The rest of Jax story

Here's a quick rundown of Jax since that 4 months of hell we endured. I didn't want to leave anyone hanging thats been reading it.

He actually did really well in 2007, medical wise. The only thing was he wasn't developing and the siezures kept getting worse and worse. He was hospitalized a couple of times, for siezures and getting his g-tube. He actually got to were we could take off his oxygen for a few hours a day.

In January of 2008, he all of the sudden was acting wierd. He would just stare off, it was like a seizure but he wasn't moving. My pediatrician talked with nuero a few times and they just blew him off, so she admitted him herself. They got an EEG which showed he was in status, or constant seizing. This is very deadly, the brain cannot survive like this and he would die if it wasn't stopped. The only way to stop it is strong sedation drugs. So down to PICU we went and started him on propafol. They had to put him on bipap with this.

But that didn't work, so the only other option was a drug induced coma. To stop the brain activity and then restart and hope the status doesn't restart with it. The risks of this were huge. The coma itself could be deadly, it causes blood pressures to plumet, along with needing the vent to breathe. But we had to do it, there was no other way.

Needless to say from this pic, the coma was a nightmare, he reacted more than we ever thought he would. He blew up like a balloon, and he wasn't stable on the vent. The settings were maxed out. They mentioned the O word (oscillator) which is the high frequency vent, but our prayers must have been answered that day because they never had to use it. They kept telling us that the coma itself would probably take his little life, and if it didn't, the status could very easily still be there, I guess only about 20% actually stop. Yikes

But as he slowly woke up, it looked like the status was gone. We had started him on the ketogenic diet so we don't know what actually helped. He still has around 50 siezures a day, but nothing like he had before. Another miracle.

He has been hospitalized multiple times since, for various reasons. his nissen, respitory distress. In October 08 he had bilateral plureul effusions and had two chest tubes placed. Thats when the clot was found and they discovered that he probably had a clotting disorder. He has been on lovenox shots since and we don't know when that will end. He came home with a picc that time and that was a godsend because we didn't have to try to poke him to get labs.

He could go into status again at any time. So we just treasure each day with have with him. Because although we've never had to face it again, I don't know if we would do the coma again. I mean how many lives can one person have?Now we are facing another surgery, and I'm sure it won't be the last, but thats ok. He is still our little miracle boy.