Reality.

I spent the day today with Jax again in the ER. He was taken by ambulance from my peds office after high white count and low blood pressure made her worry that he was getting septic. She said the hospital would freak if they knew she'd sent him by car with that low of pressures. Of course once in the ER, his pressures were coming up, and his heart rate coming down. They drew cultures from every orifice to try and find the source of the white count. They gave IV fluid to bring electrolytes up a bit, and said I was competent enough to watch him at home for more signs of sepsis.
*sigh*
My Jaxson, my sweet boy, I wish he would just tell me what is up with his little body. Our trach/vent coordinator said its very possible for his airway to be getting worse instead of better. His chest muscles are super weak, and he doesn't really grow much. Besides the fact that he doesn't do anything normal.
She left me a message today saying she had talked to pulmo and the consensus was to increase peep to 8 on the vent and try to keep those airways open. Since I missed her phone call I didn't get to ask what about during the day when he's off the vent and still struggling? In a way I don't want to go there. Again we are going backwards. Increasing settings instead of lowering them.

You know how badly I would love to blog about tubes in ears, or therapies that we are doing. Yes, I now have Arina that does those "typical" things, and I can blog about that with her. But in the end, its always about struggles to keep my little man alive. Before I found blogging I felt so out of place in the Down syndrome world. Down syndrome was something that was barely ever mentioned because so much other stuff was going on. I hated going to our local DS parties and watching the kids run and play, while answering question after question about why Jax can't do this or that. Online I found other families that were in the same boat as us. Its refreshing, to know that we aren't the only ones.

We'll keep fighting alongside Jax, until he tells me he's done.
I'll continue to get little sleep at night, because that is nothing compared to his daily struggles.
All be it slow, we will get to California, maybe a bit behind schedule thanks to Jax.
But what would life with him be without constant drama.
We'll probably never know!!