Tuesday, January 26, 2010

Trach advice please!

One great thing about blogs is not only meeting new friends and being a big support group, but a place to get advice from people who have been in your shoes.
I need advice from trach moms!
Jax coughing is making me crazy! Sunday night he coughed all night long. His airway is red and irritated, and we think thats why he's coughing. So his pulmo wrote for flovent. I thought that was a weird inhaler to write for, since my asthma kids are on that, and I know of so many other nebs and inhalents that trach kids are on. Its not working, so his pulmo wants to try oral steriods for 5 days and see if that works. But I don't really want him on that long term. So what are your trach kids on for inhaled meds? And is there a specific one for irritated airways? I'm losing my mind!
Also we had a new nurse come out last night. She was very nice, but she's one of those paranoid nurses. One that I wouldn't want with me if something bad was to happen. I think she would freak out and I would be the calm one. She woke me at 3am and said he had a fever. So we gave him tylenol, and when I was helping her get it, she was trying to hurry me saying "I really want to get this in him". Seriously, is 30 seconds going to hurt? NO!
And this morning I looked at her notes. 99.9 was how high his temp was. Thats not a fever! I just got through telling her that his body thermometer was broken and that being on the warm humidifier and night kept him quite warm. She obviously didn't listen. I don't think having her here helped me get any more sleep than normal.
Oh the frustrations.
On a good note we got our paperwork to go get our fingerprints today. So we'll be doing that this afternoon! So for all you adoptive parents. How long does it take after your fingerprinted to be finished with the home study? Thats all we are waiting for, and I really want to get it faxed to DCSF this week!


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

Out timeline - yes I have it saved on my computer...
*March 14, 2008 - mailed application
*April 2, 2008 - adoption orientation
*April 17, 2008 - initial interview
*April 18-19, 2008 - education classes
*April 20-May 21, 2008 - completed online forms
*May 29, 2008 - home study
*June 5-6, 2008 - physicals done
*June 9, 2008 - background checks submitted
*June 12, 2008 - Kristin's interview
*June 14, 2008 - education classes
*June 17, 2008 - Steve's interview
*September 4, 2008 - Background checks back
*September 5, 2008 - DBM letter & collages to agency
*September 9, 2008 - Check up interview
*September 18, 2008 - Committe approval

We obviously didn't do things in the same order you are...

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

{Sorry for all the deletions - my fingers can't type today}
and to add...
April 21, 2009 - got the initial call about Max
May 1, 2009 - picked up Max in TX
May ?? 2010 - finalize adoption(hopefully - if all goe well) - (TX law is different than UT - it takes a year to finalize, not 6 months)

ANewKindOfPerfect said...

I don't know anything about trach's or adoption, obviously. But I do know that a nurse who is that panicked over a 99 temp is NOT a good nurse. Like you said, in an emergency you would have to spend energy on calming HER! No good.

You guys are working to adopt this little girl, not foster right? I am seriously excited for you!!

The VW's said...

Nursing in your home is supposed to help make things easier on you, not make things more stressful! Sorry about this!

Hoping the paperwork can be done quickly! You must feel so anxious waiting to know if this little girl will be yours or not!

As for trachs, I don't know anything, but Gavin had a bad cough for almost a month and a couple of weeks ago I took him in and asked for oral steroids and after starting them he was better in a few days! Hope it works for Jax!

Gavin is on a daily dose of Pulmicort, which he gets per nebulizer every day. This is a steroid breathing treatment and it seems to do great for Gavin. You might ask for this to try out? Gavin also gets Atrovent and Xopenex per nebulizer before the Pulmicort. This helps to open the airway before the Pulmicort is given. Hope this helps!

Love, Hugs and Prayers!!!

My Three Sons said...

Well I'm not sure on the trach but Carson takes 2 puffs of flovent 110mg, twice a day. I was told even though it's a steroid, it will not be enough to worry with growth.

Good luck on the paperwork.

As far as the nurse, if you can't get a different one, maybe she will relax once sh is more used to Jax???? (Just trying to sound positive)


Kele said...

Lacey, I am not a Trach Mom but I am a Respiratory Therapist, so I know my fair share about the whole trach / airway thing.
First off, I don't see the corralation with the flovent and the irrated trach, if he is coughing because of true congestion he needs nebulizer treatments through his trach, not an inhaler... if it is just a tickle in his throat from some minor drainage that is making him cough then perhaps something to dry him up, singular or xyzal, furthermore, that wouldn't be the cause of a red trach. As far as the red trach, DON'T use lots of peroxide, just keep clean with saline and dry, without a lot of guaze if possible, keeping it open to the air.
As far as nurse that seems apprehensive, please, please address that immediately with your home care company. Many nurses are scared to death of trachs, fear and caregiving DO NOT make a good match in an emergency situation.
Hope some of this helps, please feel free to email me and I hoped this helped some?!?!
SOOOOOO excited to hear the adoption is going well... still anxiously waiting to hear when your bundle of pink joy is on her way!!
Give Jax a hug and kiss for me, I wish I was there to come by daily and take care of that precious little man!!

