Friday, May 15, 2009

Maybe heading to Boston

Today was a great day. Jax is still not sleeping well so I'm still exhausted, but ya keep on going anyway, right? I left Jax with daddy today and went on Mondo's (Raymond) field trip. We just walked over to the high school so they could run a mile and do some games. I needed to go with him because he is my one that gets neglected the most. And I haven't done much with their school this year. But man I tell you I got my excercise for the week, geez.

And some more mommy bragging, Carter and the D backs had a great game tonight. Carter got a double, a single and a walk, and they won, they are getting better and better every day. I keep forgeting my camera, tommorrow I won't forget to take some pics.

Julie took a blankie up to a little girl here that just had a kidney transplant, she's doing great, already out of ICU and on the floor.

I talked for a while with Jaxsons hemo doc. He is still waiting to here back from Denver, their being a little slow. Boston was very enthusiastic, and we can do a consultation without having to travel there. I had to take some pics of Jax to email them, one of his face, a naked front and naked back, so they can see the puffiness in his face and neck. His hemo doc will send all of his paperwork there and they will let us know. So to get this fixed we are for sure going to have to go out of state, either Denver or Boston, probably Boston just because they are quicker to get back to us and this needs to be taken care of. My ped is considering getting another CT of his head to check the pressure because of his super crankiness. We also think the increase in seizures may be related. Any time you screw up the body they have more seizures. So we will wait to do anything drastic about the seizures until after the SVC is fixed. The tonsils and adnoids are on the back burner indefinitly. Luckily its not needed too bad, if we turn up his O's at night he's good. His hemo said he doesn't know if he'll ever be able to be off the bloodthinners for two weeks, not with this clotting disorder. A clot is much to risky to chance.

I'm a little worried about going to Boston not only because it will be super expensive to travel all that way, but if he has open heart there than he may be there for a while. He is not easy to extubate, and it will be at least a couple of weeks hospital stay. Plus we just got Ray signed up for summer classes, and I don't want him to miss school, he needs to get it done. Jax has been interferring with school for him since the day he was born.

Here some of the sexy pics we took for Boston. I don't think you can see how puffy he really is in them though. In person its a lot worse.




18 comments:

Cammie Heflin said...

I hope things improve soon!

Tausha said...

You are such a strong women. I cry every time I read your blog. Sweet little Jaxson, what a fighter he is. I wish you were coming to Utah, I would let you stay with us. What strength you have. I look up to you.

Trina and Jophie said...

I love the little booty pic! So adorable!

The swelling in his face is really obvious...The rest of his body I don't see it as much but around the face/neck area its really puffy....Even his eyes appear puffy

Hopefully you can get this all ironed out. I'm really glad those tonsils/adenoids aren't a pressing issue...ONE LESS thing to push a mom over the edge is always the way to go ;)

Hang in there....

Hugs,
Trina and Jophie

Junior said...

Keeping you all in our prayers. Hugs

Ruby's Mom said...

Praying for you and little Jax Man!
I just love baby hinies so cute :)
I think you are an awesome Momma!!!!!!

Tausha said...

Not sure how I didn't catch that one. We would love to come to a BBQ!!! Just let us know the weekend and we will make it work!! So glad you live in Utah and not to far. My sister and Doug's sister live by you so we are down there once and awhile.

Emily said...

Oh I sure hope Boston will get back with you soon so you can get little Jaxson better. He is such a doll!

Heather said...

I know you will go where ever you need to go,when ever you need to go, and you will go because of the deep love and devotion you have to this amazing little guy.He is so very precious Lacey and he will find his way through this latest.Prayers for you all my friend.

stephanie said...

Sounds like news in the right direction for Jax. If you end up in Boston,I'm only 1 hour away,if you need anything please feel free,we're here. Sending prayers.

Alyson said...

The naked butt picture is funny :)....

You are such an awesomely, busy mama.....Your laundry list is a mile long, yet you just keep with the program......And you also still manage to give to other people.....You truly are an inspiration!!!

<3 and prayers always!

Alyson

Michelle said...

Continuing to pray for your sweet boy and all that is coming.

ds.mama said...

Even though it will be hard on your family, Boston is the best place you could take him. They have a dedicated pediatric cardiac ICU, and you can stay/sleep right in his room. They have a tour online if you visit the hospital's website.

We will keep praying for your little man and for you to stay strong. You are an awesome fighter too!

The VW's said...

Look at that cute boy! He is so precious! I hate thinking that he has to go through more surgeries! But, I'm glad to hear that someone is able to do them anyway!

Boston is a very long way away, but I hear that they are great there! I'll be praying for you as you make some tough decisions! And, I pray that you can get more sleep too!

stephanie said...

nice buns :)

My name is Sarah said...

Ahhh...sweet little naky booty

This is Joyce. Sarah has been spanking that adorable little bottom for five minutes - she just thinks it is soo cute. We are praying for Jaxson and for the strength as you make this difficult decision.

Kim said...

Jaxson has the coolest hair!

How tough it must be trying to take care of Jaxson's needs and still be there for the rest of the family. How awesome that you do this and still take time for others in need.

jjpsmommy07 said...

I hope you get some answers from Boston and they are able to help Jax. I am glad he doesn't need his adenoids and tonsils out NOW! Poor precious little boy. I think about all of you daily.
And isn't it sad that our other children sometimes get neglected b/c of our special needs children. I feel guilty most of the time, but I am doing the best that I can do for everyone!!! Hugs and stay strong! Will keep you guys in our prayers

Janet said...

You don't know me but I have been reading your blog for sometime now. I know this might sound weird but I do have a sister just right outside of Boston and she would be more than happy to let you stay I know you think strangers and I don't blame you but she is LDS and said she would not mind helping at all she is very loving and caring and giving. You can email me or whatever my email is janettraylor
@aol.com I wish you the best.
Sincerely,
Janet Traylor