Searching For Answers........

Although I was on the verge of a serious nervous breakdown after that hospital stay in July 2009, I never gave up HOPE!!

I decided that me and the boys were gonna make the BEST of everyday!!! And that's exactly what
we've done and we still do. We no longer take the little things for granted, like a hug or a kiss or the simple sound of your child saying Moma, or even simply holding your child's hand while walking because all those things can be taken away in ONE second and they were taken from us!! Why? We didn't have a clue but we were determined to enjoy EVERYDAY because we aren't promised tomorrow.

We had several more scares with his seizures since the week long hospital stay in 2009. I had been researching and reading everything I could find on Lennox Gastaut Syndrome (LGS)  But then I started noticing his diapers were dry in the mornings after he woke up and the daycare said he was using it very little during the day. I had an appointment with his new neurologist at Arkansas Children's Hospital (ACH) the following day, he wasn't crying or fussing like it was bothering him at that time so I decided not to carry him to the doctor that day since we were going to ACH the next day. We go to our appointment and the doctor asked if he had been having any other problems, so I told him about Haygen's diapers being dry a lot and his EXACT words were "I'm not a pee doctor!!"  From that moment on, I did not like him!! Of course I knew he wasn't a "pee" doctor but we were at the #1 hospital around and I'm pretty sure there was a "pee" doctor there. We were sent to our regular doctor for that and luckily they were able to see Haygen that same day and was treated for Urinary Tract Infection (UTI).

 

           (These are the scratches)

Later that same night I carried him to our local ER because he had been screaming and clawing his stomach, they immediately sent him by ambulance to ACH. We stayed there and waited for hours and were sent home. They did nothing for him. This happened 2 or 3 more times in the same week and ACH always sent him home without even cathing him. When he scratched his stomach so bad that he was drawing blood and he was rushed by ambulance again to ACH, I refused to leave until they would cath him and tell me what was happening. But while in the ambulance his oxygen level was going down and was put on oxygen. ACH did finally cath him and they got 2-3 diapers full. During that time, they noticed his heart rate was also going down as well as his oxygen. The heart doctor was called in and lots of test were being ran to figure out why his kidneys were shutting down and everything else!! After a couple of days, the heart doctor discovered that Haygen's VNS settings were set way too high. Of course Haygen's neurologist refused to believe he was wrong so the heart doctor adjusted the settings.

(This is actually the night I said I wasn't leaving!! You can't tell he's sick because he was laughing!! )

I started the internet search immediately after that night for a specialist that dealt with these amount of seizures daily and the diagnosis of LGS (Lennox Gastaut Syndrome).  I found LeBonheur Children's Hospital in Memphis. I emailed the hospital explained Haygen's situation and I was immediately contacted. They wanted to meet Haygen, but not for a visit, they wanted him for a whole week. It was scheduled for April 2010.