be the voice

Going to countless doctors appointments with your special needs child is not something out of the ordinary. For us, we have been fortunate to not have to visit the hospital many times with Maddox. He had to go once for seizures when he was 4 months old and it was due to him out growing the dose of his medicine. They gave him a loading dose of phenobarb got his levels right and we were on our way home in less then 24 hours. When I had to take him to the hospital this last time it was a different story. But because it was so uneventful the first time, it was hard to believe what was going on this time we went. 

We had to go again for seizures. When Maddox gets sick, even the slightest sick, he has a seizure or seizures. He had been having seizures for about 2 weeks. A dose of diastat usually resets him. It worked the first time for about a week then after a week they came back with a vengeance. I gave him a dose on Sunday and he was good until Monday afternoon. I kept him home from school and by Wednesday they had started again. I gave him another dose, took him to the pediatrician and called his neurologist to see what I should do from here. The pediatrician and I both suspected he might have some kind of sinus infection because he sounded stuffy. He started taking amoxicillian which usually stops the seizures if it is an infection and all is good. Not this time. I gave him another dose of diastat on Thursday early afternoon and upped his dosing of Onfi. Talked to his neuro that afternoon and was told I could diastat him again at 12AM if the seizures had not stopped. If that did not take care of the seizures then I needed to bring him to the ER. He ended sleeping until 2AM and then began to seize again. I gave him another dose of diastat at 2AM and it took 30 minutes to take affect. This usually is an instant fix. I should have known things would not be good after it taking 30 minutes. He woke up Friday morning at around 7:30 and began seizing again. I called Maddox's Aunt and we both decided it was best to take him to the ER where his neuro was so we could get the best care. I waited for Sammie to get here so we could go to the hospital together. I had to pack stuff for the hospital anyway. I called his neuro to let her know we would be coming and she would be expecting a call from the ER doctors to decide what to do. When we got to the ER Maddox was asleep. It is a long drive. The ER doctor was good T asking questions and talking to Maddox neuro on what should happen next. But then the worst doctor with the worst bedside manner ever came into the room. He proceeded to tell me after looking at MRI's and cat scans of Maddox's that were over 2 years old. That because of what little brain matter Maddox had that for him to be seizure free was impossible. I told him I understood that, but that what he was doing now was not normal and usually after diastat, amoxicillian, etc.... they would get under control and that unless Maddox was sick he did not have seizures. He nodded his head as to appease me and then left with his flock of interns following behind him. I am used to this kind of behavior, but Sammie was in shock as to how he spoke of Maddox like he was so insignificant. This is where things started to go wrong.

The ER doctor per Maddox's neuro told me they were going to give Maddox a loading dose of phenobarb and that should stop the seizures. He told me if I didn't feel comfortable leaving, that they could keep him in for observation overnight. Less then an hour later I was calling Michael and telling him he needed to get there as soon as possible because I wasn't sure what was going to happen. They gave Maddox a loading dose of phenobarb, the problem was, they did it to quickly. I am sure they have a protocal they follow. 3 year old comes in with seizures and the give them phenobarb at this rate and this much. But with Maddox and most special needs kids, they are different. Unfortunately we had to learn this the hard way. Maddox's vitals started to drop. His heart rate plummeted, his blood pressure dropped, his resting respiration's where 6 breaths per minute. It happened so quickly and during all this, he continued to seize. So much was happening during this time all I remember thinking was, this is not what I expected to happen. I thought we would get a dose of phenobarb, it would stop the seizing and we would be home that evening. We came dangerously close to leaving the hospital without our baby. We were rushed to the PICU, where the doctors gave him adavan for his seizures while they called the asshole neuro who I talked to earlier. The one who felt the need to inform me of how small Maddox's brain was. Tell me something I don't know. I asked that they call Maddox's neuro and after speaking with her they decided to also give him dilantin for the seizing. This helped for a while, but didn't stop them. They stabilized his vitals and then he was fitted with EEG wires to monitor his seizures. This was all Friday to early Saturday morning. He seemed to be resting comfortably, until the next evening when the seizures began again. And not before I had to deal with the asshole doctor again. This time he came in to tell me, since the seizures had not stopped all he could deduce was that Maddox was deteriorating and was essentially dying. He asked had no one ever talked to us about this before, because it was just a matter of time before he passed away and we should be prepared for that. I told him everything he was saying to me was the complete opposite of anything we had ever been told. We had been told would he ever be like me and you, no, but what he had was not life limiting. He had already done way more then any doctors had ever thought he could and when he was not sick he was a pretty normal kid considering how involved he was. He met all his milestones at school, he continued to progress in all his therapies. Opposite of what he was telling me. Then he continued with his hands on his chin like he was thinking "I wonder what it would be like to be Maddox, what does he think about, hmmmmm". I wanted to strangle him, but I held my composure.

That night got worse. He began seizing again and it seemed to be one continues seize. For over 2 hours. After I found a nurse and insisted that someone do something to stop them, another uncompassionate doctor came into the room and said, since Maddox was in static epilepticus that maybe he was dying. That some kids with brain injuries or conditions like his come to the hospital in the state that he is and they are dying and the only way to maybe save him was to put in in a medically induced coma for 5-6 hours. I argued that since his brain was smaller did it have to be for that long and she said yes, even though it was smaller they had to do it for that long. Now I know Maddox is strong and a fighter, but I also know that he was in a bad place and his body was not strong enough to come back from something like that. I told her if they did that he would die, and she said "that is the RISK you have to take". Thanks for being so compassionate, it's not your baby, so I can't imagine you would care. Wonder how she would handle the situation if she was in it. I insisted that I speak to Maddox's neuro, she said this was per his neuro, I again insisted on talking to her and hearing this from her before I said yes. She got the doctor on the phone with me and never once mentioned medically induced coma. She asked if she could give him phenobarb again. She asked how long it had taken them in the ER to do the first dose and from there decided that they were going to do a smaller dose over a longer period of time. The lovely PICU doctor confirmed with me that I agreed to this and if this didn't work we would try the medically induced coma. THANK GOD it worked. He was so sedated he was practically in a coma, but it stopped the seizures. At this point they are running tests on everything, checking for virus's, infections, shunt failure and we even got to hear that he was dying. The asshole neuro even said since he was peeing so much since he was being filled with fluid, that since he was dying he was peeing out all his cerebral spinal fluid. Needless to say, when your in this situation, even though you know your baby/child better then any doctor. You know what they can and can't do. You know what is normal and not normal for them. You know that if the asshole neuro is right that you will die yourself if something happens. But after being in this environment for a while you start to doubt yourself. You start to wonder if they are right. For me, you even start to question did you keep him/her here just for your selfish reasons. Because these doctors have you doubting everything with their negativity.

This is why I am writing this. Be the voice, for your child who can't tell them. They can't tell us if their head hurts or their stomach hurts or whatever hurts. They count on us to know them, to figure it out for them so you can be the one to convey what they are feeling. And believe me, if Maddox could have, he would have told the asshole neuro, "you know what I am thinking, I am thinking f--k off d--k head". They count on us for everything and we should never second guess what we know. What we know they can do, what we know they are capable of and what we know is wrong no matter how bad it looks at the time. Some of the doctors are so jaded. They have seen so many horrible things that they have turned every patient into a total clinical case. Not thinking of how devastated the parents would be if something happened to their child. BE THE VOICE, for the little ones who have no voice of their own. Never let anyone doubt your child. They have already proven to beat the odds, proven the doctors wrong and proven how much stronger then you or I ever can be.