Tuesday, August 2, 2011

Two tornado's!

Right now I have two tornado's in the house! Tornado's in different ways, but equally as destructive!
This little stinker is figuring out new and dangerous tricks!

She's now figured out how to get her legs over the side of the stairs, so she thinks she can go down. She's lost the fear she once had. But trying to get my stairs blocked is going to be difficult because my staircase is wide, and the railing on one side doesn't really fit a gate.
Yesterday I put water in the tub to give Jax a bath. When I walked into the bathroom with him, someone else thought it was her turn to take a bath. In her clothes!
Hi mom!

Oh, its not my turn?

Jax. Well Jax is Jax, always causing trouble!
I should be thankful that he's been home for a long time. We haven't had a hospital stay, besides his surgery, in months. Definitely a record for him. But when you have lifesaving equipment in your own bedroom, its like being in a hospital every day. Equipment that for normal kids, is only used in the ICU.
He's had his longer trachs for a few weeks now, and they have done nothing to fix the coughing. He goes for a few days with no problem. Then the coughing starts, and he coughs day and night! The bad part is its getting worse. Now he even coughs on the vent, which means the PEEP from the vent that keeps his airway open, is not working well.
I have my emergency meds that help me to not totally lose my mind. Robinol to keep the secretions dry when he's coughing so much, and his trazadone, to knock him back out when he wakes up in the night coughing. But sleep is still scarce during these episodes, and I can't live like this forever! If your my friend on facebook you probably saw some video's I posted there. I'm not going to post them here, just because I'm tired and to impatient to wait for blogger to load them!

I took him in to his ped yesterday, after he coughed so hard that he vomited right past his nissen. She is so wonderful. We know its not allergies, because prednisone doesn't help. She is out of idea's, but she is going to contact the specialist's that may. She wants his nissen checked to make sure its intact. She's calling pulmo, to get her input, and I'm calling ENT and our trach/vent coordinator to see what they can do.
We read his bronch report together. It says that he has severe narrowing around the corina (the bottom of the airway where the lungs branch off) and down both sides of the lungs. These are area's that can't be fixed with an airway surgery, they are too far down. The only way to help narrowing down there is PEEP, which means the vent! If he had to go on the vent 24/7, that would not only be huge pain, but a ginormous step in the wrong direction! But when we were in the ER last week, he was asleep and on their monitors. I watched his sats drop into the 80's for a minute or so, and then come back up on their own. He wasn't on the vent at the time, because I don't take the vent with me when we go out. And I don't usually put a monitor on him for his naps, especially if we are out and about, because I don't take the monitor with me either. So I may be missing episodes that he is having.
I'm going to ask ENT today if its possible for the airway to continually get worse. I just don't understand why the coughing is getting worse, and why for 4 years before he was trached, he didn't have this severe of a problem with his airway. We knew if was bad, but not this bad, and it makes me super nervous as to where this could be headed!

On a good note, a few days ago before the coughing episodes started again, he had some good standing in his stander. I put his favorite toy on the tray, and he is grabbing more and more! I'm not sure if he's deliberately trying to put the toy to his mouth, or if it just gets caught on his fingers when the fingers go to the mouth. Either way, its great grabbing!!


And I just noticed that his eyes aren't really open in any of these pics! Nice picture taking momma!


Twilson9608 said...

I like all of your pictures and your kiddos are as cute as cute gets. I know it probably wasn't the greatest moment pulling out a fully dressed but soaking child, but It made me giggle. What a sweetie. I look forward to all of the things you talk about and all of the stages to come!

Scrappy quilter said...

That little stinker is going to give you a run for your money. She is priceless. I hope things improve for Jax. He is such an incredible little man. I always enjoy the pictures you share with us. Hugs

Not a Perfect Mom said...

All of the coughing and stress aside, I can't believe how much Jax has thrived these past few months...
and Arina...oh Arina...gotta love her!

Becca said...

Arina just cracks. me. up!!! That girl will seriously keep you running. Sorry about the coughing problem. I hope someone somewhere can figure it out and help him! I love all the pics, too - beautiful children.

ParkerMama said...


I find that the dumb sat monitor is pretty much my best tool for indications in Parker's health. I hate the sucker, but it is invaluable for giving me a heads up for what is coming down the road.

Do you by chance have a portable one?


Tammy and Parker
@ParkerMama on Twitter

Junior said...

Hope you can get that coughing figured out with Jax.
Love the pics, those two are just soooooo cute.

To Love Endlessly said...

At least they are cute tornados!! Praying that nasty cough gets figured out. So great to hear you have a doctor that listens and cares for Jax!

Melissa said...

I hope you get Jax's coughing figured out soon. Love Arina in the bath tub in her clothes!

P. Preston said...

Sorry to hear theres this unidentifiable trouble with your little Knight! Remembering him and his troubles in prayer!!

That little princess of yours is just too adorable!! She seems like a little ball of hilarity. love it! She's so PRETTY!!