Tuesday, March 16, 2010

No relief in sight!

Well that was one of the most unproductive appointments ever! First of all, the ENT's here are known for their extremely slow clinic. Its an all day event to go there and back, and its a lot of sitting in the waiting room. Good thing about sitting though, we saw Bugg! A new blog friend that lives close by! So me and his mommy had a nice chat.
But basically the results are that there is nothing that can be done. He just needs to grow and get bigger..
Grow...
Jax...
Yeah, he hasn't grown in the last 3 years. My boy with the deceiving fat cheeks caused by his SVC syndrome. The surgery is to fix the narrow part of his airway, there is no surgery to fix tracheal malaysia. If tracheal malasyia is bad they trach them. Well he's already trached. His airway is hitting the trach, causing him to cough, the more he coughs, the more the airway flops, and on and on and on! They can do lidocaine in a neb to make the airway numb and help the cough, but thats not something you can do all the time. The ENT was pulling other things out of his butt to try. Like making the trach wider, pushing more on the airway and keeping it open. Both the lidocaine and the bigger trach will make his voice nonexistant. Nice! We haven't even been able to figure out how to talk around these trachs yet. Well the trach nurse went to put the bigger trach in and it didn't want to go in. The whole time she's pushing, he's not breathing, she finally gets it in and causes him to bleed like a siv! Blood is pouring out of his trach and his mouth! She's suctioning his mouth and I'm using my suction to suction out his trach. This whole time he's not breathing!

"sigh"

So now we are home, with nothing to fix this hacking cough. We got him cleaned up and in a fresh shirt and he was out for the count. Rough day!

27 comments:

The VW's said...

Poor, tired and little man! Sorry it wasn't a great visit! I wish that they had better news for you! Love and Hugs!!!

Rochelle said...

Bless him. So sorry for appt that wasn't helpful. Will keep praying for him.

Mommies-Miracles said...

I'm so sorry to hear that the visit did not go well! And why didn't the nurse get a doctor? Poor little guy!

stephanie said...

"SIGH"!!!!!!!!!!!!!!!!!!!!!

The Lehnick Family said...

((((((HUGS!))))) Prayers are alwasys with your family...Love you Jax!

Denise said...

Poor guy!!! It is not fair!!!! He deserves a break right now!!!

mandd3 said...

Oh, what a horrible experience! That sounds like an awful clinic. I hope you both get some rest. I'm so sorry that they gave you no real options. Any chance of getting another opinion?

Jessica said...

Poor little man! ounds like a rough day. I wish you could explin all of this to him, the why's and the becauses. He is such a strong boy. Big HUGE hugs to him!!

Michelle and Sean said...

How horrifying!! I'm sorry you and Jax had to go through that! I hope things are better now that he is home!

We have the same trouble with the ENTs. They tell you something and then everything changes! Nothing ever makes sense.

I hope things get better soon! Or I hope that maybe a move is in the near future for better medical care. My husband and I sat down and put a couple of the hospitals together that we would like to move to and transfer care. Maybe someday we will get to one of them.

Junior said...

Poor little guy he looks exhausted. Hugs

kecia said...

i am sorry there was no help in sight! that must be so discouraging! No wonder he is so tuckered out!

Alison said...

Sorry you didn't find a solution and had such a stressful day.

Bugg's mama said...

Oh, oh, it was such a delight to meet you & Jax today! I'm so sorry it was such a bogus appointment. How awful!

My only regret is that I didn't kiss Jax's cheeks!

Love, Bree

April said...

Oh I'm so sorry it was was a rough one! Hugs to you both!

Alicia said...

Oh my goodness, how super frustrating! I am so sorry you and Jax had to endure all that today. Sometimes, there is no easy way, is there?

Prayers and hugs...

Emily said...

Lots of love being sent your way...

ParkerMama said...

Lacey,

I'm confused as to what surgery to fix the narrow part of his airway?


And you are right.....the ENT wait up there....ugh.

We still haven't come on a solution for Parker's aspiration. sigh...

Is the coughing something that mucks with Jax's health?

I'm surprised that C forced the larger trach so hard. They never want to up Parker's size, even after the trach stoma revsision surgery he had.

I'm so sorry it was a miserable appointment. Those suck the most.

Tina said...

So sorry to hear about everything Jax had to go through, breaks my heart. I hope he is feeling better today.
Love him in his mickey ears beannie, so so adorable :)

Ruby's Mom said...

Oh,my,gosh!Poor Jax and Mommy!"sigh"

ABandCsMom said...

Sorry to hear that it didn't go so well. Poor little guy, no wonder he was tuckered out. How did you NOT freak at that nurse. I would likely have busted her one upside the head!

sturpin said...

oh - poor, poor Jax. I hate suctioning blood - hate it.

Poor little man. HOw I wish there had been something - anything to do to fix it.

Sorry little one.

ANewKindOfPerfect said...

Oh Lacey! How horrible that must have been. I'm so sorry. Poor Jax, look at him passed out on the floor!

I'm sorry that there is no easy answer on how to fix his breathing problems. That breaks my heart. :(

In lighter news, yay on meeting Bugg! I am extremely jealous. I just found her blog too, and boy that kid is adorable! His hair looks just like my kids, huh! :)

ANewKindOfPerfect said...

Lacey I just read what you wrote to me about coming in April. YAY! What week is it? Jacob will be so excited. And that it's the same week as the Riverside testing, it's FATE! :)

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

oh my gosh, what an AWFUL appointment! so sorry for you and jax! he just looks like he has been through the mill in the picture with him sleeping - i hope somehow things will get better with his breathing and cough!!!

Anonymous said...

Poor little guy. Sending good thoughts your way.

Love to all,

Jenefer in San Jose

Heather said...
This comment has been removed by the author.
Heather said...

Missed a call from you yesterday.Caller ID tells me so and being the less than stellar friend that I have been lately ... I haven't checked my messages.Lord help me if it was an emergency.

Miss you guys.hope little man has rested and recharged today.Talk to you soon.