More Waiting

For the last several days we've been waiting for Monday evening. On Monday afternoons something like 14 cardiologists and 3 cardiac surgeons at Egleston get together for their weekly "Cath Conference" to discuss the difficult cases. Samuel did not quite make the cut last week, but he did this week.

First of all, this morning we got some mildly positive news. With the right meds the doctors think that they have reduced the pressure on the right side of his heart. This means that they are able to keep it from having to work so hard. Additionally, the PDA / ductus has continued to narrow a little bit. This is important both because it reduces the inefficient bloodflow (deoxygenated blood being pumped into the oxygenated bloodstream and down to the lower extremities) and because it allows doctors to see whether or not a coarctation (narrowing) of the aorta is forming there. From what they can see there is no coarctation. A potential ancillary benefit of this is that they would be willing to give him some breastmilk from the feeding tube in his nose once they remove the umbilical arterial line (UAC), and that could help his liver.

Unfortunately, the results of the "Cath Conference" were not so positive. Most of what we heard from our surgeon and pediatric cardiologist was not surprising to us, though it was disappointing. Some of the news pertained to painful, but real possibilities. In short, the conclusion of the doctors was that they need to wait and try to learn more because they still do not know enough to go in and do surgery. Our surgeon, about whose skill we consistently hear awesome things, said of Samuel's heart, "I've never seen anything like it." He says Samuel is certainly unique, "and that's never a good thing." They will do more echocardiograms (harmless and non-invasive ultrasounds) throughout the week and another heart catheterization (for which they will have to put Samuel under and put an arterial line through his groin) on Wednesday. The doctors acknowledged that they have narrowed the options, but he is a cause-and-effect mystery. As a result, our surgeon is not even sure that surgery would help Samuel. That was very hard to hear.

The hepatologist (liver specialist) believes that Samuel's liver troubles, which seem to continue to get slightly worse, are a result of the heart/circulatory abnormalities. The surgeon is not convinced. He wonders if there is a larger issue with the liver. Regarding the lungs, our surgeon and our pediatric cardiologist suspect that their struggles are a result of underdevelopment/premature birth and the heart issues. On the other hand, they acknowledge that not only are the lung's struggles greater than what they would expect, but they should be improving as he strengthens, and they are not. We are grateful for the surgeon's cautiousness. He acknowledges that if the liver and lungs were to get worse that we may be forced into surgery, but that apart from that scenario he does not want to operate unless he knows what we are really dealing with.

We also found out today that there is another set of fistulae from the left coronary artery into the left atrium. These are tiny, but they are many. They are inoperable. That said, the doctors are relatively unconcerned about those.

There are more details, but that is enough for now. Thank you all for your prayers and encouraging comments. K and I each check the blog multiple times a day and always tell each other when someone else is following the blog or posts a comment. PLEASE keep praying. We are heavy-hearted and sad. It is so hard to see our little guy on so many meds w/ so many wires (at least 11) and scary to think that there may be nothing the doctors can do. That said, we continue to trust our Lord and ask him to heal Samuel.

My consistent prayer:
- that we would be able to bring home a happy and healthy Samuel soon
- that Samuel would live a long and healthy life
- that the name of Jesus would be made great through this circumstance
- that God would do His work in us and through us

More specifically you can join us in praying for Wednesday's heart catheterization (i.e. Samuel's safety, good and clear pictures, conclusive information, doctors' wisdom), that Samuel's PDA would continue to close, and that his lungs and liver would improve. Thank you!!!!