As I said in my last post, 2008 was a tough year for us but it sure didn't prepare us for the struggle we were about to face in 2009. You know that saying "OMGOSH can things get any worse?!?" The answer is always YES, YES THEY CAN!!! So if you make it through whatever it was that made you ask that question, just thank God for giving you strength to get you through it. I have changed a lot since February 23, 2008, and I've found out more about myself since then than I have my all life. I will elaborate more on that a little later.
Haygen had continued having 20-100 seizures per day and at the last doctors appointment he was scheduled for surgery to have a VNS implanted near his heart. The surgery was scheduled for February 25, 2009, almost a year to the day that all of this began. A VNS (Vagus nerve stimulation) is a technique used to treat epilepsy. It involves implanting a pacemaker-like device that generates pulses of electricity to stimulate the vagus nerve. This little device is a Godsend!! It truly is and technology is absolutely amazing. It didn't completely stop the seizures however, it did lower the number of the seizures he was having everyday. But there were some days that it didn't help at all. It takes a while and its more like trial and error to get the settings of the VNS to where they need to be.
The VNS was helping Haygen with his seizures but he was still on the meds and by this time the dosage had increased several times since the beginning. He was still having all types of seizures not just one certain type. There was still lots of ER trips, lots of doctors appointments and lots of sleepless nights. My ZanMan was doing good in school considering all of this and he was enjoying every sport that the YMCA offered and Haygen was right there at every practice and every game (unless we were in the hospital). Zan loves Haygen more than life itself and you can clearly see it in his actions. When it comes to Haygen, he is like the Big Bad Wolf. He will protect him and make sure he is ok. At his Christmas school program, one of his classmates saw Haygen and asked Zan "Why don't your brother just die??" when they were behind stage. I didn't know about it until he told me when we got in the vehicle. I could barely understand him because he was crying so hard. He said, "Moma, they just don't love Haygen like we do and they don't understand that he has feelings too!!" My heart was hurting because at that moment Zan saw the world in a total different light. The next morning I called the school (not to fuss or get anyone in trouble) to tell them what had happened so that maybe they could talk to Zan's classmate and explain to them about his little brother. Its wasn't the child's fault at all they just probably had never been around any special needs children. There's many children and adults that have never been around those with disabilities or special needs and that's why I chose to write this blog to maybe help educate others about them. After I spoke with the school, Zan's teacher asked if I would mind bringing Haygen to Zan's class so that everyone could meet him and see how precious and special he is to me and Zan. Of course I said yes and the whole class just loved him. Zan has never had anyone else to say anything like that to him again. In fact, I think he's had several to ask where Haygen was if he wasn't with me at the school!! :)
A couple of months had passed since the surgery for the VNS and there had been a little improvement with the seizures but he continued having them everyday. He was not getting any better with the medicines that he was on, so his neurologist wanted to put him in the hospital for a week if not longer. He wanted to run more tests and observe him more closely because by this time Haygen could no longer walk, talk, sit up, hold his head up, hold his bottle or anything. It was like he had literally became a little vegetable overnight. The doctor scheduled it for the week of July 20-24, 2009 but wanted me to come in to his office a week or maybe 2 weeks before so we could discuss the tests and what they were going to be looking for during that week.
We went to his office the week before and he told me he would not be there when Haygen was going to have all the tests ran. He was moving to Texas because he took a position there to help with children but would be back in a year. He said I had a great doctor that was taking his place and that he had already briefed him about Haygen. I didn't want him to leave but I understood. He was going to help with some program that Texas has for children and they needed doctors that were willing to come work for free and be involved with research (I can't remember all the details) and I truly admired Haygen's doctor and not just because of that but because he truly cared for each of his patients. To him Haygen was a "mystery" baby and he hated to leave Arkansas Children's Hospital but he felt like this was something he needed to do. I feel like he would have never stopped searching for the answers for Haygen. We sure do miss him cause he was the BEST!!
