Tuesday, July 13, 2010

I love new discoveries!

Last night we had a neighborhood pool party. It started late because it had to be after the pool closed to the public. We decided since it wouldn't be as crowded it would be a great time to put Jax in the pool for the first time since he was trached. Jax loves the water, so I'm not going to take that away from him because he was trached, or because he can no longer come off his oxygen long enough to swim. We'll compromise! The bad part was the pool wasn't as warm as normal, so he didn't like it one bit, and it was only a two minute swim. Oh well, we'll try again!!


I have a new discovery for you trach moms! I found this on our friend Colton's blog. I noticed in a picture of him a new HME that had an oxygen attachment. I had to know what it was, because the normal oxygen attachment we have is the worst. The tubing comes off the side, and every time Jax puts his arm up he knocks it off! Colton's mommy sent me a couple to try. And my home care guy is going to order me some. I can't believe it. I just hope they don't realize they are more money and decide we don't need them. Its not medically necessary, blah blah blah blah. I'll take them while I can because they are fabulous!
Check them out...
They have an oxygen attachment right on the nose. And a little trap door you open so you don't have to take the nose off to suction. I still take it off, habit I guess! And the best part, the tubing is not on the side where he can get his little hands on it.


The old oxygen tubing.

I almost had a heart attack yesterday. I got a letter from my insurance stating that Tobi was no longer going to be a covered med! I about died. Tobi is a very overpriced med, that has proven to be very helpful for Jax. It said that only CF patients would be covered. Hello, there are other lung diseases besides CF. I immediately called my insurance. The lady told me I was fine, that the letter said they would no longer be covering it for sinusitis, but other lung issues were still covered. Well, that's not what the letter said, but as long as its still covered, that's all that matters to me! Why we must fight so hard to get things our children need to survive is beyond me!

My ped also told me yesterday that Jax was going to give her a heart attack. I guess heart attacks are going around right now ;) Something is not right with him and she's bound and determined to find out what it is. Respiratory-wise he is doing ok, I'm still having to turn him up at night, but during the day he is fine. Sunday he fell asleep at 1:00 and slept until 7:00! He was cranky the rest of the night, and when I put him to bed at 10 he still went right to sleep. He is still on continuous feeds. We haven't even tried to go back to bolus because I'm still pulling 50 cc's out of his belly, and his feed runs at 40 an hour. So he's still not moving things along. His albumen level has steadily gone up, which is a nutrition sign. That would explain the new puffiness. When your albumen level goes up, you leak fluid into your tissues. I guess that's better than a cardiac reason of retaining fluid. But he is already on way more calories than a normal kid his size, so why is his albumen level high?
More labs are ordered for today. I don't know how much longer we are going to get blood out of this kid. I'm surprised we've gotten is so far. My ped won't listen to me and put a port in. She thinks the infection risk is to high. Well its not as high as a line, and he only got line infections in the hospital. When he was home with a line he never got a single infection. I am much more vigilant than hospital staff, trust me. So one of these days we are going to need labs quick and have no access to get them. But nobody listens to me!
We need to figure whats up with him before I go out of the country. My ped agrees and we are working hard to figure out what it is!

18 comments:

Melissa M said...

I don't know much about trachs but can see where the new oxygen tubing would be much more convenient!

Denise said...

Well...I am no trach mom but I can sure see what a difference that new one makes. It seems much less cumbersome. Do you think that Ella will still be able to pull it off though :)You know that is her favorite thing to do!! In answer to your question about Ella still driking a bottle, yes she does as that is her only means of nutrition since she still doesn't eat any solid foods (besides playing with them a little bit yesterday). But most of the other Ds kiddos eat earlier. It seems that the orphanage kids are forced to eat on their own earlier so Makayla may be eating solid foods but I would think at her age, she would still be on a bottle. Hopefully you can find that out ahead of time so you know if you need to stock up on bottles or not. Love those pics of Jax...he looks so alert!!

Kelly said...

