Welcome to tokoni

TJ was born on Sept. 18, 2004.  It was a completely normal pregnancy but something went wrong during the delivery & TJ lost oxygen for as long as 6 minutes. He was born during Hurricane Ivan & even though we here in PA did not receive the full brunt of the storm, we had strong winds & heavy rains making it impossible for LifeFlight to transport him. By the time he arrived at the other hospital with more equipment to better care for him, his left lung was collapsed because someone had intebated him wrong & the tube was only in his right lung. After CT scans & EEG's, we were told of the severity of his brain damage. The only part of his brain that works is his brain stem, the rest of it is basically dead.  My husband & I had to make the decision to take him off of the respirator with the knowledge that he would only live MAYBE an hour because he could not breathe on his own.  When he was finally discharged 11 days later, it was with a prognosis of "imminent death."  That was 4 1/2 years ago.  Since then he has been evaluated by a battery of specialists with all of them saying the same thing, "all we can do is to keep him comfortable & if he lives to be a teenager, we'll be lucky."

In 2006, TJ had surgery at Children's Hospital in Pittsburgh, PA to have a feeding tube placed because one of the tests done at Children's showed that he was silently aspirating everything he was given by mouth. He came through that surgery with flying colors.  In August, 2008 he had two more surgeries done at the same time. His feeding tube was replaced with a mickee button & his adenoids were removed because they were enlarged to the point that he had 100% blockage. He spent three days in the I.C.U. & then another two weeks in a regular room because he had developed pneumonia. (now Children's is approximately 60 miles west of here & we also have two smaller children, Sonya, now 3 & Hunter, now 2).  So everyday while TJ's dad went to work to support his family & keep the health insurance up, I drove to Children's to spend the day with TJ.  Without the help of my mom, my aunt & my sister, I don't how I would have made it through those two weeks. While he was there, he was under the care of a gastroenterologist, a neurologist, a cardiologist, a pulmonary specialist & the ear, nose, throat specialist. They did another CT scan & a 12 hr video EEG (which meant that I had to stay overnight with him), These tests showed the same as the other ones did years ago.  He was discharged with 24/7 oxygen & a round the clock pulse/ox moniter which he will have to wear for the rest of his life. He also has to have breathing treatments & chest therapy every day. (chest therapy consists of pounding on his back & chest for two minutes to keep junk from building up in his lungs.)

At the end of 2007, he received a large settlement which I am not allowed to go into details about for legal reasons. Last May, he was chosen as a "Wish Kid" through the Make*A*Wish organization. We chose the shopping spree for him because a trip, a pool, or a hot tub would not be good for a child like him. We ordered a lot of therapy equipment for here at home & he got a lot of clothes to grow into. In July, 2008, we were finally able to purchase a Toyota Sienna Braun Rampvan to take him to his many, many appointments.  

We do not have a nurse for him because the insurance doesn't cover it & we don't feel that we need one yet. Hopefully, sometime this year, we will be able to remodel our house & add on the rooms necessary for him. We will have to revamp our existing bathroom to fit his wheelchair into the shower & add two rooms on. (one for his therapy & equipment & a bigger bedroom for him & when it becomes necessary, a nurse.) We will have a track system installed in the ceiling of those rooms so I won't have to lift him as much as he gets bigger.

Okay, what else is there to say?  My husband & I have already accepted the fact that some day we WILL have to bury our own child but that's okay. TJ has already lived years longer than he was supposed to. The one thing that really makes my day is TJ's smile.  When he is comfy, he will get a small, half-smile on his face. Sometimes I envy him because he will never have to worry about anything. He will never have to worry over job security, taxes, his children or his future. HE WILL BE AN ANGEL SOONER THAN MOST OF US, because he will never have an unkind word or thought about anybody.  Yes, there have been many times that I have cried my eyes out because I know there is nothing that can be done to make him better. My husband has relatives who say we are not doing enough for TJ & yet we can't depend on those relatives for any help whatsoever in any way. Anybody who is a parent knows that parents are supposed to make everything better but I can't do anything for him. I see stories on the news of normal, healthy children who have been abused & neglected & it makes me very angry because those parents are destroying their own children.  My husband & I would give our lives to see TJ do anything purposeful.  He sometimes screams throughout the night because he is uncomfortable but he HAS to be in the sidelyer.  There is no medical miracle for brain damage but as long as TJ is alive & as long as we are alive, he WILL have everything he needs to be comfortable.

I know this e-mail is kind of long & I know there are probably many things that I have left out. I just want everyone to know that these special children are not freaks to be ignored, pointed at, laughed at or whispered about. Their parents are doing the impossible job of caring for a very special gift & for every parent of a special child, I commend you & your family. No matter what others say, YOU ARE DOING A GREAT JOB OF CARING FOR YOUR SPECIAL GIFT FROM HEAVEN.  Always be strong & don't let naysayer get to you, because until one has a special child of their own, they do not know just how emotionally & financially stressful it can be.

My Love To All Of You!!!!!!

STAY STRONG!!!!