Saturday, September 10, 2011

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!


Simply, Sarah said...

Happy birthday to Arina!!!

September 11 is a good day to us, because that's the day we met and got Anthony. Yes, 9-11 represents tragedy, but to us it represents hope.

Patti said...

Oh Lacey, I am praying for Jaxson and for you!! HAPPY HAPPY BIRTHDAY to the beautiful princess!!

Scrappy quilter said...

Happy Birthday to Arina. Praying for Jax and for you. Hugs

Anonymous said...

Happy birthday to Arina!!

I'm sorry Jaxon is still in the hospital and that his gut is rebelling. Ugh. Poor little guy just can't catch a break. I hope he is able to come home soon!


Runningmama said...

Happy Birthday to Princess Arina. I haven't been able to check on my blogging buddies in a week because I have been out of town...I am so sorry to hear that Jax is sick, I hope he gets better soon and that you can get some rest.

The VW's said...

Praying tons for sweet Jax! Hope he is home again really soon!

Hope your family is able to celebrate big with Arina today....despite the fact that Jax is still in the hospital. Love, Hugs and Prayers!!!!

Cathy said...

Happy Birthday to Arina - it's my son Lars' 2nd birthday today - what a great day to celebrate the start of new life in light of the tragedy we all shared 10 years ago today.

Hope you are enjoying your day!!!

Melissa said...

So sorry you missed another Buddy Walk. I know you were looking forward to that. Glad that a little retail therapy helped perk you up!