My name is Sarah said...

Oh the memories. This is Joyce. One of the first times we were going to leave Sarah, I decided for my own comfort that I needed to know that the nurse would be able to change the trach if it should come out. So I waited until she got there to do trach care that day. As soon as I pulled the trach out, she took a few steps back and thankfully my husband walked into the room just as she was about to pass out on the floor. He had to help her to the couch to lie down and recover. Needless-to-say we never left that night and we never saw that nurse again:)

Is Jaxson getting mist at night?

Colleen said...

Uggh! I can't deal with paranoid nurses at all! We have had our share of them and I've just had to tell the agency not to send them back. Seriously, if they are going to take care of a medically fragile child they can't be freaking out. This makes a parent very uncomfortable.

I'm sorry I don't have any advice on the irritated airway. I wish I did!

Anonymous said...

This is a WONDERFUL community and will open you up to a whole new set of bloggers who have had kids trached since birth and will be lifers.
I really think it would be an awesome place for you to join, if not just lurk around and read.


Jessica said...

Decided to de-lurk for this one...

Definitely go with your gut instinct as far as not trusting the home health nurse. If she doesn't feel comfortable taking care of hime, she shouldn't.

I'm a NICU nurse, and we recently had a heartbreaking story of this type come through our unit. One of our former premies (who was on the unit for months, went home with a trach), got re-admitted with severe brain damage post-cardiac arrest due to the home health nurse putting his trach in UPSIDEDOWN during an emergency change at home.

Not to scare you or anything, but this Mom hadn't trusted this nurse, and was still getting used to everything herself as they had only been home from the NICU for just over a week.

You have every right as a parent to call the agency and ask them not to send somebody back.

Tina said...

Can't help you here but I do hope and pray that Jax gets some relief very soon. I agree that along with the support and love one finds here it's also the greatest place to come to when one needs advice and help in dealing with areas new to us. Big hug to Jax.
The night nurse does sounds a bit unsettling, just imagine what she would do in a real emmergency!

Sasha said...

No Trach advice but just wishes that everything gets sorted out with his cough and the nurse.

Trina and Jophie said...

First question girlie....Does his cough sound like a baby velociraptor from Jurassic Park?? Jophie did that in the beginning. He had so much trouble for 6 months after placement. His airway was bleeding and so irritated/messed up. Took us some time to figure out it was the trach literally boring a hole through his airway. UGH.....He can use ONLY Bivona trachs. OK so sidetracked here. Back to the cough. When Jophie gets a tracheitis his cough turns into that velociraptor sound.(I hope you've seen the movie so you'll know what I'm talking about) On the meds Jophie takes Alubuterol and Intal(Which by the way they discontinued)...Lovely He's also on a duo-neb which is just a mix of Atrovent and Albuterol. The atrovent literally has kept him out of the hospital ALOT. It works great for kiddos who have lots of lung restriction. Cortef(Oral steroids) for his failed adrenals BUT they were orignially used because of the lungs and continue to help them. And, lastly flovent which is another we couldn't do without. I have a little secret about delivering those inhalers to trach kiddos. I came up with this little "gadget" when he first came home with is trach. If your having trouble that way just let me know. I'm not comfy telling you here because we've been working diligently trying to get a patent for it. Wouldn't want to give away this little secret before we get all the i's dotted and T's crossed :0) P.S...Jophies thermostat is broken too so the temp thing is one of those "only mommy knows" best kinda things. I'm very fortunate to have close friends who have been Jophies nurses from the get go. I did have a wacko one that lasted a whole week before I dumped her. Our search continues for another keeper. I hope you can find one you can trust too! Sorry this is all over. Just like me all over the place. Gotta scoot girlie...Hang in there. Hugs, Trina and Jophie

Tina said...

Perhaps you are already a member, but if not check out the trach forum at
I am sure there will be a huge amount of information available there from other trach parents
also saw some other Tracheostomy Blogs http://myversionofmylife.blogspot.com/
perhaps you are already in touch with the moms, I realised just how invaluable parents experiences are, something even doctors cannot give us at times.

Sakura said...

Jaxson is so cute! I bet that nurse is just making things a lot more stressful for you.

April said...

Hi Lacey-
I know of you through my Friend Becky Orton, I have a little boy similar to her little boy, Ben.... We have a trach and my little boy has airway issues as well. We use Flovent 2 times daily. It has seemed to help with his coughing and wheezing. I also use xopenex for breathing treatments through his nebulizer. I have atrovent to give PRN as well. I bet we have the same doctors at PCMC!
Hope things get better soon! Hang in there! :)