Every Generation Has A Legend. Every Journey Has A First Step. Every Saga Has A Beginning.

Friday, March 25, 2011

Every Saga Has A Beginning.

So, from 2003 to 2005 it was difficult but par for the course for special needs children. When he was 9 months old my husband had to beg his PCP to do a CT scan because he was crying constantly, holding his head or sleeping for 15 hrs out of the day. Finally she came back with a referral to a neurosurgeon. Said he had a severe case of hydrocephalus. Our neurologist argued with us and said she was the dr and we didn't know anything. We decided to go behind her back and go to the neurosurgeon. He told us we had 1 day to get the surgery to put a VP shunt in. The hydrocephalus was preventing Perrin from sitting or even crawling on his own. We had the surgery done in Oct of 2003. The day after surgery, he was sitting up and playing. It was the happiest I had seen him in A LONG TIME! After that, he had a circumcision, because the skin was growing around the urethra, therapies, got weaned off oxygen and phenobarbital at a year and a half old. At 2, he was diagnosed with Cerebral Palsy. The neurologist at Children's Hospital in New Orleans attributed it to the Grade IV brain bleed and the hypoxia at 2 days old. In August 26, 2005, we were set to have a nissen re-do and a hiatal hernia stitch up. The day of surgery he woke up with a 104.5 degree fever, therefore canceling surgery. Later we would see this as divine intervention. On August 28, 2005 we were ordered to evacuate New Orleans due to Hurricane Katrina. Had he had the surgery, he would have been in PICU during Katrina and had to have been air evac'ed out. WHEW! We ended up in Branson, MO for 6 months. In Dec 2005 He had the Nissen Redo and Hiatal Hernia surgery in Springfield, MO. We then went down to San Antonio for a titanium rib evaluation. His rib are malformed but luckily it is seen as "just a cosmetic issue" Since they wanted to re-eval him in a year, we decided to move to TX. My inlaws lived in Austin so we figured it would be nice for him to be near his grandparents. We settled in Round Rock and he started PPCD (preschool program for children w disablities) thru the public school. As he went thru the years, he continued to progress and by Kindergarten, he was mainstreamed with aides, resource and therapies. By 2nd grade, he had a great group of friends. A couple of the parents in class have likened him to Norm from Cheers. When he walks into class everyone screams out "PERRIN!!!" It is great to hear how much his classmates love him and look past his differences. By Thanksgiving of 08, he was starting to regress and have mood changes. We did a CT scan and it showed that his shunt was clogged up. He needed yet another surgery. We were unsure as to if it was just the tubing in his belly that needed replacing or if it was the tubing in his brain as well. Dec 17 he had his shunt revision. The neurosurgeon said that everything was fine. She had to replace the whole system because it was completely clogged up with protein. The next day he was MISERABLE! He could barely sit up, when he did he gagged and he was refusing to eat. 2 day later, he was eating (not much) and the neurosurgeon said we were to be discharged. I objected because he wasn't drinking or eating and he was still gagged a lot. He couldn't handle the pressure of his brain. She reprogrammed his shunt and let him stay one more day. Next day she said he needed to go home. Once again, I protested. He was still refusing to eat and was only drinking enough to stay hydrated. She said he had to get used to the pressure (said that was why he was gagging every time he sat up) and the only way to get him to eat was to force him at home where there were no IVs for hydration. So we went home. The entire trip hm, 45 mins, he gagged. We went back to the dr 3 days later. He had stopped gagging and had slowly starting eating and drinking again. She said he could return to school the following week. He went back and on Monday, Tuesday and Wednesday he was going to the nurse's office. He was having bad headaches and was nauseous. I brought him into the ER and the neurosurgeon came in and tapped his shunt. It wasn't draining, which meant it was malfunctioning and needed to have emergency surgery to pull the catheter back through his brain as there were not enough holes in the ventricles to drain the fluid. Also, there was a leak in the cap of the reservoir, so that would need to be replaced. He was in surgery for about and hr and a half then wheeled up to his room, looking better than the first time!!! This time the surgery was perfect. He went home and was functioning great.

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