Tuesday, May 25, 2010

Trachs and such

Please pray today for my little friend Carter. His bronch yesterday was not good, and his tracheal Malaysia is horrible. His family has some decisions to make now. It felt like someone hit me in the stomach, because it reminds me of not long ago making this decision for Jax. It was an extremely hard decision, and one I still sometimes regret. You know it hasn't been easy for us. There are many days were I hate the trach and want to rip it out. And a lot of Jax trach problems are due to his severe tracheal Malaysia. His airway collapses around his trach and makes him cough and produce more junk. Which means almost constant suctioning! We finally got the robinol yesterday. The crazy thing is about an hour after I gave it, he seemed junkier than ever. I was freaking out wondering if kids ever have an opposite reaction to it. Or maybe this happens at first and then it goes away. But I basically had to sit by him and constantly suction him. I'm also calling me ENT about the lidocaine neb. I need some things in my arsenal to try when things get bad, otherwise I'm going to lose my mind. Especially because we are going back to California in less than two weeks. We have a wedding and then of course days in Disneyland with our season passes. In March when we traveled with the trach it was a huge pain. Because although the air is better there for a trach, you are still changing humidity on him and it takes time to get used to it. I just remember sleeping next to him in the hotel so I could constantly suction him. It was not fun. So I plan on having all the drugs to combat that so we can have a good time!
Our new trachs came yesterday too. I really hope these help. I'm not so sure though. They are a little bigger in diameter. We are trying to open his airway more now that we know this size will fit. You know, after the nurse shoved it in and made him bleed all over the place! The size trach he has now is newborn size. And the new one is still infant size,its actually the size they intubated him with when he was 4 months old! So he actually went down a size because of the narrowing in his airway from frequent intubations!
Here you can see the difference in the trachs. The one on the right is a normal trach. The left is his old custom trach. You can see how much longer it it. We are trying to bypass as much of the trachea as possible.

This picture is his old and new customs. You can see the one on the right is a tad bigger around. Our hope is it will push the airway open and help the coughing fits. We'll see! But look how tiny the holes are compared to my fingers. How in the world to you breathe through that tiny hole?!

Echo tomorrow. Send good heart vibes and good pulmonary pressure vibes please!!

I'm still working on sending out all the auction items. Email me if you haven't heard from me yet. Also, the bows are up on Makayla's blog to buy. They are in the right hand corner!

19 comments:

Becky said...

Sorry about your continued trach problems. I dealt with CONSTANT suctioning for FIVE years. It wasn't until we realized that he had a neurogenic bladder - completely separate issue and started him on ditropan (he was on robinol) that the suctioning decreased almost by 95%. We stopped the robinol because ditropan (used for bladder) has the same affect. It works WAY better. Anyway, I feel for you. Not fun. We also went to a cuffed trach and kept the balloon up because it helped from his secretions slipping down the sides of it into his lungs causing his contstant coughing fits. I KNOW YOUR PAIN!!!

Junior said...

We have been praying for Carter, I couldn't believe it when I read the post on their blog yesterday, so devastating.

Wow those tubes look so tiny.

Rochelle said...

Praying for Carter and for your appt! Good pressure vibes coming your way!

Kristin said...

Good luck tomorrow!

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

i hope everything goes well tomorrow w/ the echo. also - sorry everything w/ the trach just seems to e so difficult, i hope someday soon he could breathe through his own airway w/out the trach!!!!!!
i don't know carter but i am going to check out the link you included and send prayers for him and his family!

Alicia said...

I am praying for Carter and his family. Such agonizing decisions.

I hope the new trach will help Jaxson's coughing problems. I know you struggle with this every day.

Praying for the echo as well.

Hugs...

The VW's said...

So sorry about all the trach issues! I don't know how you get anything done when you are always suctioning?! I hope and pray that the new med helps a ton for him! Praying his echo is good too! And sorry to hear about Carter! Love, Hugs and Prayers!!!

ANewKindOfPerfect said...

I hope his new trach helps a lot. Those tubes are teeny, it's hard to believe he breathes through them. I couldn't believe Carter's update, I was so sad when I read it this morning. :(

Emily said...

Good vibes being sent your way. Loads of prayers for sweet Carter.

Evie's Story said...

You deserve an honorary RN degree!

and a salary to go with your day job:-)

Anderson Family said...

Good luck with the echo! Sorry you are still suctioning and suctioning. Hoping things get better for you before California. We have been praying for Carter too!

Also, I think something may be wrong with your Jaxson's blankies for babies blog site. His button picture won't show up on my blog - it is just a big white blank with photo not available message. When I click on it I go to the website - but it looks the same way. Big white - photo not availabe messages everywhere. Just in case you didn't know - I thought I would pass along the info...

DevonLeah said...

hope this trach is better! I hated going up in size...felt like I was hurting him, but he did it fine. Is that new one a shiley? what size is Jax now? ((hugs))

ParkerMama said...

Every time I read about how much you hate that trach my heart hurts a little bit. Especially since I was one that you talked to in your decision making process.

I'm so sorry that you are still having suctioning issues and hope you can get this under control.

For Parker the trach has been fantastic and a literal lifesaver. I'd freak out if they ever wanted to decanulate him. =:O

MASSIVE good number vibes on their way.

Not THAT is something I can totally feel you pain on!

hugs~~

Jessica said...

Lacey thanks for the comment on my Blog, It kind of made me laugh! I have my fingers crossed that tomorrow will reveal answers. Watching you with Jax is so amazing you truley are an amazing woman! (not sure if my payment posted, It kept sending me to Pay pal please let me know)

Colleen said...

We just got Robinol for when Isaac has a cold and we are constantly suctioning. I never really liked it though when they gave it to him in the hospital, it made his secretions almost like glue.(yuck) Carters post hit me hard too, continuing to pray for the little guy.

Alison said...

sorry to hear about the trach woes - all that suctioning would drive me nuts.

I hope you get good results at the echo tomorrow.

suelmayer said...

Wow, looking at those tubes I pictured what it would be like breathing through a small straw. I will keep Carter in my prayers too!

Denise said...

Whatever size you want or have....around 4x6 probably.

Trina and Jophie said...

Have you tried the Bivonas girlie? Jophie had same probs. He originally was given those nasty Shileys. UGH...Might as well have PVC pipe crammed down your neck. Those darn things was causing him so much pain/secretions/noises and just plain misery not to mention it nearly bore a hole through his airway. He ended up in surgery to try and repair the damage the Shileys caused and was then given the Bivonas and we also went down because his was waaay to long for his tiny airway. He's 17 and actually only wearing a pediatric 5.5 Bivona. They are soooooooo soft and pliable. They are made with silicone rather than plastic and conform/bend to the shape of the childs body and NO rough edges only very rounded smooooth ends. These literally changed his life as well as my opinion on the trach. We had to fight a bit to get them and even still we only get 2 per month.(He needs 4 so we can change weekly due to compromised immune system ect.)