Cleft Palate Appointment

Lydia has a sub mucous cleft and a cleft of the soft palate.  Easiest way to understand is that her uvula, the hang down thing in the back of your mouth, is split.  The split stops before her hard palate starts.  The more complicated way to look at this is that her uvula, soft palate and all the muscle above that we cannot see has to be reconstructed to come together and grow the correct way.  Here is a simple explanation for why the palate needs to be repaired and some good information.

http://www.kidsplastsurg.com/cleft-lip-palate/cleft-palate.cfm

https://uichildrens.org/health-library/cleft-palate-frequently-asked-questions

The procedure is fairly delicate and is done by a plastic surgeon.  They will repair it one of two ways, intravelar veloplasty or double opposing z plasty.  Essentially the first on is a straight repair and the second is a z shaped repair.  Lydia will stay in the hospital a couple of days and then head home for recovery.  She won't be able to put anything in her mouth, no tastes, no toys, no fingers.  Since she is 21 months old, it will require arm boards to keep her arms straight.  Oral fed kids would be on a liquid diet, Lydia's blends will resume as normal which should help with retaining her weight.  

Intravelar Veloplasty

Double Opposing Z Plasty

This is the repair that was originally scheduled for December and was postponed because of weight loss.  Lydia is hovering around the 22 pound mark and needs to keep gaining, but Dr. Goldstein is happy with her progress and gave us the green light for surgery in late spring.  We're hoping for late April but think it might be early May instead.  

This surgery messes with my head and I can't really express why.  It seems weird but I'm almost more "comfortable" with heart surgery.  I know what to expect.  I know what recovery looks like.  The fact that this surgery is inside of her darling little happy mouth, terrifies me.  Not that something will go wrong, but that recovery is going to suck for her.  And, there is nothing I can do about it.  No, I couldn't do anything about the heart surgery either.  I don't know.  I just hate this.  Just one more step in the right direction though.  

What's next?

Soft Palate Repair: Late Spring

Decannulation / no trach: Hopefully Summer

G Tube: No guesses, it's going to be awhile