Wednesday, May 5, 2010

Rolie Polie Olie!

Things are getting a little better trach and respiratory-wise around here. Tobi has been our life saver! I think Tobi is going to be a new part of our daily regimen. The only bad thing about Tobi is its the longest neb I've ever done! Which takes a lot of time out of the day because I can't plop it on him, I have to sit and hold it because he can't sit upright. The other thing is it has to be refrigerated so its a cold neb and Jax hates it! He doesn't cry, but the kid never cries, he just squirms like crazy to try and get it off! I'm grateful that we found something that works (for the most part) after oral steroids, nebs and nasal sprays did nothing. He still sounds horrible though, and I can't figure it out because he's not sick. We may be paying pulmo another visit to check things out! The one thing the Tobi has helped the most is his saturations. He is back to baseline, which is I can take his oxygen off to put him in the tub (about 10 minutes) and he keeps his sats up. The last couple of weeks he just plummets seconds after his oxygen comes off.
We are all anxious to know what his pulmonary pressures are since the trach was put in as well. But unless my ped can move our date up we won't know until July! Thats the first time we could get an echo scheduled.

When talking to my ped we also talked about Jax health as he's grown. We were both pretty bummed to realize he's actually on more oxygen now than at birth!
At birth, before a major heart repair, he was only on 1/16 -1/8 of a liter. Thats barely a wiff. But we didn't want his sats too high to prevent major shunting of blood through the heart. But man when you took his oxygen off he dropped to 60 in seconds, it was crazy stuff!
After his heart repair and 4 months on the ventilator, he came home on 1/2 -3/4 of a liter, pretty good considering what he'd been through! Over the next year though we were able to wean him back down to 1/8, and we could even take him off for a few hours a day and he would keep his sats up. Then it was after the next horrific hospital stay were we almost lost him for a second time! They were unable to ventilate him but instead of putting him on the oscillator and saving lung tissue they were shoving pressures (peeps) of 15 down his little lungs! Thats as high as the vent goes! But even then he came home on 1/4 of a liter ( we are slowly trending up again)
Of course when we got closer to needing to trach him he was on ungodly amounts of oxygen. 1 1/2 during the day and almost 5 at night! You can't even accurately do 5 liters on a nasal cannula, we had to put a mask on him!
Anyway, I'm babbling! But now he is on 1/2 liters during the day, the most he's been at as a baseline. Thats not great news. He should be getting better as he gets older and stronger.
But the boy is a rolling machine! Its now getting kind of annoying because we are constantly rolling him back over. He gets to his belly and then gets stuck! And with no head control its not comfy being on your belly!
You end up with your face smashed into the carpet!

If your sick of adoption talk I'm sorry! But I'm excited to say that we just had another big item donated to us to raise money. I'm not going to say what it is yet, but we are going to give it away by drawing names from people that donate to our adoption. Like $10 dollars for one or $25 for three entries! It will be something that you'll want for a Christmas present (or for yourself!)
And the auction is going great, make sure to check back often so you don't get outbid!

12 comments:

Suzie & Lily said...

I LOVE him rolling over! Lily has pictures of her items on her store page if you just want to take those. Dog, Ladder to Heaven tee & Lily's Life is Great tee:-)

Junior said...

Lacey we had troubles like that with Junior and turns out he had a nasty little bacteria in his lungs that we didn't find until his last hospital visit. He would seem fine but his oxygen needs were crazy. Once they figured out the bacteria and got the proper antibiotic and since then he has done tobi regularly. Now he is off oxygen pretty much 24hrs a day for the first time in several years. Hope the tobi keeps doing the trick and gets his oxygen needs down even more. Hugs

Team Carter Jay said...

Making a trip back to our favorite lady huh? I hope she can figure something out for you.

Loving the rolling! Go Jax Go!

Becky said...

Wow...I'm so glad the tobi nebs are helping. I guess being on the vent has it's advantages because I can give the neb inline...no holding. I would get tired of sitting for so long. I hope his oxygen needs continue to drop!

The VW's said...

Great job rolling over Jax! Now, you and Gavin just need to learn how to roll back over on your own! :)

Hopefully after using the Tobi for awhile, his lungs can heal a little and maybe he can get down on the O2! Doing nebs are such a pain, but I'd rather sit there for an hour a day, then be in the hospital fighting something, that's for sure!

Great idea about the raffle! What is the surprise item?! Don't make me wait too long.....patience is NOT my virtue! :) Hugs!!!

Michelle and Sean said...

I'm happy the Tobi is working a little bit. Thats exciting that he is rolling around but I totally understand how it can be annoying too.

I totally missed last Saturday pics. We have been sick and also had some family come into town. Hope those went well and for sure if you do it again give us a call we would love to be a part of that.

Just so you know I don't think its annoying that you keep talking about your adoption. Its a part of your life and its exciting. I think we are all just as excited for you. I can't wait to see your beautiful baby girl in your arms!!

April said...

Oh I'm happy the tobi nebs are working well. Those pictures were so sweet-

ANewKindOfPerfect said...

That is awesome about the Tobi helping so much! It is crummy that his needs are higher than they were, but hopefully they can figure it out soon.

I keep getting outbid on the auctions, GREAT news for you! :) I am so excited.

And the pictures of Jax rolling? Too absolutely cute!

Colleen said...

Tobi takes forever, but it's also a lifesaver!:)

Anderson Family said...

I just love pictures of the back of heads! So cute! I am glad Tobi seems to be working! Did I ask you if Dr. Pfeffer is Jaxson's pulmonologist? We have an appointment with her next week - our first one - and hopefully we like her and she will want to track our little guy!

And you just call me - we will plan a day when you can come over and paint SUMMER. It is easy and I have all the stuff you need!

To Love Endlessly said...

Poor kid, rolling all over! I love the title, Rollie Polie Olie is one of my favorite books!! So what sort of changes can you expect with his oxygen? Can they do anything to decrease the amount he gets throughout the day? Like, back to where he was when he was little.

Kele@ said...

I promise I haven't forgotten you and your sweet girl to be! I am slow you will find, but auction pics are coming your way soon... sorry!
Kiss Jax for me!