Some Good News

At the end of a very tense day, we have some good news to share. Today was the day for the heart catheter and everyone was holding his breath, fearing that some irreparable or incurable problem would be found that is responsible for Peter's chyle leak. The good news is that such a problem was not found. In fact, it was quickly established that, apart from the improvised connections of the pulmonary veins to the heart (his original defect), which are also working satisfactorily, everything looks fine, and no further blockage or problem was found.

The downside of this good news is that the chylothorax remains a complete mystery. The leakage has remained stable, at about 400 ml or so per day. The doctors are not giving up hope and will continue to try various treatments. The first thing they have already done, at our request, is to restart Peter on the octreotide, since Dr. Baker agreed that the suggestion of two nurses that the increased chyle leak may be related to the decrease in octreotide is a reasonable hypothesis.

The next step may seem a little strange at first: a tracheostomy. This coming Monday at 4pm, Peter will undergo another operation (his sixth) to provide a breathing opening into his windpipe. Although this is not directly related to the chyle leak, it will allow the breathing tubes to be removed from his nose. The direct result will be that Peter will be more comfortable and therefore need a lot less sedation. Peter will continue on the ventilator. The doctors want to use the pressure of the ventilator to combat the chyle leak (by reducing space in the chest cavity and thus denying the chyle room to leak in). This is a long-term treatment (several weeks at least, possibly months), hence the tracheostomy. Everyone keeps telling us that children improve rapidly on a "trache."

After that and in addition to that there will probably be further treatments (a chemical pleurodesis), but right now we are just happy that nothing devastating was found. Please continue to pray for Peter, that we might soon get out of this holding pattern, and pray for patience for us.