"Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be." - Shel Silverstein

Thursday, May 21, 2009

Might Have Spoken Too Soon


Well, unfortunately Marissa is not doing as well with her trach capped as she was a couple of days ago.  I'll try to explain this as best I can without this being too long.

From the second Marissa was born, she had stridor.  This was a squeaking sound when she inhaled.  Through every intubation/extubation it was always there.  The docs finally told us that the stridor was because she had moderate tracheomalacia.  This means that the cartilage in her trachea was not fully developed and was floppy, causing her trachea to collapse.  Ultimately one reason she needed the trach.  Once she got the trach, no more stridor.

Fast forward to Aug. 2008.  When Dr. P did the bronchoscopy, she said Marissa's tracheomalacia had resolved and the only reason she needed the trach at the time was her small lower jaw and chin.  She did not feel comfortable downsizing Marissa's trach at that time but said we could try capping to see how she did.  She did not do well.  We could hear her wheeze like someone would while trying to breathe around a stick in their throat.  She also squeaked, sounding like she did when she had stridor.  However, we never saw any of the classic signs of respiratory distress such as change in color, flaring nostrils, or retractions.  We even put the pulse-ox on her and her O2 sats stayed normal.  We decided she just needed a smaller trach/stick in her throat to breathe around, so we stopped trying to cap her until this could be a possibility.

Fast forward again to the beginning of this year.  We started hearing a small squeak when she would cry, laugh or play real hard.  She has had a leak around her trach for some time, which allows her to breathe out of her mouth and nose even without anything on her trach to assist her.  This is a very good thing, showing us that her tracheomalacia is truly gone.  It was around this time that we noticed her tonsils were very enlarged.  So we thought the squeaking came from the enlarged tonsils when she was breathing around the trach tube.  It made sense that the enlarged tonsils would cause an obstruction and thus the squeaking.  I did not feel the need to tell anyone about the squeak because we were going to solve the problem: we had her tonsils and adenoids removed in April.

It has been a little over a month since her T & A and we really haven't heard the squeak.  So we were very optimistic about the downsizing and capping.  As I said in my previous post, she did very well capping immediately after we downsized her trach.  About an hour and a half later, we started to hear a little wheeze/squeak.  We thought she was just tired and needed a break. Yesterday she did OK but the wheeze/squeak was more prominent.  Today it was even more prominent, even happening when she wasn't capped, but when she cried, laughed, or played hard, just like before her T & A.  Again, no signs of respiratory distress and her sats are normal. She seems to be handling the downsize well but the capping seems to be a problem.  We are going to see how she does over the weekend, maybe not cap as much, and talk to the doc on Monday.

I am trying so hard to not be scared and discouraged right now, but it is so difficult.  Just like many of our fellow special needs parents, Jeremy and I know all too well the game of thinking and hoping something good is going to happen, then getting our hopes up only to have them dashed as we discover a new problem.  Honestly, the trach and all that comes with it has become routine to us now.  It is a pain to constantly deal with all the extras that come with the trach, don't get me wrong, but it is just another part of our lives.  Sad to say, but we are pretty used to it.  

But, our little girl has fought so hard to overcome so much in her short little life and she deserves  a little something good to happen.  She deserves to know what it is like to breathe without a hole in her neck and a tube in her throat.  She deserves to understand what fully tasting something is like.  She deserves to eat, to know what ice cream and cake are at her birthday, to know what McDonald's fries and burgers and McNuggets taste like.   She deserves to learn how to swim and know what it's like to play in a sandbox or on a beach.  I am so scared that we won't be able to give her these things for a long time.  I am so scared that we have somehow missed something like subglottic stenosis and that is what is causing her latest issues.  I am so scared that her tracheomalacia is not really resolved after all.

Please pray with me that the issue she is having with capping is easily overcome.  Please pray that it is just the fact that she needs to get used to wearing the cap.  

Please just pray.


Any one of my family members can tell you that I am a drama queen.  I typed this out last night after a long hard day because I just needed to get it off my mind.  My drama queen brain tends to come up with impossible worst case scenarios when things don't look like they are going my way.

