As of 12/01/09:
We just got back from another routine visit to Children's.
They are *very* pleased with his growth/weight gain. Overall, they are very pleased with him - how he looks, reacts/responds, his head control, his alertness - everything.
They will schedule some tests in a few weeks to determine what kind of g-tube to insert and which surgical procedure they will use. The tests are to confirm there are no problems with his stomach, or any surprises of any other type. He is also scheduled to go into Children's on 12/15 to see Othamalogy and ENT - mostly because those teams have not yet seen him. He will most likely get his g-tube inserted in Jan. They feel they could probably get it done before Christmas, but with us going up to Vancouver for Christmas (unless we somehow don't get Ethan's passport in time), I didn't want to go up and be away from Children's and have some unwanted surprises occur with it. While the g-tube is temporary, in Ethan's case, temporary means 1-3 years. Even if his oral feedings improve to where he can be fed 100% orally, they feel they will leave the g-tube in for a while since he will be undergoing surgeries that may interfere with his feeding (like the surgical repair to his mouth) so the g-tube gives them options to keep his feedings on track.
The surgery to repair his macrostomia will most likely be brought in to about March now. The doctors feel his oral feedings will not improve significantly until the macrostomia is repaired and they would like to bring that in by a couple of months if possible (as his doctor put it: "as soon as possible"). We meet with the plastic surgeon again in January and at that time he can give us better visibility as to the viablity of bringing in the surgical schedule - but after today's visit, the way they were talking - it seemed almost certain it will happen in March now. They would also like to bring in the surgical schedule for his mandible repair (if possible) - also because he feels that this would help his oral feeding significantly. So now instead of occuring at around 4-5 years of age, it might be anywhere between 1-3 years. Again, the plastic surgeon will need to assess this. What the current (very early plan) is that while he is out (sedated) for the macrostomia repair, they will also do a CT scan of his jaw so they can get a better understanding of what needs to be done and proceed down the right path. As the plastic surgeon put it today - there are several paths this could go so it all depends on what is there to work with and what is there developmentally. This is also probably why his doctor wants to leave the g-tube in for a prolonged duration - if the mandible repair occurs at, say 2 years, best to have the g-tube in there to feed him while he recovers from the surgery.
Most likely, if we do indeed procede with the macrostomia repair in March, the ear tags will probably be excised at the same time.
No word on the dermoid as that is up to Othamology which we won't see until 12/15/09.
They do not know why his breathing has gotten worse in the last few weeks. They suspect it may be related to the reflux (the acid may cause more mucus build up resulting in the raspy breathing). ENT (on 12/15/09) will probably be able to give more insight/visibility on this.
We just got back from another routine visit to Children's.
They are *very* pleased with his growth/weight gain. Overall, they are very pleased with him - how he looks, reacts/responds, his head control, his alertness - everything.
They will schedule some tests in a few weeks to determine what kind of g-tube to insert and which surgical procedure they will use. The tests are to confirm there are no problems with his stomach, or any surprises of any other type. He is also scheduled to go into Children's on 12/15 to see Othamalogy and ENT - mostly because those teams have not yet seen him. He will most likely get his g-tube inserted in Jan. They feel they could probably get it done before Christmas, but with us going up to Vancouver for Christmas (unless we somehow don't get Ethan's passport in time), I didn't want to go up and be away from Children's and have some unwanted surprises occur with it. While the g-tube is temporary, in Ethan's case, temporary means 1-3 years. Even if his oral feedings improve to where he can be fed 100% orally, they feel they will leave the g-tube in for a while since he will be undergoing surgeries that may interfere with his feeding (like the surgical repair to his mouth) so the g-tube gives them options to keep his feedings on track.
The surgery to repair his macrostomia will most likely be brought in to about March now. The doctors feel his oral feedings will not improve significantly until the macrostomia is repaired and they would like to bring that in by a couple of months if possible (as his doctor put it: "as soon as possible"). We meet with the plastic surgeon again in January and at that time he can give us better visibility as to the viablity of bringing in the surgical schedule - but after today's visit, the way they were talking - it seemed almost certain it will happen in March now. They would also like to bring in the surgical schedule for his mandible repair (if possible) - also because he feels that this would help his oral feeding significantly. So now instead of occuring at around 4-5 years of age, it might be anywhere between 1-3 years. Again, the plastic surgeon will need to assess this. What the current (very early plan) is that while he is out (sedated) for the macrostomia repair, they will also do a CT scan of his jaw so they can get a better understanding of what needs to be done and proceed down the right path. As the plastic surgeon put it today - there are several paths this could go so it all depends on what is there to work with and what is there developmentally. This is also probably why his doctor wants to leave the g-tube in for a prolonged duration - if the mandible repair occurs at, say 2 years, best to have the g-tube in there to feed him while he recovers from the surgery.
Most likely, if we do indeed procede with the macrostomia repair in March, the ear tags will probably be excised at the same time.
No word on the dermoid as that is up to Othamology which we won't see until 12/15/09.
They do not know why his breathing has gotten worse in the last few weeks. They suspect it may be related to the reflux (the acid may cause more mucus build up resulting in the raspy breathing). ENT (on 12/15/09) will probably be able to give more insight/visibility on this.
-bob
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