Sunday, March 29, 2009

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.


12 comments:

Junior said...

Jax is certainly your little miracle boy. Love the picture oh him with his brother, so sweet.

stephanie said...

I feel exactly the same way.

The VW's said...

What a tough little man!!! He's been through so much, but he looks happy and healthy. Probably because he is loved so much!

So, he still has around 50 seizures each day? That would be so hard to watch! What is he on for seizures? Gavin is on Keppra, this is what got his to stop. I know that each kiddo is different though.

Thanks for sharing the story! Have a great day!!! :)

My name is Sarah said...

This is Joyce. What a miracle boy indeed!!! Thank you for sharing the Jax Story. I continue to marvel at the advances in the medical world when I hear about all they were able to do to get Jax back into your arms. My word though, what a fighter he is. I pray that improvement continues for Jaxson. He is such a sweet little guy.

Michelle said...

He is just a marvelous wonder...that little boy! For all of that to go on and he survives, it's easy to realize we are not alone in all of this and that there is a 'greater-hand' in all we do. What a blessing and a fighter...the both of you! I pray you are blessed with him for many years to come my friend! What an angel!

The VW's said...

Gavin was on all three of those seizure meds as well for quite awhile, but eventually his seizures stopped and we were able to get him down to just the Keppra. I pray that Jaxson's can get under control as well some day!

Junior said...

Lacey just saw your comment on Junior's blog. thank you , thank you, we can't wait to get the blanket. I know Junior will love it and I will be sure to take lots of pictures.

Anthony and Alyson said...

Hey you!!! I need your address!!! I wanted to send you guys something!!

Veronica said...

Oh Lacey I am glad that lil Jax is doing better. My mom loves to talk to Ray and here him babble away. We might drive through UT this summer IF Ben gets picked up for a temporary duty in Cali. Pray he gets it. 6 weeks home! He is going to school online at Utah State. Now who does he root for at the game? Air Force or Utah State? Hope the boys get in a game together this year. Enjoy your vacation. Please Kiss and hug my mom for me and tell her that she will never know how much I miss her. Have a safe trip. You guys should go to Neptunes Net on County line. Kinda pricy but well worth it! Have fun.. Love you guys!

jjpsmommy07 said...

Thank you for sharing your story. Jonathon and I just started following Jax. Such a beautiful little boy you have and he looks very happy indeed. I hope you all enjoy your vacation.

Loren Stow said...

Thank you for sharing your story - what a strong and determined little man!
Jax is in my thoughts and prayers and I look forward to following his progress on your blog!

Becca said...

Oh, goodness, I had no idea what sweet little Jaxson has been through! He's a fighter, that's for sure! He's a beautiful little boy, and definitely a miracle.