We got settled in at the hospital and a few hours later we met the new neurologist for the first time, he was from Texas. It was odd that our doctor left for Texas and was replaced by a doctor from Texas. He seemed nice. He explained to me again about all the tests and said hopefully we would have answers before we left. A few of the tests results had a came back within a couple of days and of course they were normal but on the 3rd day the doctor came in and told me that Haygen had Lennox Gastaut Syndrome or LGS. LGS is a difficult to treat form of childhood-onset epilepsy that most often appears between the second and sixth year of life, and is characterized by frequent seizures and different seizure types; it is often accompanied by developmental delay and psychological and behavioral problems.
Then on the 5th day the doctor said that Haygen was never going to walk again and someone would be there later to measure him for a wheelchair. I started crying but I wasn't hysterical because deep down I had known for awhile that he would eventually be put in a wheelchair and I had already accepted that but it was just that everything was happening so fast. They weren't quite finished measuring him before someone came from optometry to take him down for his vision tests. As we finished with the tests, the doctor said "he can not tell if the light is on or off" and I just looked at him and he calmly said "Your baby is blind!!" I don't remember exactly what I did at that moment but I remember him leaving the room and it was a little while before he came back. When he finally came back he brought another specialist with him that ran the tests again and told me the same thing as he had but added that Haygen would NEVER see again. I do believe I had everyone that was in that hospital at that moment crying, even the doctors. It was BAD or I guess I should say that I was bad. My baby being in a wheelchair, I had already accepted but the thought of him being in a wheelchair AND blind was way too much for me to handle in ONE DAY.
We got settled in at the hospital and a few hours later we met the new neurologist for the first time, he was from Texas. It was odd that our doctor left for Texas and was replaced by a doctor from Texas. He seemed nice. He explained to me again about all the tests and said hopefully we would have answers before we left. A few of the tests results had a came back within a couple of days and of course they were normal but on the 3rd day the doctor came in and told me that Haygen had Lennox Gastaut Syndrome or LGS. LGS is a difficult to treat form of childhood-onset epilepsy that most often appears between the second and sixth year of life, and is characterized by frequent seizures and different seizure types; it is often accompanied by developmental delay and psychological and behavioral problems.
Then on the 5th day the doctor said that Haygen was never going to walk again and someone would be there later to measure him for a wheelchair. I started crying but I wasn't hysterical because deep down I had known for awhile that he would eventually be put in a wheelchair and I had already accepted that but it was just that everything was happening so fast. They weren't quite finished measuring him before someone came from optometry to take him down for his vision tests. As we finished with the tests, the doctor said "he can not tell if the light is on or off" and I just looked at him and he calmly said "Your baby is blind!!" I don't remember exactly what I did at that moment but I remember him leaving the room and it was a little while before he came back. When he finally came back he brought another specialist with him that ran the tests again and told me the same thing as he had but added that Haygen would NEVER see again. I do believe I had everyone that was in that hospital at that moment crying, even the doctors. It was BAD or I guess I should say that I was bad. My baby being in a wheelchair, I had already accepted but the thought of him being in a wheelchair AND blind was way too much for me to handle in ONE DAY.
After things had settled down a bit, the doctor came in and said that he was releasing Haygen that day because every test that could be ran has been done except one and he was scheduled for it right then. He said he would have all the discharge papers ready for me to sign when he was finished with the test. I asked what it was for and he said "His hearing" I said NO WAY ABSOLUTELY NOT!! You are not going to test his hearing and then tell me he can't hear NO WAY NO SIR!! You can schedule that test for later. We were discharged that evening and Haygen did not have his hearing tested before we left. I know I couldn't have handled it if they had told me that my baby was deaf on top of everything else that day.
After we were home, I think that was the darkest time of my life, knowing Haygen would never walk again, never see again and not to mention the horrible seizures he was having 24/7 was almost to much for me to handle. It was a NIGHTMARE that never ended and couldn't wake up from but I also had to remain strong for Zan. I never told him that his Bubba couldn't see, I just said that his Bubba was sick and left it at that.
There were many more trips to the ER after that hospital stay mainly because of the seizures and the severity of them. But then he began not being able to use the bathroom, his diapers were always dry after all day and during the night. This was the beginning of our transition to Memphis.....................
