated.
After the tears and initial shock, we gathered our strength, and went to Lucas to let him know we were there for him that we needed him to fight and be with us. So many friends and family want to see him well and I think he really was listening to us. We took turns over the next few hours talking, singing, touching and being with him. My parents brought Lucas's big sister to visit him and she was so sweet and adorable. She asked what baby brother was doing there and why he was "naked" and that she wanted him to come home with mommy. We sang "Frere Jacques" together, and then she had to go since she had a little sniffle and the doctors and nurses didn't want any risk of infection in the NICU.
While my parents took turns with Lucas and watching his big sister, my husband and I had a meeting with a group of doctors and specialists to discuss Lucas's condition and prognosis further. The summary: They are worried. They will keep Lucas on ECMO for the next 5 to 7 days to allow time for us to keep finding out what may be wrong with him and to allow his heart and lungs a chance to 'fix' itself. The heart is basically not pumping; not enough power to contract and in fact he has a clot at his heart becauce it is not pumping. He also has a clot in his lungs from the day before while he was put onto ECMO, and another one near his liver from overnight. They are keeping an eye on these clots and monitoring for more clots that may arise. The effects of these clots are not known at this point, and may or may not go away by itself as he gets better. If not, there may be ways they will remove these clots, but not now while he's on ECMO because this is basically keeping him alive. ECMO has basically taken him back into a womb-like state, in the outside world. They have sent off tests to check for any viral infections or any bacteria infections to see if these might explain why his heart and lungs are so severely compromised. After the 5 to 7 days they will evaluated his condition and go from there--is his condition isn't changing are there any diagnostic tests/biopses/drugs to try out. All of these things are high risk and we will discuss the pros and cons of those as time draws near. But for now we will wait and keep him as stable as possible on ECMO. But ECMO is itself a loaded canon. There are complications that may arise the longer he stays on it as in the case of clots or other organ failures. There are not a lots of pluses at this point, but one of them seem to be that his neuro scans and brain activity seem to indicate that he is function well and while there is no gaurantee that he may have problems later if he pulls through, his brain may be all right. Other plus is that so far, no kidney, liver, or other important organs have failed.
This afternoon, the cardiologists discussed trying immunoglobin treatment in case he may be suffering from cardiomyopathy. If he has a viral infection of his heart, the immunoglobin treatment (IvIg) may help clear it up. Risks are clots appearing in his system (which can occur anytime while he's on ECMO), and an allergic reaction to the IvIg. But the doctors feel that the benefits outweigh the risks at this point and will be giving him a dose tonight and monitor him over the next few days. Because they are not even sure this is his problem, there is no telling when we may see any affects or improvment. But we'll hope for the best and see what happens next.
In the meantime, I'm staying here at the hospital to be with Lucas as much as I can, and to pump colostrum and milk to give him intraveneously. My supply is very low and can only expell a little colostrom to be swabbed up for him to taste, but I'll keep trying. I will try to be the best mommy I can for my little Lucas.
Time to go pump now. Look for more updates everyday. Please pray for us and keep sending those positive thoughts and energy our way. Thanks for reading.
