Test Results and Next Steps

     A few weeks ago Kahsay stayed in the hospital for a 24 hour test to record the severity of his reflux.  He also had a scope of his esophagus and stomach.  These tests were done due to his lack of weight gain and struggle to maintain weight.  He has struggled with severe reflux since we met him.  I was excited to have both of these tests done and hoped it would give us a few answers and help us decide if we should pursue the Nissan and feeding tube.  I was bummed that he had a great day in the hospital.  He had very few reflux moments and did not throw up one time.  As soon as we returned home he threw up 4 times in 48 hours.  UGH!!!  I was not surprised when the GI specialists called to tell us Kahsay's tests came back normal.  Now what?  I prayed for God to give us clear direction and wisdom.    
     A week ago Kahsay had a well child visit with his pediatrician.  His major concern was his weight plateau since October.  Kahsay has weighed between 17 lbs and 18 lbs for 7 months.  His concern was enough for me to realize something needed to be done.  He wanted Kahsay to come in for a weight check in a few weeks.  If he has not gained any weight, He wants us to meet with a surgeon to discuss the Nissan and feeding tube.  The feeding tube sounds like an amazing option for Kahsay.  It would take the pressure and stress off of us constantly worrying that Kahsay is not taking in enough calories per day.  It would eliminate the daily struggle of how to get medication in him due to his diagnosis of dysphagia.  I would still feed him orally the exact same as I do now, but would be able to add extra calories into the feeding tube. With the feeding tube we would also have a nissan.  The nissan is the part that scares me a bit.  There are conflicting opinions about this particular surgery and there are some negative side effects that can happen.  

     I continued to pray for God to give us clear direction.  I just wanted Him to hit me upside the head with an answer I couldn't miss.  I believe His answer has come in a few different ways. 

      First, Kahsay had a really rough few weeks following his test.  He was extremely fussy, and refused his bottle most of the time.  For some reason his over sensitive gag reflex returned full force.  He was getting four molars at the same time and since he refused his bottle was unable to get any pain relief.  Every time I tried to syringe the medication in him he puked.  I realized if we had a feeding tube this would not be a big deal because he could have gotten all his calories even though he refused the bottle.              

     Second, we got an appointment with a doctor that comes to Kenosha (the school system Kahsay receives his therapy from).  This doctor has had 30 years of experience with special needs children and had a child of his own with special needs that past away.  He has worked with children with the same needs and diagnosis as Kahsay.  My therapist said he would spend an hour with us if we wanted.  We could ask him any and every medical question we had and he would advise us and inform us.  Thank you Lord for that opportunity!!!  Our list of questions continues to grow.

     In addition to the GI tests, Kahsay will be having another EEG this Monday to Tuesday,  but this time it will be a 24 hour one.  His episodes have been happening more often and lasting longer.  We just want to have him tested to be sure they are not seizures.  

     This is all for now.  Please pray we have a great meeting with the doctor and his EEG comes back normal.