Wednesday, August 4, 2010


Oh friends my head is going to explode! I feel like I'm being pulled two different directions by two different doctors. Although they agreed to work together with this problem, I still get different perspectives.
My pulmo thinks this is a huge problem. My cardio thinks its not so bad. I think pulmo is more worried that it will progress if we don't stop it now. I'm pretty sure we are going to get the vent. I'm not to excited about this. It just makes me see that his health is declining rather than getting better. The vent is a big step, and not one I want to take. I called about our only waiver program we have. Jax is on the waiting list. They told me he was number 15! That's actually farther behind than he was a few months ago. Because if a vented kid comes on that will bump a regular trach kid back. So basically we will sit on the list forever, unless he gets the vent. Even if he gets the vent he still only moves up to number 11. So we are pretty safe in saying he won't get the waiver program until we move! That makes getting the vent even more worrisome. Because we still will get NO nursing hours!


They did a stool test today. This will tell a lot. Here comes the medical garb again. If he does have venous congestion causing the pressure to be high, he will be dumping extra fluid into his gut. So if this stool test is positive, its not good news. He will go right to the cath lab and look at his venous system. There is not a lot that can be done with those veins, and what can be done is usually super risky! If you start playing with veins and closing them, you could rupture one, or close one off accidentally that is vital in blood flow. That puts us between a rock and a hard place. If the test is negative, they will probably start the vent and see if that helps.
My ped asked if this new, scary stuff that's going on with Jax will make me change my mind about going to get Makayla. No way. I still want my girl! And as horrible as this may sound, if I lose my Jax, I need a Down syndrome child in my life. Of course she will never take his place, I've been wanting a girl for twelve years now! But I still need that presence in our lives as well as the sweet, pink, girl I've always wanted.
So for now we wait for this test result, which could take a couple of days to come back.

We have been looking into superleague baseball teams for Carter. Its hard, because there is still so much politics. A lot of these teams have tryouts, even though they know they are going to pick kids they already played with during the regular season, even if they aren't the best! He had a tryout tonight, and of course yesterday he starts having major asthma problems! I don't know if he caught a cold or if its just the asthma, but we started pushing steroids and breathing treatments in hopes it would help. It seemed to, a lot. He did great at the beginning of tryouts, but then the rain started, and then the lightening. Finally they called it, and we go back tomorrow to finish! That's good for him because it gives him another day of steroids!
But the boy doesn't stop, even if he is wheezing like crazy, he keeps playing the game he loves!


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

lacey - i so hope the stool test comes back negative and that somehow you can avoid the vent!!! sorry to hear the pulmonologist thinks it is more serious than the cardiologist - what does your "mommy instinct" say? thinking of you!!!!!!!

love the pics in the baseball uniform!

Stephanie said...

Oh Lacey! I just don't even know what to say.....I agree, trust your gut....I wish your state would get on the ball and provide the services that ALL of their citizens need.

Hope you can get to Cali soon. Hugs to all of you!

Steph and Christopher

Melissa M said...

I love all the baseball pics and I hope you get some answers and a plan for Jax soon!

Kristin said...

First - nice red ;)
Hope Jax isn't really declining, and if he is going to... I hope he waits til you get Makayla home to pull any big stunts :)

April said...

I'm sorry things have been so challenging- Caleb is on a vent at night & PRN with illness- let me know if you have any questions that I could help you with.... hang in there!

Heather said...

Hoping and praying for answers friend.You have so much going on right now and I know you are so overwhelmed.I worry about you but you will find you way through this and you will have BOTH of your babies home together before you know it.

Praying for sweet Jax.

Rochelle said...

Praying for good news from the tests for Jax.

The VW's said...

Praying for you and Jax!!!

Love the pics of Carter in uniform...Awesome!

Love, Hugs and Prayers!!!

Anonymous said...

Praying for JAX in Texas!!!


Meghann said...

I hope they can find the answers you need for Jax. (((hugs)))

My friends son plays on a super league team and is having the same problems with Politics... dumb!

Shelly Turpin said...

OK vents....a vent can be your friend. I think you will like it at night - I know that sounds crazy - but...there are less secretions with a vent. There are major alarms. Believe it or not, I think you will sleep better with him on the vent than just the trach. I always feel safer when Bella is on than when she is off. Crazy, but true.

I'm scared about the veins. I'm hoping Jax still has some time here on this earth. I really want to meet him in THIS life first :)

Thinking of you

ANewKindOfPerfect said...

Ugh - I can't believe that even on a VENT you can't get nursing! That is insane. Utah SUCKS.

I hope that Carter feels better soon.

Mama Mason-Mann said...

Oh lacey, what tremendous stress for you to be going through, and now of all times! My thoughts are with you. Can't help hoping and wishing you'd come out to Boston so I could finally meet you,, but totally understand your reasoning for going to LA. Certainly makes a lot of sense! Good luck with EVERYTHING! And it's Thursday, did you get submitted?

Anonymous said...

I LOVE YOUR FAMILY! I REALLY DO! :D I wish you all the luck in the world!

Kim Rees said...

Oh Lacey! I haven't checked on you guys in awhile and I am so sorry to hear about the troubles you are having. Keep your chin up! God is good and everything will work out ok. ((HUGS))

Alicia said...

I hope Carter's asthma clears up and the tryouts go well.

Sorry to hear about all the uncertainty with Jax's health. I am always praying. I hope the stool test is negative and the vent helps him out, if that is what it comes to.

ANewKindOfPerfect said...

Lacey, the ETHE1 test is a for sure. It's either a yes or a no.