Friday, January 14, 2011

Time for some changes....maybe!


He sleeps like his mama!!

I talked to the trach/vent respiratory therapist today. Man I'm glad I did! I told my ped that I guess we were going to wait until Jax was deathly ill in the PICU before we look closer at his lungs. She said she didn't want to do that. Well no one is doing anything! If I don't bring it up, it doesn't get discussed. When I talked to Kris today (the trach/vent therapist) She said we need to admit him for one or two nights, and tweak the vent while watching him. That way we can maximize what it does for him. Unfortunately that won't be enough to solve this lung problem, its far worse than just not utilizing the vent. She told me that waiting until he is so sick in the PICU is ridiculous! That she is all about being pro-active. She is my kind of women. And to think, a mama and a respiratory therapist think better than the doctors! I also told her I was thinking of getting a second opinion from a different pulmo. Please remember, I love my pulmo, but someone else might be able to think of something we aren't doing. She gave me two that she really liked, and we will get with the one that has the earliest opening.
The only thing bad about admitting him is I hate to throw him into the lions den by putting him into the hospital in the middle of respiratory season. But we can't wait, we can't wait for him to get sick first. The other bad part is they only have one trach/vent pod. So he could be with other trachs that are there for a respiratory virus. They will probably put him on reverse precautions. Anyone coming into his room has to glove and mask to protect him from their germs. I'll be making a new handwashing sign for his door as well. Yep, you better believe it!
I really hope we can get some more info. Lord knows we can't leave his lungs in this condition!

I'm feeling that I may need to change the blog a bit. I started this blog for Jaxson, to put on paper (so to speak) all of his trials and triumphs. Now that we have another special needs in our home, I'm not sure if I should change the blog or not. I don't want to get away from why I started it in the first place. I also hate to change it and confuse people that may think we are gone if we change the title. Plus this has basically been our family blog as well, we put everything on here that happens in our home. What should I do? Should I leave it or change it?

I am also going to add some tabs at the top, now that I know how to do it! I am going to put a question and answer. I get tons of questions in comments, and I can't answer them all. I was thinking of doing a Q&A post like Renee, but I think this will be better. If you ask me a question, look in the Q&A tab for my answer. I'm also going to do a tab for Jaxsons story. I love it when I go to a new blog and they have a tab that I can go to and read the childs whole history and get up to date. I have no idea how long it will take me to do these, I have to find time to sit at the computer for a while and do it. Things might be quirky for a while, so bear with me!

17 comments:

ParkerMama said...

Can you shoot me the names Chris gave you? Our insurance won't pay for Pfeffer and that means Medicaid won't pay out. grrr.....

ParkerMama said...

We like Daftry too. Lots. :)

Alaina and Kyle said...

I say make some changes!! Your family has changed and now you have another adorable one to add right along with Jaxson!!

Sweet Pea's Mommy said...

I wouldn't change the blog very much. Maybe change the name within the site, but not the real web address? I don't know. I don't think we will change anything on ours except probably say "Life with Sweet Pea and XXX" in the graphic on our page. I personally expect your blog to be about your entire family. You can put tags on postings that are specific to Jax or Arina so people could look at those specifically if they wanted. Just my two cents.

Good luck with the hospital stay! I'll think healthy, germ free thoughts for you all!

Kristin said...

If your worried about people thinking they've come to the wrong blog if you change the title, maybe just try adding a subtitle first, like:
Jaxson's Fight
{and the Ruggrats fun}
or whatever for a subtitle :)
I like the tab idea, too.

Zoey's mom said...

Life has changed so beautifully,hasn't it?And not all change is bad.I say go for it!I am sure it will be great!

The VW's said...

Hope the admit brings about some relief for those lungs of his! I know you do the Tobi (and I'm not even sure what that is), but is he on any type of steroid neb on a daily basis? Gavin does Pulmicort every day and it has really helped to clear up his lungs...his used to be a mess! Plus, it keeps inflamation down. There has to be something that can help Jax! Make those docs be pro-active!!!

As for changing your blog, you could still call it Jaxson's fight and then add all of your names underneathe....his family who is so good at helping him to fight! And, obviously Arina is a huge part of this fight! It amazes me how happy Jax seems since she came into your family! She is such an inspiration!

Oh, and I love the Q & A idea! Hugs!!

Rochelle said...

Praying for you Jax that you stay bug free in the hospital!

Becca said...

You don't have to do any drastic changes with the blog, just perhaps a title and picture adjustment to include Arina. :-)
And I love the tab idea. So, I had seen somewhere how to add the tabs the other day, then yesterday when I decided I wanted to add some, I couldn't find them. Hmmm...must stop blogging from work with all those distractions...

Wow, I really hope you can get some answers soon about Jax's lungs. :-(

Kiley said...

I think the idea of a subtitle sounds good that way your address does not change, but it adds the whole family to the blog.

Holly W said...

I am all about being pro active! Woo hoo!
If you feel the need to change your blog up...I'd keep your url so you don't lose anyone, but maybe change the title...
and no changes have to be permanent...mess around and see what you come up with!

Mama Mason-Mann said...

Good luck with the hospital stay and getting to the bottom of Jax's sick lungs. We'll be thinking of you when the time comes.

The whole blog thing is tricky. I like the idea of the tabs and I think changing the name but keeping the site address the same is a good idea. Your family has gone through some truly wonderful changes lately. ;)

ANewKindOfPerfect said...

I like your blog just the way it is. I love reading about Jaxson and what is going on, but I of course love the rest of your family too. I think the tabs are a great idea though. :)

I hate the idea of an admit too, but it sounds like this might help you finally get Jax some answers!

Shelly Turpin said...

Hope...hope...hope that being admitted can help get things to a better place. Way to advocate Mama!

Jessica said...

You are so right on when you say if you don't bring it up it doesnt get talked about. Man-O-man can't my Jax get a little help? Geesh! I hate to here that he will have to be addmitted as this year is suppose to suck snot (hehe) in the respiratory side of illness, but you gotta do what you gotta do. And if this is going to be useful then heck yes sister!

One question... If you like the opinion of the sub pulmo, are you switching over??? :(

Michelle and Sean said...

So which docs did she recommend? I'm curious because well you know its hard to find a good pulmo and I don't want to waste my time with one that may not be the best. Anyway I agree it stinks to have him admitted right now but if he needs to then you might just have to do it. Dr Murphy told me they are kind of slow right now but if you wait a little longer then it could get busy. Either way it sucks.

Changing your blog up sounds good. I wanted to do that with mine too but I have no idea how to do anything like that. My sister set this blog up for me and I just update it. Maybe one day I will be able to figure it out!!

Praying and hoping Jax's lung problems will get at least a little better soon.

Melissa M said...

I hope you get some answers on Jax, and am praying that he doesn't get sick while in the hospital!

I need to tweak my blog too (like adding an intro to us tab), but I haven't had the time. I need to stop reading other blogs so I have time to work on mine!