Saturday, March 29, 2014

Update on K's Vocal nerve reinnervation surgyer

Kaitlyn was released this morning from the hospital and had a ton of energy (so we tried to get out for a bit to go to the natural history museum, but that lasted for about 20 minutes and we came back home to the hotel).

Kaitlyn is one amazing little trooper and we are so proud of her. She’s in good spirits but tired.

She had a rough afternoon yesterday in recovery yesterday, vomiting and such, but by early evening, she finally kept food down and had a good night of sleep.  She was released around 10am this morning after her surgeon came by and said again she did great.

I have to say Brian and I are fairly exhausted, just from the stress of it all, especially leading up to it.  Kaitlyn doesn’t remember much going in to the surgery (thankful to the Versed (sp?) she had) which was especially great as she didn’t get to see her parents  trying to fight away the tears as we said good by to her at the operating room door.

The hospital here in Utah (University of Utah Children’s Hospital) has been amazing as well as the university hotel just around the corner from the hotel.. We only have the best things to say about our experience overall.   And we just love our surgeon Dr Marshall Smith, we were so happy we made the trip here.  He really is a pioneer in this field and has led the way for this procedure.  One of the ENT doctors from Stanford flew out to observe as well.

She’s still quite tired and in some pain (especially with eating and swallowing), but she is just getting Ibuprofen for the pain  (we have something stronger, but our little trooper is doing ok). 

We don’t hear any difference in her voice now, but that’s to be expected. The nerve that was connected to her non-functioning vocal cord will take some time to start generating impulses. Keep in mind this surgery will not give her a fully functioning cord again, as that nerve was severed when her heart surgery was done.  The hope is that her vocal cord wills start to “bulk up” as her brain and impulses start to try to control it.   It will not start functioning again.  But all that is needed is to close the open gap when her functioning cord tries to meet the non-moveable cord.  It could be 4 months till we notice any improvement, and then it could continue to improve for up to a year.

Thanks everyone for your well wishes on Facebook and texts as well.

Monday, March 24, 2014

Reinnveration of Vocal Cord nere from PDA ligaton

Brian, Kaitlyn (who is now 8 years old) and I are flying to Utah on Thursday next week to have a surgery done on Kaitlyn’s vocal cords (as well as have her adenoids removed).  Unfortunately this surgery was supposed to have been done within 7 years of injury (Kaitlyn is now 8).  I heard of it from a friend of mine back east who had it done on her daughter with great success (at age 7).  I had to fight my insurance for 3 months for them to approve us going to Utah, but I prevailed and we are heading out next week.

 Here is a link to a medical article published by the doctor we are going to on the procedure:
It is called a vocal cord nerve reinnervation.  It's ben shown that at least 35% of PDA ligations are resulting in paralyzed left vocal cords. I'm hoping that other parents will look into this procedure for their children as it has been shown it works better if this procedure is done within 7 years of injury.  (Kaitlyn is over 8, but I only just heard of it).

The surgery is Friday morning…

Thankfully it’s a low risk procedure and Kaitlyn should only be in the hospital one night.