Decisions, Decisions

Well, it was another busy week.  In addition to therapy, Callie had two doctors' appointments.  The first was with Dr. Im, a physiatrist or doctor of physical medicine.  He specializes in pediatric rehabilitation medicine.  My special mom friends all take their little ones to see him and I was told he is excellent at predicting a child's physical abilities.  At our first appointment with him last March he advised Callie has an "excellent long term motor prognosis".  He felt she will be able to walk and perform independent life skills.  He added it is more difficult to know how she will be cognitively, but we might have a better idea after she is two years old.  This past week at our second visit he was again positive about Callie and was very pleased with her recent growth and development.  He studied her movements as she sat and played with a piece of paper and said she looks very good and typical.  There is nothing abnormal about how she used her hands, for instance.  There is no spasticity, stiffness, etc., she is just very delayed.  This is about as good as we can hope for at this time (besides not being delayed!), so I left feeling good.

Our second doctor's appointment was with Dr. Kim, a pediatric surgeon.  I made the appointment to discuss Callie's g-tube placement.  I recently learned there are two types of g-tube placements.  Here is my limited understanding: The first is a PEG tube.  PEGs are placed endoscopically by a GI doctor with just mild sedation.  Pros include less risk because surgery is not required and it is very unlikely that the tube can be pulled out.  The PEG can also be swapped out for a button after about 3 months and again, this does not require surgery.  The major con seems to be the long tube that sticks out of the abdomen.  It gets in a way and I would be concerned about how this would impact Callie's physical abilities, especially since she is combat crawling now.  The second type of g-tube is a button.  Button placement requires a surgeon and general anesthesia.  The main pro is the button is very low profile to the abdomen and very inconspicuous.  When not hooked up for a feeding, the button does not get in the way or get pulled.  Callie would have no problem with her army crawling.  Luckily the surgery is now laparoscopic, but with any surgery there are plenty of risks and this is the major con.  Also, the button can get pulled out when hooked up for a feeding.  If this happens during the first two weeks or so, it will most like require repeat surgery to get it back in place.  I went into the appointment leaning towards the button, but half way through our conversation I felt we should probably stick to the PEG to minimize risks.  Until Dr. Kim brought up the Nissen procedure.

He noticed Callie's impedance test results were abnormal, meaning she experiences reflux even though it is not acid reflux (because of her Prevacid).  He asked me if she spits up often and I said yes.  I explained I have to carefully plan her therapy sessions around feeding times because if she moves much for at least two hours after she eats she spits up.  This is becoming a big problem now that she is anxious to be mobile and is combat crawling around the house.  There are always spit up messes to clean up.  Dr. Kim went on to say Callie seems to be a good candidate for a Nissen procedure.  This is a surgical procedure that takes the upper part of the stomach and wraps it around the lower end of the esophagus.  Stitches hold it in place and the procedure is permanent (meaning they do not go in and reverse it when she gets older).  When the stomach contracts, it closes off the esophagus instead of squeezing stomach acids into it.  Assuming everything goes as planned, a Nissen would cure Callie's reflux and she could stop taking Prevacid.  Dr. Kim further explained he has seen reflux worsen in kids after they get a g-tube because of how it changes the angle of feeding into the stomach.  It is harder to get the Nissen after a child already has a g-tube so they prefer to do it first if at all possible.  Dr. Kim also said if we opt for the Nissen, then that would make our tube decision because Callie would already be in surgery and he would place the button at that time.  So then I started feeling a Nissen would be beneficial to Callie and we would therefore also opt for the button.  That said, I felt very nervous and uncomfortable about all of the surgical risks, especially surrounding the Nissen.  There are lots of organs in that area and he went over the things that could go wrong.  I left the appointment feeling unsure of how to proceed and disappointed because I was hoping to have a decision made and a date scheduled.  Instead I am going to take a little time to research and get a second opinion from at least Callie's GI doctor.  

This is a tough decision.  Please pray we choose what is best for Callie and that all goes well.