Friday, May 24, 2013

Surgery and Seizures

With the recommendation of the pediatric surgeon and our own knowledge of what is best for Kahsay we have decided to have the nissen and g tube surgery.  He said with a child who has seizures and neurological damage his puking could get worse.  It is scheduled for June 5.  He will be in the hospital for about 3 days.  The doctor explained the g tube surgery similar to piercing an ear.  He said it literally takes 10 minutes and is a simple procedure.  The nissen is more complex.  The surgeon we spoke with said he prefers to make an incision and have a better look at the stomach.  He will have a better handle on how tight to tie the esophagus and it is less likely it will have to be done a second time.  There is an option for a laparoscopic  procedure but this is used most of the time for adults.  It can be used in children and is less invasive but I like the idea of the doctor having the best look possible.
I never thought I would be so excited to have my child go under the knife.  Kahsay just had a coughing, puking week.  Jason and I both said it was the best confirmation we could have asked for.  He also was weighed and still did not hit the 18 lb. mark.  My poor little buddy needs to get some chub on his bones.  He needs to be able to laugh, sneeze, and cough without puking.
We are still working on the correct dose of medication for his seizures.  He is still having them but we have seen less.  The side effects of the medication have been minimal.  I am thankful for that.  He couldn't get into the hospital for a video EEG until August.  We are on the waiting list but we are a bit frustrated that we will need to wait that long before we really know how often Kahsay is having seizures, besides the ones we see physical signs of. He has had a few REALLY good days.  He has been content, smiley, playful, and alert.  I am hoping this is all because the medication is working on those seizures.
Thanks for your words of encouragement and commitment to lift us up on prayer.   It gives us strength and  gets us through the difficult days.  

Thursday, May 16, 2013

Bittersweet Decisions

The past few weeks have been a bit overwhelming but at the same time a step in the right direction.  As I wrote in my previous post we were meeting with a doctor to ask questions about the feeding tube and nissen (sorry spelled in wrong in my previous post) surgery.  He agreed with us that the nissen and feeding tube were definitely necessary for Kahsay.
    These two surgeries will help Kahsay gain and maintain weight which will only benefit his development.  I am ready to take this step but at the same time for me it was hard to get past thinking it REALLY meant Kahsay was a special needs child.  Let's be honest he was a special needs child before these surgeries, but I think I was in denial. I had these hopes that his development would "catch up" and he would be completely normal.   I also know it means it will be more difficult to have random people care for Kahsay.  We already have a few select people who watch him, and now it will be even harder.
      On a positive note,  I am excited that I won't be called home by the babysitter because Kahsay puked all over his bed.  After having the nissen surgery he will not be able to throw up.  I am so excited to be able to give him his medications through the feeding tube.  He is HORRIBLE at taking his meds due to his dysphagia.  I am so ready to have peace of mind that he had a sufficient amount of calories at the end of the day.  These benefits far outweigh the labels that scare me.
   We are scheduled for a consultation with the surgeon next week Wednesday.  I am praying all our questions are answered and we do not question are decision to do this.
    In addition to preparing for these procedures, I received a call today with the results of Kahsay's 24 hour EEG he had last week.  It confirmed that he was having numerous seizures a day.  More than I am even aware of.   I am so thankful for a friend who encouraged me to follow my mommy instincts and have him tested.  We did have an EEG for Kahsay in the fall, but it was only 30 minutes.  I had noticed the episodes becoming more frequent, longer, and more intense.
     We are told he is having two different types of seizures.  One of types is caused by only one part of the brain.  These types of seizures are not as noticeable because the physical effects are not as apparent.  While these are not as noticeable they are still bad.  The other type of seizure is caused by the entire brain.  These are the ones I see physical signs of.  Both types can cause cognitive delay, tiredness, lack of awareness, sensory issues, etc.  The nurse explained to me that every time he has a seizure his brain has to reboot.  If he is having numerous per day is poor brain is constantly rebooting.
     He is being put on a medication to try to control them.  It is all trial and error as to what type of medication and what dose will work.  He is going to be scheduled to have a 24 hour video EEG at the children's hospital so they can really see what happens during his seizures.  It will better equip us so we know    when he is having them.
    While I dreaded hearing my son is having seizures, that will most likely get worse as he develops,  I also am so thankful to have caught them.  I am thankful for another answer that will help get Kahsay on the right track to be able to develop to the best of his abilities.  I guess I can say it was a bittersweet week.

Saturday, May 4, 2013

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.