Nope, I'm not a trach mom either, but WOW what a difference. Looks much more convenient. Good luck with that new discovery!!

Mr. Jax, are you poolside in those pics checking out all the bikini babes??!! Ahhh, something tells me you are going to fit right in, in Cali. Too cute!!

Lacey, in response to your question about the bottle, Landon is 17 months old and, YES, he still takes the bottle. UGH!! (Unless you give him a Capri Sun...lol) You could always buy a 4 pack of bottles, a sippy cup and a straw cup. This way you will be prepared but can return anything you will not need (without spending alot of money)!!

Cammie Heflin said...

It is so wonderful when we find things to make our kiddos special stuff easier! Jax looks great even though he's not feeling the best. Wish you could get a line, it would be easier. Addy got a hominus staff infection in a central line once and it was awful. However, she was in the hospital!! They are so full of nasty germs!

April said...

Oh I'm so sorry there are so many questions.... It's so hard to puzzle things out- we're trying to figure out what's going on with Caleb right now too-- always an adventure!

Emily said...

I also don't know much about trachs... but it looks fabulous! Glad he was able to fit a little bit of swim time in. Too bad it was on the chilly side.

Anne and Whitney: Up, Down and All Around said...

oh i was hoping jaxson was feeling better and that you had figured out what might be going on. i really hope the most recent labs will give you guys more of an idea of what might be going on with jaxson. glad he was able to come to the pool party and at least try out the pool :) i also hope the tobi and the new oxygen things for the trach continue to be covered!!!!!!!!!!!!

Colleen said...

That is so cool! I will have to maybe see if my supplier carries something like that. Isaac doesn't usually wear a nose though unless we are going outside, otherwise he wears his pmv or his regular 02 mask.

Skye is the Limit! said...

Hey,
I saw that you said Jaxton is on Trazadone, I called about them putting her on it and they said she was too young. I didnt talk to her main doctors though, so I will wait tomorrow. If you have any advice I appreciate it!!! <3

The VW's said...

That new O2 attachment is WAY BETTER! Hope insurance will pay for them!

Cute pics of Mr. Jax! Tell him to stop causing trouble over there! No more guessing games Jax! Just tell your Momma what's going on with you!

Hope you and the doctor are able to figure it out soon! Hugs!!!

Anonymous said...

I am so excited that you have discovered the noses' that have the O2 attachments.

I have been following your blog for so long and am constantly rooting for your little man!

A forum that you may find helpful, is http://www.tracheostomy.com/forum/index.php

It is a very active forum with kids ranging in ability and stages in traching and ages. Those ladies have so much knowledge and they are great at passing along supplies if you need to try something out.

I hope it helps you out at some point.

Stevenson Family said...

Wow..the new trach looks great!! I can see why you love it so much. Also, I'm praying you guys can get some answers quickly to save all those heart attacks!!

Tina said...

I'm not a trach mom but the new one definitely looks more compact and neat and I can see how the tube doesn't get in the way either. I really hope you manage to get some answers about Jax and his health issues and soon too.

I love these pictures of Jax sitting up, he's so lovely. Sending especially big hugs to this young man :)

Kele@ said...

ARG~ I sure hope they figure it out soon. So happy you found the HME from Colton's mom, let me know if you can't get them from your home care company.
He looks so cute in the previous post, in his denim jeans and shirt... so grown up!!

Corinne Judy Smith said...

Wow, can't believe how nice the new tubing is. Looks like it would be a lot more convenient. Too bad the water was too cool for him, but he looks pretty cool laying poolside.

Skye is the Limit! said...

Hey!!
I have so many questions, could you text or email me?!
kaylamessineo@yahoo.com
4012126718

Michelle said...

I hope you're able to get that new tubing - it does look like it's a much more efficient way to have a trach! and praying the ped can figure out what is going on with Jax!

Junior said...

so hard when you can't figure out whats up. Lots of prayers and hugs.
Love the pics of Jax ready for his swim.