They weren't exaggerating, the masses (as there are several small cysts rather than a few large ones) take up a large area in his neck and upper chest. His trachea is significantly deviated as a result and there is even some tongue displacement because it is pushing up on his jaw. According to his doc, the majority of the cysts are more solid. She says this is not necessarily better or worse than a more fluid filled cyst, but the more solid cysts do not respond very well to sclerotherapy and this is possibly why we did not have great success with it last week. The tricky part is that on the right side of his neck and around his clavicle there are cysts surrounding a bundle of nerves and two major vessels, one that runs down into his arm and the other up into his neck. These are more fluid and, because of the risk, will not be resected (removed). If they become an issue the sclerotherapy may be an appropriate treatment option. Despite all of this, Sutton really likes his pacifier!
He will have a bronchoscopy done late in the afternoon on the 5th to take a look at what happens to his airway when there is no tube holding it open. We do not know how long the cysts have been present (I had my last ultrasound at 28 weeks and it was not seen then, but it could have been difficult to see even if we had been looking for it) and it may have weakened the cartilage in his trachea. This is in preparation for a partial resection where they will remove as much of the mass in the front of his neck and chest as is safe, in the hopes that it will be enough to relieve the pressure on his trachea and jaw and allow things to fall back into the appropriate place. The partial resection is scheduled for Monday afternoon and will take several hours.
The incision will be on his neck so he will remain intubated until it heals. After it has had some time to heal we will reassess whether a trach is still necessary. Any way you spin it, we are looking at another several weeks to a month here in St. Louis and will spend the next several years following up on an outpatient basis with his physician.
I asked the ENT to explain what the interventional radiologist meant when he said that the condition would resolve itself by toddlerhood. She said that the condition will not go away, but it can often remain dormant without swelling as long as the individual isn't sick. When he gets sick we may see some swelling in his neck. For those of you that have children, you appreciate what a task the next several years may be in maintaining his health, especially with a 2 year old at home!
Also, yesterday they removed his umbilical line and placed a PICC line on the left side of his head. They had previously shaved some hair off in an attempt to get a peripheral IV in and they ended up having to place the umbilical line but, fortunately, they were able to place the PICC in the area they already shaved so he incurred no further hair loss. :)
Right now, we just want all of the procedures to be as safe and successful as possible. We are really hoping to avoid a trach still, but only time will tell.
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