Today is a new day!

Well today could be the start of a new way of life for Miss Sofia.  In one of our recent visits to her GI doctor she did one of her 'backups' in front of the doctor!  Now many of you have seen Sofia have one of her backup episodes, but for those of you who havent' seen it is basically looks like she is choking and there is really nothing we can do to help her or stop it.  We basically have to sit with her and let her know she isn't alone.  Once the episode reaches an end she usually coughs up a bunch of yucky stuff and I can usually suck it our with suction...this is something that happens several times a day to Sofia :(

Now the importance of her actually doing this IN FRONT of her doctor is HUGE!  I have been telling them for about 2 years what goes on and I have captured it on video and showed them...but really until they see it live and in person it is really hard for them to know A. what it is and B. what to do to fix it.

Well ladies and gentleman we finally have a possible solution...her doctor thinks that the specific type of feeding tube she has, which is called a GJ tube, is creating an obstruction from her stomach to her intestine.  I will post some pictures so you can get a better idea of what I am talking about in a bit.  Sofia has what they call a tubal stomach and it is much smaller than the average stomach of a 4 1/2 year old.  These 2 things combined with a GJ tube placed are a bad combo...the size of the actual tube basically is taking up the opening from the stomach to the intestine making it so her bodies natural secretions have no where else to go but out her mouth or out the farrel valve bag we use to vent her...sorry for using technical terms but again I will post pictures below so some of this makes more sense to those who haven't seen it.  So the doctors solution is to remove the GJ tube and replace it with a J tube.

The one thing that I am worried about is we have had a J tube before and it didn't work because we need to be able to have access to her stomach (G tube) to vent her.  The reason we need to vent her is because she had a procedure called a fundoplication or nissen done that tightens the esophageal opening to the stomach, which keeps her from being able to throw up...but it also makes it hard for her to burp.  The farrell valve bag allows the secretions and gas to exit her stomach into a bag that I change out daily.  Without access to her stomach the gas could build up and have no where to go, cause her major pain and also put stress on the nissen causing it to loosen...BUT...if the doctors theory is correct once the GJ tube is pulled and J tube is placed there should be enough room for the secretions to move through her intestine and we won't need to vent her!  Amazing right?!?!?  Yes.  For the last 2 years we have had to have this farrell valve bag attached to Sofia 24/7...if we don't need it anymore I will surely be doing the happy dance!

Now IF the J tube works as far as taking care of the secretions but not the gas then the next option is for her to have a surgery (yes another one) so that the J tube goes directly into the intestine and we can use the G tube to vent her...now this is the worst case scenario (and really isn't that bad in my opinion) and even if we have to do this the farrell valve bag will be used just when she needs it and not 24/7...hopefully.

So we have a lot riding on this procedure today...please keep your fingers (and toes) crossed that this is the beginning of something new and great for Sofia...after all she completely deserves it!

One a side not the infection we were treating with IV antibiotics is 100% gone!  Yahoo!

Well that is all for now.  I will keep you all posted as to how the day goes...I think we will know pretty quick if the procedure works or not!  We check in for an outpatient procedure at 9am this morning...wish us luck!

Fundoplication or Nissen.

GJ tube

                                                                           G Tube

Farrell Valve Bag