The results... Part I
So our big adventure is over, and yet it has really opened up another big chapter of unknowns!
We discovered that Caden does in fact have a Posterior Cleft, a slight one, and he had the gel film injection and we stayed over night after his scope. Everything went well and after a cranky awakening from anesthesia he inhaled (and that isn't even he correct term) noodles and ice cream and enjoyed the play room on the children's floor.
The amount of questions I have are enough to fill several volumes of encyclopedias, I may be dating myself there as generations these days have no idea what I am referring to! But here is what I DO know:
- The cleft is rare, as I said before 1 in 10-20,000 kids are estimated to have it and boys tend to show more than girls at a ratio of 5:3
- There is very little research that I can find, and the research I CAN find is medical journals that were forged in the cold, dark depths of Hell where the Spice Girls wrote their most famous ballads and the FBI convenes to decide on the appropriate techniques for water-boarding and how to keep Justin Beiber out of the country. My main source of information has pathetically become a facebook group of other parents going through the same maze.
- The gel film injection that Caden received is only temporary- it lasts anywhere from 2-3 months and is a new thing- add this to a sub-list of things to be worried about. This means that there is limited data and limited knowledge on how exactly it will play out. The reason doctors are moving towards this temp fix is to move away from the permanent surgery, which I understand, but it doesn't make it any less frustrating.
- The gel basically bulked up the area between his wind pipe and his stomach pipe at the top of his throat- there was a gap where there shouldn't have been. We were lucky enough to have seen results almost immediately! The theory is that as this gel "wears off" he will regress to his old ways and prove that his eating/swallowing problems were due to his cleft and we will go forward with a permanent surgery. There are of course a million variables here: it could take longer for him to regress, he could not regress at all and just have needed that little push to teach himself to eat properly, he could still have problems after a permanent surgery, we could do a second (third, fourth, etc) or the temporary rather than permanent surgery and the list goes on- all of these items have his ENT (Ears, Nose, Throat doctor) and his Speech & Nutritionist team following him- which also means repeat swallow studies to follow his patterns and progress or regression as well. So the documentation and visits continue to be ongoing.
- Right now, we seem to be at a good place eating-wise, and are hoping that in about 3 weeks he goes back to choking and not eating so we can see in his repeat swallow study that he regresses back to his old ways and we can get the permanent surgery done. It seems odd that we would hope for something bad to happen- but if he stays eating well, then we will be in constant fear of him regressing back to what he did before (which is still a possibility, even with the permanent repair, although there is a much less likelihood of that happening). After seeing how the gel fill has helped him- it almost confirms that the cleft has been present all along and the culprit of 95% of his problems.
- After the procedure, within one week, he gained 7 ounces a day! That is incredible! He is still right on the growth scale where he should be, smack in the middle, and I have him weaned down to one Pediasure a day- and thanks to how wonderful Pediasure tastes he won't drink regular milk, so we have to wean him BACK onto that as well as battle the joys of toddle pickiness and juggle his aversions to foods with his new appetite which makes for long mealtimes and a stressed out mommy by the end of the night- but in the end- I have a happy toddler who is on the road to eating just like all the other toddlers out there!
We discovered that Caden does in fact have a Posterior Cleft, a slight one, and he had the gel film injection and we stayed over night after his scope. Everything went well and after a cranky awakening from anesthesia he inhaled (and that isn't even he correct term) noodles and ice cream and enjoyed the play room on the children's floor.
The amount of questions I have are enough to fill several volumes of encyclopedias, I may be dating myself there as generations these days have no idea what I am referring to! But here is what I DO know:
- The cleft is rare, as I said before 1 in 10-20,000 kids are estimated to have it and boys tend to show more than girls at a ratio of 5:3
- There is very little research that I can find, and the research I CAN find is medical journals that were forged in the cold, dark depths of Hell where the Spice Girls wrote their most famous ballads and the FBI convenes to decide on the appropriate techniques for water-boarding and how to keep Justin Beiber out of the country. My main source of information has pathetically become a facebook group of other parents going through the same maze.
- The gel film injection that Caden received is only temporary- it lasts anywhere from 2-3 months and is a new thing- add this to a sub-list of things to be worried about. This means that there is limited data and limited knowledge on how exactly it will play out. The reason doctors are moving towards this temp fix is to move away from the permanent surgery, which I understand, but it doesn't make it any less frustrating.
- The gel basically bulked up the area between his wind pipe and his stomach pipe at the top of his throat- there was a gap where there shouldn't have been. We were lucky enough to have seen results almost immediately! The theory is that as this gel "wears off" he will regress to his old ways and prove that his eating/swallowing problems were due to his cleft and we will go forward with a permanent surgery. There are of course a million variables here: it could take longer for him to regress, he could not regress at all and just have needed that little push to teach himself to eat properly, he could still have problems after a permanent surgery, we could do a second (third, fourth, etc) or the temporary rather than permanent surgery and the list goes on- all of these items have his ENT (Ears, Nose, Throat doctor) and his Speech & Nutritionist team following him- which also means repeat swallow studies to follow his patterns and progress or regression as well. So the documentation and visits continue to be ongoing.
- Right now, we seem to be at a good place eating-wise, and are hoping that in about 3 weeks he goes back to choking and not eating so we can see in his repeat swallow study that he regresses back to his old ways and we can get the permanent surgery done. It seems odd that we would hope for something bad to happen- but if he stays eating well, then we will be in constant fear of him regressing back to what he did before (which is still a possibility, even with the permanent repair, although there is a much less likelihood of that happening). After seeing how the gel fill has helped him- it almost confirms that the cleft has been present all along and the culprit of 95% of his problems.
- After the procedure, within one week, he gained 7 ounces a day! That is incredible! He is still right on the growth scale where he should be, smack in the middle, and I have him weaned down to one Pediasure a day- and thanks to how wonderful Pediasure tastes he won't drink regular milk, so we have to wean him BACK onto that as well as battle the joys of toddle pickiness and juggle his aversions to foods with his new appetite which makes for long mealtimes and a stressed out mommy by the end of the night- but in the end- I have a happy toddler who is on the road to eating just like all the other toddlers out there!
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