Thursday, April 19, 2012

The techie stuff and frequently asked questions

What is a fundoplication and why does Kaylee need it?

In the context of Kaylee, a fundoplication is a surgery to prevent reflux.  The valve where Kaylee's stomach and oesophagus join does not work very well..  Even though no food goes into Kaylee's stomach, she still almost always has gastric juices travelling up - and occasionally out - where they shouldn't.  This is called severe Gastro-Oesophageal Reflux Disease. Two things make Kaylee a candidate for this surgery.  The first is that her reflux is extreme.  The simple act of laying flat on the floor or having food in her stomach will likely cause here extreme discomfort and put her at risk of aspirating (breathing in vomit).  Vomit in the lungs is not great.   It effectively starts digesting the lungs.  A lot of it could cause pneumonia and irreversible damage to the lungs - thankfully this hasn't happened yet.  In small amounts (which Kaylee has almost certainly got happening every day) it can start to damage and break down lung tissue, raising the likelihood of lung disease and long term issues such as asthma, lung infections, pneumonia etc.  Long term reflux can also do some pretty serious damage to the oesophagus, teeth and general health and well being.  The second thing that makes Kaylee a candidate for this surgery is the fact that she has Cornelia De Lange Syndrome.  Unlike most typical babies who suffer from severe reflux, most people who have this syndrome do not grow out of their severe reflux.  Of all the issues associated with this syndrome, reflux is one of the most common and one of the most life altering of them all.  Because of her reflux Kaylee cannot do many of the things that other babies her age do (tummy time, rolling around the floor etc.).  Her reflux is also why she is fed using a naso-jejunal tube which I pretty much hate with a passion.

The surgery itself involves taking the top part of the stomach and wrapping it behind and accross in front of where the oesophagus joins the stomach and stitching it in place so the stomach effectively wraps around the oesophagus.  This closes up the opening somewhat and prevents reflux.  Kaylee should be able to have food in her stomach without fear of aspirating.  She should still be able to swallow and I believe this surgery will better her chances of learning to eat "normally".  It is a tough recovery, by all reports, and the week or so following is likely to be very un-fun however I will not be listening to her cough and wondering if she has aspirated or suctioning out her nose every ten to twenty minutes as she vomits on and off from 5am - 7am anymore.

What is a gastronomy and why does Kaylee need it?

All her life Kaylee has been fed using a feeding tube of some sort.  Currently she is fed via an NJ tube.  I go more into the details of this here, but basically it is a tube that goes through her nose, down her throat and through her stomach into her small intestines. A tube through the nose brings its own set of problems.  And it is a pretty long list actually.  Everything from the trauma of pulling tubes and having to have them reinserted (try shoving something up your nose and down your throat while you gag and vomit....Yeah, that would be one of the problems) to issues of tape irritating skin etc.  Kaylee is unlikely to start feeding orally in the very near future.  Not enough to sustain her anyway.  There are a lot of hurdles to cross before she will be taking in all her fluids, food and medication orally and there is no way to predict how long this will take or even IF she ever will take in enough food and drink through her mouth to sustain her.  So this surgery will make a hole through the wall of the tummy into the stomach which we will insert a feeding tube into.  It will sort of heal and form a hole we can put tubes in and out of the same way an ear piercing heals and earrings can be taken in and out painlessly.  It will also be used to help her "burp" if the fundoplication is too tight and she has trouble burping up air.  While a tummy tube does have its own list of issues, the list is much shorter than the list of negatives that goes with nasal tubes.  Without a tube, Kaylee would not survive.  A tummy tube has the fewest negatives and the most positives.  We are getting the tummy tube.  A nice added side bonus is the fact that Kaylee will no longer have anything taped to her face and we will be able to fly under the radar a little more and I will be able to kiss both those chubby cheeks without fear of dislodging anything.

When will it happen?
Whenever we get her healthy from this cold and they have a gap in the surgery schedule.  We are thinking a couple of weeks at this stage

What are you going to do in the meantime?
We are currently staying with friends in the Melbourne area.  While I have no desire whatsoever to move permanently away from Tassie,  it is a good feeling to be so close to one of the top paediatric hospitals in the world at the moment.  Staying here with our friends has also been a time of rest and healing for us.  Simply knowing that if we need to take Kaylee to hospital, there is someone RIGHT HERE to watch the others is a great weight off our shoulders.  Bek and Shane have been our friends so long they are family and we have been blessed SO much by their hospitality.  We are re-evaluating as we go and after the tummy surgery is done we will make a decision about having the cleft surgery done here or going home to Tassie for that one.  We are taking advantage of the zoos, museums etc. while we are here (when the kids are up to it!) and having a bit of a holiday in between surgeries.  The kids have their school work with them and we believe it is better for them to be settled and all of us to be near each other than to pack all of us around to the different hospitals or have Kaylee and I leave for days and weeks at a time at random intervals.  Home really is where the herd is!


Sheree C said...

My thoughts and prayers are with you and all the family.

DaughterofEve said...

Good to hear from you again Jess. I was beginning to worry.

Thanks for explaining the above. I all helps to understand your journey better.

Peace and strength to you and yours.

Bek Ross said...

"Home is where the herd is" is one of the wall hangings that I haven't seen for a decade that Jess has uncovered in her crazy "box-unpacking-frenzy" and I love seeing it again, along with books and trinkets that I haven't seen for a long time. WE have never been this unpacked before. Thanks Jess.