And The Good News Keeps Rolling In

Another very good visit to Children's! This was Ethan's 2nd (and last) post-op for this surgery. His surgeon said he's healing up and coming along very nicely. It will take approximately 2 years for the scarring to finally settle down and heal. At that point, all the redness/pinkness/hardness should have finally disappeared.

We also met with Nutrition and his main Cranialfacial pediatrician. They are also very pleased with Ethan's progress.

As far as Nutrition is concerned, we are now devising a plan to slowly ween him off the bottle and on to 100% solids. The plan is to give him 3 meals a day of solids and alternate with bottle feedings in between, one first thing in the morning, and one just before bed time. We will be in touch with Nutrition in 2 weeks and then have another appointment to see them in August. They were all impressed that at this point almost nothing is going through the G-Tube and he is almost being fed 100% orally.

There is now talk of when to take the G-Tube out. G-Tubes in general have a very short lifespan and need to be replaced every 3-6 months. We are at that point now as his seems to be leaking - if you take the cap off (or as is the case with Ethan - he pulls it off or scrapes it open as he's crawling), it will leak somewhat. However, since he is doing so well with his oral feeding, the thought was to not replace the tube yet. We will simply leave it in for now (since we hardly use it) and save him the trouble of the replacement.

Replacing a G-Tube is a simple procedure that is done in clinic (i.e. no surgery required) - they simply pull out the old one and pop in a new one. However, it does take some force to pull out a G-Tube and I am sure it is about as enjoyable an experience as a swift hard boot to the head. It was felt that it was better to spare Ethan the experience and leave the old one in as it may be simply discarded within a few months anyway.

The criteria for removal is 2 months with absolutely no use of the G-Tube and no loss of weight or fall off in his growth trajectory. We are not there yet, but we are getting very, very close.

We are now not due for another appointment with his CF pediatrician for another 12-18 months - that's how well they felt Ethan is doing. The CF pediatrician will still of course be appraised of any other goings on (i.e. what Opthamology will have to say in August, if ear tubes are required (for drainage), when his dermoid surgery will be scheduled, etc.) but he felt he didn't need to actually see Ethan for over another year.

His plastic surgeon also said that there was no real need to see Ethan again until another 1-2 years. At that point it will be to simply evaluate how the scar is healing and to see if anything has changed in terms of his jaw development. His assessment at this point is that Ethan will be evaluated at age 7-8 to see if any surgery is required on the jaw. It is still quite possible that at that time, they will say that nothing needs to be done until adulthood.

One thing to note: because of the mandibular hypoplasia, Ethan will definitely have an overbite. How severe it will be and if any corrective measures are to be taken will be monitored and assessed primarily by his pediatric dentist.

We also discussed the possibility of speech therapy and any spinal issues (recall that Cranialfacial Microsomia patients can develop upper spine abnormalities). They felt that based on what they saw today, Ethan should have no need to see a speech therapist (however, it is something we will continually monitor and if required, he will be reassessed at 18 months). His spine looked fine and here too, they thought that there was very little risk of any bad surprises occurring.

So to sum up: Ethan is healing and recovering from surgery very, very well. The doctors are all pleased with his progress to the point that they don't feel the need to see him again for another year or more. The only things left on the near term horizon are the dermoid removal, the possible insertion of the ear tubes, and Nutrition's ongoing assessment to plan to get him off the bottle and get rid of the G-Tube.

- bob