2009 The Year of Total Darkness

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.

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.....................

 

The Beginning of Our Journey

It was February 23, 2008 and it was a typical day. Nothing out of the ordinary until, I saw Haygen fall to the floor. His eyes were rolled back and he was so still. I immediately knew something was wrong. A mother always knows when something isn't right. When he began acting like his self again (it was less than 1 min but it felt like an eternity) I picked him up, grabbed his diaper bag and we headed out the door.  I was just driving not quite sure where I was headed but I knew I wasn't carrying him to a local hospital.
 

 

This picture was taken before February 23, 2008.

We ended up at Arkansas Children's Hospital and after hours of observing him in the ER, they decided to send us home. They said he wasn't walking off balance and nothing looked out of the ordinary but if it happened again to bring him back.  I was FURIOUS!! As a mother, you know when something is just not right. The longer we sat there waiting to get our discharge papers, I kept trying to reflect back to when he fell to see if he had done anything different that morning or if in fact, he did trip over a toy or something but he didn't.  I am sure of it.

 

The doctor and nurse came in with the discharge papers and Haygen fell just like he had fell that morning, but this time the doctor witnessed it. Immediately we were admitted and sent to Nero.  They hooked him up to the video EEG (that was a complete nightmare) its very hard to keep a very active toddler from pulling all the wires off of his head.  He was on the video EEG for over a week.

This pic wasn't taken at ACH but that's how he was hooked up to Video EEG

 

As soon as he was on the video EEG, it was very clear to the neurologist, that he was having seizures.  Both times that he had fell, he was very confident to say that those were drop attacks.  Drop attacks (Atonic Seizures) are a type of seizures that are brief (usually less than 15 seconds) consisting of a brief lapse in muscle tone that are caused by temporary altercations in brain function.

 

We also learned from the video EEG that he was having up to 20-40 seizures a day even while sleeping, it also showed that he was having seizures that were not noticeable.  This started the beginning of all kinds of tests known to mankind trying to figure out what was causing seizures. The test were sent to other hospitals all over the US and the results of each test were NORMAL.  He was put on 3 different medications 2 of which were seizure medications.  We were discharged from the hospital on June 4, 2008 with a diagnosis of epilepsy. We didn't stay at home for long and to be honest everything after that just runs together to me it seems like.  We were always in and out of the ER, doctor offices and hospitals.  I was confused, angry, upset and could not comprehend all of it. 

 

This picture was taken at the hospital in April 2008.

In February 2008, Haygen talked, walked, ran, played, fed his self and all the normal things a toddler is suppose to do.  He met all of his milestones on time if not before. By the end of 2008, Haygen had lost all of his motor skills.  I just couldn't understand WHY. I kept blaming myself that I may have missed the signs but I knew I didn't. The only way I can describe it is like this:  It was like I had 2 babies and I lost one of them and I was grieving for that baby. Its hard to explain but its the worst feeling in the world. The hard part of it all was there was no answer as to why this was happening except for one thing a doctor said to me during those first 4 months at Arkansas Children's Hospital.  When all the tests kept coming back normal one doctor asked me for Haygen's original shot records, I was shocked.  I was not aware of all the controversy surrounding vaccinations, I just knew that you took your children to be vaccinated and that was that. I asked the doctor if he thought this could be caused from his vaccinations and his reply was "I can't rule it out and I can't say that it is" and with the look on his face I knew it was from the vaccinations.  I also found out that you do NOT have to vaccinate your children in the state of Arkansas. There is a wavier that you can sign and your children will still be able to attend school. 

