Hi, I am Isaac, better known as Bubba. I love to laugh and play and chase cats and tease my sisters and yell... I REALLY like to yell!!. I've had a hard life, but I'm one of the happiest people you could ever meet. I know, most people have hard lives, but let me tell you a little about mine. I just couldn't wait to see this world, and I was born two months early with complications. Immediately after birth, the nurses took me away from mommy and daddy and hooked me up to all kinds of machines because my lungs just weren't ready yet. They tried this and they tried that and then they collapsed my lung. Once the small town hospital figured out that they couldn't do anything for me, I was flown to Children's National Medical Center in Washington DC where they took great care of me and probably saved my life. Yeah, I had to be hooked up to all kinds of machines and that was probably very uncomfortable, but I was sedated so I didn't feel much of anything. It took a few weeks, but gradually they were able to reduce my dependency of the ventilator and once that nasty tube was removed from my throat, they were able to reduce the morphine.
One day I woke up and I could breathe all by myself, but I had this thing in my nose, a NG tube for feeding. I took some food from the bottle, but it hurt due to my reflux, so I didn't really eat very much by mouth and I had to get food through the NG tube for a while. I met all kinds of wonderful doctors and nurses from every medical discipline and they stuck me with all kinds of needles and did too many tests to name. Mommy and daddy were with my the whole time, they stopped everything in their lives just to be with me in the hospital. After about a month, I was finally ready to go home and meet the rest of my family. My first day home, I decided that I didn't like the NG tube, so I pulled that thing out!! Mommy and daddy tried to get me to eat by mouth, but it just hurt too bad. Sometimes I would take a little, but most of the time, I just wouldn't eat, so they had to put that nasty tube in my nose. They tried everything to keep it there, but I just didn't like it. We fought with that tube for about a year and it got to the point that they had to put it in when it was time for food and I would pull it out as soon as I could.
Anyway, after I came home, I just wasn't developing and meeting expectations. I had a great pediatrician, but he wasn't familiar with "complications" He arranged visits with specialists, and all they could say is "Yep, there's something wrong with him" Mommy and daddy did the best they could. Sometimes, well many times, I would scream and cry for hours and hours, sometimes, up to 18 hours nonstop. One day, we were going on a ride to see a new doctor, a geneticist. When we got to the office, I guess I was just too hot from screaming and crying and I had a seizure. I stopped breathing, I started to turn blue, every muscle in my body locked and I became completely stiff. Daddy was holding me when this happened, and I think he was just as scared as I was. Later he told me that he thought he lost me. Anyway, nurses came running and they cooled me off and stabilized me and I was off to the hospital again. This time, we went to a local emergency room, but they couldn't do much for me because they don't have a pediatric department. The emergency room doctor wanted to stick this big needle in my back for a spinal tap, but mommy and daddy stepped up and told him no.
They arranged for me to go back to Children's Hospital. This time I was admitted to the neurology wing. I continued my normal routine of screaming for hours and hours and not eating. I stayed there a month and met many many wonderful doctors, nurses, and students. Mommy and daddy were by my side the whole time. They weren't both always there, they took turns so they could get some sleep every now and then. I kind of feel bad for my sisters because this was the second time mommy and daddy left them with others to be with me, but they did find time to go home and see them a couple times. Anyway, while at the hospital, they tested me for everything and anything you could possibly name. I was very small so drawing blood was nearly impossible, and the many spinal taps, well, I don't even want to talk about that! Everybody was wonderful and they truly cared. They did everything they could to determine what was wrong with me, but all tests came back as negative for whatever they were testing for. I had pages of symptoms, but no diagnosis. They couldn't figure out what was wrong, and the only conclusion they could come to was that I had a unknown genetic and/or neurological problem. With all options exhausted, they sent me home again, and I continued my normal routine of screaming for many hours, not eating, and pulling out the NG tube.
After a few months, I had a couple more seizures and back to the hospital I went. This time, I went to A. I. DuPont in Wilmington, DE. They did the same things as Children's and tested me for everything and found nothing conclusive. As usual, I had pages full of symptoms, but no real diagnosis. We did meet a new GI doctor and eventually, he put a G-tube in my stomach. After that, I was able to keep food in my stomach and I grew and grew and grew. This was a real turning point. Before the G-Tube, well, it seemed like I lived life day to day not knowing if I was going to see the next day. After the G-Tube, everything stabilized, I started to gain weight, and I started to build muscle. I think the G-Tube may have saved my life.
After a couple years of steady progress, I started having seizures. I don't mean a rare occasional seizure. I would have back to back seizures. I think the most in one day was 14. They just wouldn't stop. Sometimes they were short, lasting 10-15 seconds, other times, they seemed like they lasted forever. If you have never seen somebody have a seizure, it's really one of the scariest things you would ever see. Once this began, I started to see a new neurologist. We were able to get the seizures under control with medicine, and I still take the medicine today. So, on top of everything else, we found out that I have epilepsy too. Again, this is just another symptom to add to the list which results in no real diagnosis.
So now, I am four years old. I still won't eat by mouth and I still rely on my g-tube for 99% of my nutrition. I still can't walk, sit, or talk, but I can smile and laugh! I understand a lot more than people might think, but there is no real communication beyond facial expressions and tone of voice. While I am slowly gaining control of my muscles and movements, I have a long way to go. I am still working on learning how to sit without assistance. I regularly go back to Wilmington to see my friends at A I DuPont as well as other specialists not associated with the hospital. I attend Howard T Ennis school in Georgetown, DE. They take great care of me. I get to go to school with other kids with problems as well as kids without problems. I get speech, physical, and occupational therapies there.
Everybody I meet says that I have a lot of potential. Nobody is sure if I will ever be able to walk. Some people think that with enough time and a lot of work, I will, but other people just won't commit to a real opinion. Everybody does agree that there is no reason why I can't eat. I have been through every GI test you can name, and I am just fine. The general consensus is that it is purely behavioral with the theory being that I still associate eating by mouth with pain because of the NG tube and acid reflux. The NG tube had to be inserted up my nose each time I ate, and acid reflux is very common in premature babies. They think that when I am presented with food, I remember the pain of acid reflux as well as the NG tube, and refuse the food because I think it will hurt me. My new friends at Kennedy Krieger Institute say that they can change this. They say that a large part of their program consists of behavioral specialists who can change the way I think about food. All I need to do is come to the realization that food does not hurt and that food helps. Once I get past this hurdle, I am certain that I will eat!
For more information visit: http://www.bubbamancan.com