Farewell, NG Tube. We hardly knew ye...

Well, that's not *exactly* true; we got to know the NG tube *quite* well, actually. But it's gone, and as the saying goes, "na na na na, na na na na, heeeeyyy, good bye!"

We had our regular Cranialfacial clinic today and the surgical nurse looked at Ethan's G-Tube/surgical site and said it looked really good and we could start using it (we were told originally Wednesday was the first day we could use it). So we did - right then and there (as he was due for a feeding at that time).

It was actually quite appropriate that Ethan himself had yanked out the NG tube just before we left for Children's. We decided to not put it back in just in case we got the go ahead to start using the G-Tube, and, well, there you go.

The clinical visit was very encouraging. His primary cranialfacial pediatrician was very nonchalant about everything - Ethan is progressing so well that he is not concerned about *anything*.

They had originally talked about bringing the surgical schedule in substantially (macrostomia repair in March, mandibular repair within the next 2 years) but since Ethan is doing so well and since his oral feedings improved so much recently, they felt the need to do this has now abated and we stick to our original surgical plan (macrostomia repair in May-ish and mandibular repair many years off). Normally, I would be very disappointed that the surgeries are being delayed, but in this instance, the reason behind delaying them is that everything is going so well. And in Ethan's case, the later, the better - as this gives him more time to grow and develop.

The mandibular repair is now pushed out to probably around 7 years of age. Another additional reason they were originally thinking to do the first surgery at 3-5 years (and then was subsequently brought in to 1-3 years) was to address his breathing/respiratory issues. But Ethan is improving here too - enough to the point that they do not want to do/risk such an invasive surgery so early. (The original thought was that if they lengthen the jaw, this would help open up his airway more by pushing the tongue and all related structures farther out). In addition, there is the very slight possibility (in Ethan's case, the doctors said it was highly unlikely but the possibility still exists (i.e. it is a non-zero probability event)) that there may be no jaw surgeries until he is 18 years old. They will simply continue to monitor him and see how his jaw affects his eating/breathing/speech and continually evaluate/re-evaluate. Like the doctors, I do not hold out a lot of hope for having no surgeries until age 18. Most likely, it will be around age 7. This also means that the CT scan scheduled for when he is knocked out during the macrostomia repair has been cancelled (which is good - less exposure to radiation over his lifetime).

Another upshot of this is that the G-tube may come out earlier now. We thought that it may stay for 2-3 years but with the jaw surgery now pushed out several years, they said they would not leave the G-tube in that long. The criteria for taking it out is Ethan must be 100% orally fed for 2 months with good growth trajectory during those 2 months and absolutely nothing going in the G-tube. If we can get there, and it is post-macrostomia repair, it is entirely possible we could lose the G-tube within a year. If we happen to get to the 2 month criteria *before* the macrostomia repair, they want to leave it in just in case his oral feedings fall off post-surgery.

They also commented that Ethan seems to be a little ahead of the curve in terms of his cognitive and motor development. The doctors were very impressed that he can already basically sit by himself (if only for a few moments) and that he is so alert and attentive. (Recall from (much) earlier posts that Cranialfacial Microsomia brings with it a 10%-15% chance of cognitive impairment). So this was very encouraging to hear.

So to sum up, as of 1/25/10, this is where we stand:
Ethan is doing very well in his growth and development. Next major surgery to excise the ear tags, fix the macrostomia, and clip his frenulum is back to around the May time frame. Next major surgery after that to address the epibulbar dermoid still remains around the September time frame. He is off the NG tube and strictly on the G-tube. If all goes well and he continues to make progress in oral feeding, we could lose the G-tube within a year. Their appraisal is that Ethan is doing so well, our next regular clinical visit won't be for another 2-3 months.

The general prognosis, in the doctor's own words: "Ethan is in the clear now". There was originally concern for his growth trajectory (since he was such a poor oral feeder) as well as his respiratory issues. But he seems to have gotten over the hump (like achieving the necessary activation energy, to borrow an analogy from chemistry) and things are going very well now. As they put it, moving forward, there should be very few (if any) surprises and any issues that follow will be expected (he may need his tonsils and adenoids removed by the time he is a toddler, he will probably need braces, etc).

The only other thing to note: the doctor noted that Ethan's dermoid seemed to be thicker. Ophthalmology mentioned that the dermoid should not change it's characteristics in any way moving forward. We expect to hear back to see if ophthalmology wants to evaluate this. If they do, regardless of what they find (if anything) we do *not* anticipate this will change the surgery date to remove the dermoid.

In all, it was a *very* good day and we are 3 for 3 for good news. Now if only the markets would deliver such good news on a reliable basis... (for those of you who might be interested at all, yours truly is scared enough of those idiots in Washington and what they may or may not do (i.e. actually *not* reappoint Bernake) that I purchased March 100 SPY puts as protection - yes I'm that worried...).

- bob