Jaxsons Fight

Jaxson is still in the hospital, and still not tolerating feeds. Last night they started a tiny bit of formula mixed in with his pedialyte. He seemed to tolerate that ok. They upped it a tiny bit this morning, and that 4 cc's made his heartrate jump, wretching, and grinding his teeth down to nothing! So back down we went.
I talked with my ped yesterday about what she was comfortable going home with. She said he cannot come home if he is not on at least half feeds/half pedialyte. He can't go home on zero calories. The other option was to put a line in and send him home with tpn to give his gut a rest. That sounds like the best plan to me, just because the more we force his gut, the more it is going to resist. No doctor likes that idea though, because his access is so limited. They don't want to use up what he has, they'd rather save it for when he really needs a line. The only access he has is a popliteal, or a line behind his knees, and his right femoral, which I am NOT doing at home! Arms and chest and even neck are all gone. Left femoral is gone from heart caths and a cutdown central line. If he is still there Monday, I'm going to insist on the line. Hopefully we have a good attending next week, not one that will argue with me!

Today has been rough, I won't lie. It was our local Buddy walk, and for a 6th year in a row, Jax could not attend. He has yet to go to a Buddy walk. The only year he wasn't in the hospital for a walk was last year, and that was when we were in Ukraine getting Arina. 5 Buddy walks he's been in the hospital, how sad is that? But its Jaxson's life. It will always be Jaxson's life, and sometimes its so scary. To think that a 24 hour stomach bug has caused his gut to completely shut down, just smacks me in the face with a reminder at just how fragile he really is.

Tomorrow is our princess's first birthday with a family. Her first celebrated birthday, and I'm just glad that we didn't plan a huge party because of the move. Jax being in the hospital would have made that impossible to do.
But it did brighten my day to go birthday shopping for her. I forgot how excited I was to buy girl stuff. But I had to go past the barbies and dress-ups for now, and look at age appropriate stuff. There is plenty of time for the other. I can't wait for her to dive into a birthday cake, and try to blow out candles.
I'm also finding it interesting having her birthday on Sept. 11. In a way I feel like that is a day to remember what happened, and in a way its nice to have something good on that day. I know I'll never forget. That whole day is seared into my brain forever, and I can't even imagine what it was like to be in the city that day.
Prayers and parties tomorrow for sure!