Lawson W. - Quilt Finished in 2006

Born: May 30, 2002

Illness: Recurrent Severe Hypoglycemia, GERD,  G-Tube Fed, Reactive Airway Disease

Lawson W.'s Story

written by mom Kristi

Lawson Chase was born on May 30th, 2002 at a healthy weight of 8 lbs. 2 oz.  He seemed fine at birth except for not being able to keep down his bottles.  He would projectile vomit every bottle he took! He was diagnosed with Reflux before we even took him home.  We fed him small amounts every 2 hours and had him sleep sitting upright in his car seat.  He finally made it back to his birth weight at 3 weeks old.  He started medication for his reflux at 3 months old.  He was hospitalized and diagnosed with reactive airway disease at 4 months old.  We started nebulizer breathing treatments twice a day along with his reflux medications.

At 6 months old, he had his first Hypoglycemic episode with a blood sugar of 22!  He had been vomiting some and not wanting to take his bottle.  Out of fear of him becoming dehydrated, I took him to the emergency room of our local children's hospital.  When we arrived, I noticed he was very lethargic and hard to wake up.  He was basically unresponsive and they were sticking and poking him everywhere trying to get an IV in.  He just laid there sleeping and did not even move or respond to all the needle sticks!  It was probably the scariest moment of my life.  We did not know what was going on.  They admitted him and ran IV glucose and fluids and he started coming around.  Once they got his blood sugar levels back up, he was more back to his self.  They ran many tests and could not give an explanation of why his sugars had dropped.  They started him on Carnitine while we waited for all the labs to come back and sent us home.  After all the lab work came back normal, they told us to stop the Carnitine, as his levels were in the normal range.

To make a long story short, he continued having trouble with the reflux and blood sugars dropping.  For Lawson, it seems that the only time his sugars drop are when he is sick and his body is fighting something.  He has been hospitalized 9 times already, has had 3 surgeries, and too many tests and procedures to count!  He had tubes placed in his ears after having recurrent ear infections.  The tubes seemed to really help with his ear infections.

Due to the severe reflux, he had the Nissen Fundoplication (operation to sew the top of the stomach (fundus) around the esophagus) done in January 2005 to correct the reflux.  He also had a G-tube (Mickey Button) placed for feeding.  He still has the feeding tube and gets most of his nutrition through it at night.  Before the surgery for the reflux, Lawson was taking 10 medications every day.  After the surgery, he was able to come off 7 of those meds.  We were very happy about that.  He has been in feeding therapy for 2 years now.  He also received Occupational Therapy, Speech Therapy, and Developmental Teaching.

We have gone through numerous tests with Genetics and Endocrinology to check for metabolic disorders and still have not come up with any definitive answers.  The Nissen that Lawson had done in January of 2005, made it impossible for him to burp or vomit.  After 8 months of having that under control, he is now able to throw up past the wrap that they made around his esophagus.  The surgeon told us that over time, the wrap will start to loosen up and the child will eventually be able to burp and vomit when they need to, such as a stomach virus.  It is very scary when he gets sick like this because his blood sugars drop and we have to take him to the ER to get IV glucose to keep them up.  Every time he has to be put to sleep for a test or procedure, we have to make sure they give him D10 glucose in his IV to keep his sugars up since he has to be fasting the night before.

We do not know for sure if he has a metabolic disorder or what exactly is causing his sugars to drop.  We do know that we really have to watch him, as the hypoglycemia can be life threatening if it does not get treated in time.  We spent 6 hours in the ER, late September 2005, due to vomiting and Hypoglycemia.  He has been having bad headaches which I think are due to the low blood sugars.  His sleeping patterns are terrible as he is waking up anywhere from 4 to 7 times a night.  He is really having a difficult time with the Hypoglycemia right now.  I just wish they could give us an answer as to what is causing it and how to better manage it.  It is very hard to watch your child go through this and feel so helpless.  I would love to just take it all away for him.

Despite all he has been through, he still manages to have a great attitude and smile even during the bad times.  His wonderful spirit is what keeps me going most days!  I thank God every day for trusting us with such a special gift!

Written by Lawson's mom Kristi in December 2005