Wednesday, May 20, 2009

Home

Jaxon is home. He is home without an IV line I should say!
He is at full feed on his J-tube. He definitely still heaves more than we like, but it's either he does that and live a bit more free with his GJ tube and his backpack, or he is carrying that backpack and a line to a medical pole. We don't want to go the IV road unless he starts getting severely sick. The doctor said we may start seeing a trend of what upsets his system enough to end up back in the hospital with extreme vomiting. We looked at his past week, and he had lost 1.4lbs from the day of his motility test to the day he was admitted...only 3 days. I'm sure glad I brought him in. We are awaiting results of the Mitochondrial disease, which take quite awhile. Jax will have a GI follow-up on Tuesday. I'm sure I will have a long list of questions at that point!
As for now, he's finishing up a 10-day supply of antibiotics, continuing his Zofran for nausea, his Prevacid for reflux and of course his acupuncture stickers are in place.
As for now, his intestines are still absorbing his food properly and he's gaining. So we will continue to do our best to make him as comfortable as possible and life everything that it can be for him. We will continue his occupational therapy, chiropractor, feeding clinic, acupuncture and start physical therapy. We are also looking at a holistic medical facility to see what they think. I still have high hopes of getting him to a more comfortable place and maaaaaybe "eat" someday? Although I'm told that would most likely never happen, I will still certainly try.

Thank you for all the love and support you give us. Please continue to keep Jaxon in your prayers.

11 comments:

Laura said...

Wow, I'm so glad you guys are all home together. This is good news. I can't wait to hear what they can do on the holistic side of things. He will eat by mouth some day. It will happen.

SaraBelle said...

I am SO glad to hear Jax is home! I will continue to keep you all in my thoughts and prayers!

Amanda said...

I am glad to hear that Jax is doing well with the J tube feeds again. I bet just being home made him feel a million times better. We will keep praying for you!

Kimberly said...

hooray for bring Jax home! I hope he continues to do well.

The Best Things Come in Two\'s said...

So glad to hear you are home! I've sent many prayers your way these past few days as I followed your journey. Also, I have an award for you waiting on my blog!

mommara said...

So glad you guys are home. We will keep sending our prayers that way!

Heather said...

I am so happy to hear Jax is home! Continued love and prayers coming your way!

Tara said...

Great to hear Jaxon is home! My cousing had a GREAT experience with holistic medicine when she was diagnosed with Juvenile Rumatoid Arthritus. She was on all this medicine that caused her hair to fall out. Some mornings she couldn't even hold a spoon. They went the holistic route and she has been doing awesome since. Hopefully you will have the same experience and little Jax(and you) will get some relief!
Njbride0603

Jennifer said...

I was so suprised (and glad) to see that Jaxon was not here when I came into work this morning! I miss his smiley face, but am so glad you guys are home and hope we don't see you back too soon (or at all!)
Kisses to the boys!

Nurse Jen

Jenn said...

Wow Annie! You guys sure have your hands full with those boys. I will definitely keep Jax in my prayers and will send good "eatin" vibes your way! :)

signals3_t5 said...

Hi, Jaxon really Thanks for the mention. Nice blog.



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