At the end of 2008, Haygen was having 20-100 seizures PER DAY!! Yes I said per DAY, and those were the ones we could see!! When we were at home, I had to keep a log of his seizures and that was what my days consisted of!!! That was absolutely horrible watching your child seize and knowing there was nothing that you could do!! :(

After we were released from the hospital in June, I came home on my lunch break one day and the next thing I knew I was waking up in the hospital. I didn't know my mother, my boss, my sister and had NO CLUE that I had 2 boys!!! After a couple of hours, I finally started remembering things and I remembered having my kids but I couldn't remember putting Zan on the school bus or taking Haygen to daycare. The doctor told me that I had had a seizure and my potassium had bottomed out.  Other than my potassium bottoming out he said that stress played a huge role for the reason I had a seizure. So I couldn't even begin to imagine what my poor baby was going through having that many seizures a day. It nearly killed me just thinking about it!! :(

He is having seizures in this video.

 

2008 was a tough year for all of us but it was nothing compared to 2009, it was filled with many many dark days..........

A Little Background Information

I've been debating whether I should or shouldn't start writing a blog to keep track of our journey. Every angle that I look at it from the Pros always outweigh the Cons. The main reason I chose to start a blog about our journey is perhaps I could bring awareness not only for children with special needs but also to the parents of special needs children and their siblings. Everyday is not only a constant struggle for the child but for the entire family.

Many of you know the beginning of our story, but for those who don't this is just a little background information so that you will have a better understanding on how we got to where we are today.

My name is Michelle and I have 2 of the most beautiful sons in the world. They are truly my heart, soul and the air that I breathe. Their names are Zan and Haygen. I was 2 semesters away from graduating college with a degree in accounting when I was pregnant with Zan. I went to my classes and I worked as long as I could before the doctor put me on COMPLETE bed rest. I have high blood pressure (even before I was pregnant) and keeping it under control wasn't easy even during my 1st and 2nd trimester. The doctor had no choice but to put me on complete bed rest before I was 6 months far along. He also had me to check in the hospital 3 days a week from 8am-?? so I could be monitored just to be on the safe side. It was not fun and after 2 1/2 weeks of doing so they could not get my blood pressure to go down for nothing. It didn't matter if I laid on my left side or right side it didn't help. I was even given magnesium sulfate and to no avail. On February 12, 2002 my nurse called my doctor while in my room and she said its 221/178 (yep that was my blood pressure) she hung up the phone and before I knew it I was being wheeled into surgery for an emergency C-Section. I was 7 1/2 months. It wasn't much longer after that at exactly 4:48PM Zan Ashton Amos made his appearance into this world. I wasn't quite sure what was going on but I overheard my doctor say "The cord is around his neck.....OH no we have a triple" (it was wrapped around his neck 3 times) I kept asking if Zan was ok cause I couldn't hear him or see him, NOTHING. While I was asking all of that Zan had already been taken out of the room because both of his lungs had collapsed.

He was taken by ambulance to a different hospital with neo-natal and FINALLY after 7 very LONG days I was released and able to go see my baby. I never got to see him before he was rushed to neo-natal. That was tough. He did really good while in neo-natal and was released after a month and a half. One thing the doctors couldn't tell me was if he had brain damage because they did not know how long his oxygen had been cut off from the cord. Praise The LORD, 11 years later, he has NO brain damage!!! In fact, you would never believe he was the one who stayed on the oxygen and in neo-natal the longest. I thank God everyday that my doctor made me check in the hospital 2-3 times a week for more than 8 hours a day or I would not have my Zan Man today!!! After everything got back to normal, I returned to college and graduated with a Bachelor of Business Administration in Accounting.

At 4:31PM on July 11, 2006, Haygen Lee Walthall made his way into mine and Zans life. I had blood pressure problems during my pregnancy but this time I knew what to expect and I was able to carry him until 36 weeks. I had to be rushed into surgery again because they were unable to get my BP down and we did not want another scare like we did with Zan. Haygen was born completely normal and was doing great but just for a precaution and with my history he went to another hospital and stayed in the neo-natal for a week. 

 

I couldn't have been happier. I had 2 precious boys wild but precious!! They would run around the house playing hide n seek. Haygen would go holler "Ann" because he couldn't say "Zan" and he would always find Zan in a cabinet!! :)

Then on February 23, 2008, our lives as we knew it changed FOREVER!! Our journey began............