Friday, June 26, 2009

Jax new button

Kind of a blurry pic of Jax, but the kid doesn't hold still long enough for me to take his picture. Some people have asked, but we still haven't heard anything from Boston yet. I emailed my hemo doc today to check in. No word yet.
Today we tried to get some stuff done. We found out that Ray can't get financial aid yet because he hasn't made sufficient progress from fall of 2005, spring of 2006. I just laughed. Fall of 2005 was when Jax was born, it was daddy's first time in college, of course we didn't know anything about Jax before he was born. But he had about a month left of school when Jax was born, so he had to quit that last month because Jax was in the NICU. Then he signed up for spring, and then Jax went into the hospital again and stayed there for 4 months. So he didn't even get started that semester. The good thing is we can appeal this, get Jax medical records and a letter from his doctor and they should wipe the insufficient progress off and we can get aid.
We went to daddy's softball game tonight, and as soon as we got there dark clouds moved in and the wind kicked up. Tanner had a fit. An autistic child in that weather is bad, thats one of his biggest fears. And when he saw lightening, the screaming started. I got him and Jax to the car just in time because the rain started, and the wind actually knocked a tree into a house. Ray said he could hear Tanner screaming from the fields. Well they canceled the game, thank goodness, I say never risk lightening.
Here is a pic of Jax new button. Interesting huh? Its called a chait trapdoor.

Its kind of blurry (yah, my camera is cheap) but if you look on his left leg you can see the 2 inch scar from his cutdown line. It still has stitches in it.

This is the wierdest piece. The extension. The piece that fits into his button is actually metal.

He is not near as fussy as he has been. But man you touch his belly and he jumps a mile. We are going to give it some more time and see if that pain goes away. He still has open sores under the button so when I change the dressing he screams, hopefully it will get better with time. We are still watching for signs of infection, if nothing in the next couple of days, we should be in the clear, wahoo.


Stephanie said...

Hey sweetie, glad to hear things are at least a little better. Yea, that button is unique.. trapdoor huh???
I don't mean to sound like a commercial, but I wanted to let you know about a product we're using on V to help with the open sores he has from the g tube leakage. It's called Mepilex Lite, it's a thin foam dressing. It comes in sheets that can be cut to fit any area. I cut a 2x2 (like the gauze we usually use) and put a slit in it to fit under the button.
The Mepilex Lite adheres to the skin so you don't need any tape but it's meant to go right over broken skin to protect and heal it. IT DOES NOT HURT when it is removed. It's absorbent too, we just replace it when it gets too saturated. It's helped his skin immensely and makes him alot more comfortable. I know you use the cavilon no sting barrier sometimes.. we got the spray so I don't have to touch the sore area, I just spray it, blow it dry, then place the Mepilex Lite under the button.

Denise said...

Hi Lacey.....glad to see you are hanging in there. It makes me feel happy to hear you talk about normal things like taking the kids to watch daddy's softball game (even if the weather didn't cooperate). I have really been struggling with what to write to you lately. I read your blog constantly and am so thankful for all of your updates but I feel bad because I haven't written much. Between yours and Heather's blogs, I have been real emotional this week and I have not been able to put my emotions into words. I literally cannot stop thinking about Jax and how badly I want to see him and hold him. We are tentatively planning a road trip to TX in August and I am desperately trying to figure out how I can include UT in that journey. You mentioned in your previous post that you are unsure of if you have done the right thing in keeping Jax going through all his trials. I don't know the answer to that (hence the reason I didn't comment) but all I know is there is something magical about that sweet boy and that is why he is suppose to be here right now. I know I am speaking for so many others who have yet to meet Jax also but I can't begin to explain to you the emotional attachment and love I have for him. He has truly drawn us all in and EVERY DAY gives us all the strenth (as do you) to fight whatever battles our own children must fight. You are both heroes to me and I really hope we find our way up there next month and that we can FINALLY meet your family. Hang in there my friend!!!

Shari said...

I agree. That button is unique and the metal thing is too. Poor baby! So many battle scars! He is a fighter and I am praying you hear from Boston soon!

Melissa said...

AAAAWWW, that has to be one of my favorite pix of Jax...THOSE CHEAKERS!!! Thanks for sharing that, it put such a smile on my face...
yeah, we got hit w/a pretty bad storm over here...I just got my power back!

WOW, those are some buttons on that little bod...poor baby! THANK YOU so much for you help, I'd be lost without another Tube Momma!


Stephanie said...

Generally they aren't to leaky under normal circumstances. While they are healing they can, or if they get really backed up and under pressure just like the gtube.
We got our Mepilex Lite from the wound care nurse at the GI's office. She said if we liked it she would send an order to our home health care co. They also gave us the Mepitac Tape I wrote about before, the silicone tape that doesn't hurt skin.. it's made by the same company as the Mepilex. Good stuff.

Lily said...

What school is Ray going to? My mom just retired as an assistant professsor from SLCC. I would be happy to ask her questions on who to go to if you needed me to.
I google all the medical terms I read in blogs, so if other parents contact me for advice I have some small clue of what they are talking about.
You could write a book! Actually a blog works just as well :-)
A fun story about Autism - My nephew is Carson Smith (Carson Smith bill) anyway his sister wrote on her FB that he was in love! His girlfriend must go to Pingree with him, she wears a helmet and pulls her hair out and he rubs her back and shares his fruit snacks with her.
Hang in there.

The VW's said...

That button is quite small, that's a good thing! I'm so glad that the surgeon went ahead and put it in for Jax! That looks a lot better than the temporary one! I'll be praying that he doesn't get an infection and that all of his pain goes away!

Sorry the softball game turned into a nightmare! Nothing ever goes smoothly, does it?.....especially with 4 boys! :)

I hope that you hear from Boston very soon!!! Hang in there Momma! You are doing such a GREAT job!!! LOVE, HUGS and PRAYERS!!!

Dawn said...

Poor baby give Mr. Jax a kissy and hug from us. Hope he feels better soon.

Emily said...

Seriously... the weather here has been crazy. I hope we can enjoy this week with no storms!
I am glad there has been no sign of infection at this point. I pray that he continues to heal, and his pain will leave his precious body.
As always... you are in my prayers and I look forward to Tuesday!

Cammie Heflin said...

Poor baby, it does sound like things might be getting a little better. I sure hope so, he is so precious.

Anderson Family said...

His new button still looks good - we are praying he doesn't have to deal with any infections.

Sorry about the softball game - this weather is just crazy!

Good luck with the financial aid - what a nightmare. Hopefully with a doctors note it will go smoothly and you will get the money soon!

Hugs from Kristi and Carter

Michelle said...

I'm sorry he's still feeling pain when you touch his belly :( Hope you get some answers soon - especially praying you hear from Boston soon!

ParkerMama said...

Wow, that really is something pretty neat. I hope it works beautifully!

I'm so thrilled to hear that so many are loving and supporting you guys.

We are keeping you and your family in our prayers.