Having said that, yes Hope and Jenna, Dr. P would have seen something like subglottic stenosis or tracheomalacia during a bronch.  My crazy brain tells me that nothing is impossible in medicine and maybe, just maybe she missed it.  My brain is my worst enemy.  I need to not listen to it a lot of the time.  It is evil.  :)  

Jenna, Marissa's trach right now is the next to the smallest size.  I think the school of thought is that we need to have that "emergency back-up next size down" trach just in case the 3.0 comes out and won't go back in.  

Jen, capping with the 3.5 Neo did not go well either.  She is, now with the 3.0 Neo, starting to sound like she did with the 3.5.  Yes, it is incredibly small and that's what scares me.  If she is having this much trouble with the next to smallest size, is she ready for this next step?  If not, why not?  I will be trying to tap the minds of the parents on the trach board to get their take on this situation. And no, your comment was not annoying, you made me laugh sista!!  Just what I needed this morning.

Bottom line, I guess I also need to ask for prayers for myself.  To not go overboard coming up with all the disastrous worse case scenarios.  To just take a deep breath, like Hope knows so well how to do.  ;)  I am just so bad about pinning all my hopes on one thing  and when it looks like it is not going well, I just freak out.  Thanks for some perspective guys!

This blogging thing really is great free therapy!  Group therapy even!  :)

Oh, and Hope, I LOVE your new profile pic.   Gorgeous!!


Hope said...

I wonder what the squeeking is. Is it inhalatory? If it was stenosis, would'nt they have seen it in her bronchoscopies? If she isn't showing signs of distress or visably upset, maybe the squeeking isn't a big worry. I'm praying you get answers and the asnwers are easily managed. Maybe it's just the sound of air moving around the tube in her airway? That can't be easy to pull air around it, so she probably uses a little extra force. I know how much being decanned means to you guys. I hope (and pray) it happens this Summer.

Does anything ever come easy with these kiddos? I think they love keeping us on out toes.

John Gensic said...

I was confused just like Hope. I thought they would have been able to notice that type of airway issue with a scope.

Is she using the smallest size trach right now? I didn't know they capped without having the smallest size possible in.

Well, you're right about the crazy roller coaster that comes with having a special needs kid. Mikan just had a little setback too(for some reason he has needed 02 to keep up his sats while he's been off the vent the last 2 nights). We are praying hard for you family. I know what you mean about wanting Marissa to taste!


Faith said...

I am so sorry ALicia. Have you talked to other moms on the boards about this? Who knows if it just takes some time.

A 3.0 neo is INCREDIBLY small- how you could even expect someone to breathe through that is crazy- but I guess that's the point, huh? How was the caping using the 3.5? Have you asked other moms what's the smallest size their child went down to? Do you think my comment could get anymore annoying? Well I am going to get REALLY annoying here and go place my bets that although this seems like a setback '09 is the year Ms. Marissa is going to be trach free! You better believe it sista!

Jen :)

The VW's said...

I'm sorry that this isn't going as smoothly as you had hoped! It's so difficult getting your hopes up and then it not going as you had planned! It's GUT WRENCHING! It's so hard being a momma to these special kiddos sometimes, especially when we want so much for them!

I'll be praying! Hang in there Momma! This too shall pass! Hopefully very soon, right?! Marissa has gotten through a lot and she will get through this too! HUGS!!!

Jessica mommy to Alex/ RTS said...

I hate that you have to sorry and wonder. I hope you have answers soon and that they are the ones that you want.
Thinking of you.

Nana and PaPa said...

Bear with me and my commical twist......BAD brain!! BAD brain!! NO Drama Queen Thoughts!! BAD brain!!! LOL...Of all people, I, your mother know all tooo well what a drama queen you can be....however, with that said, I also know the struggles you and Jeremy have gone through with Missy Rissy, so to wonder and be concerned just comes with the territory. Although I'm impressed with the questions and comments from your fellow trachey parents! It's always helpful to have another perspective on a situation since you are so close to it and may not be able to see things in a different light. My thanks to those who commented and are so supportive of you and vice versa! This IS a different world you all live in, but as one parent has dubbed it,....it's a NEW kind of Normal! Love you guys...we'll be praying.
Nana & PaPa

Michelle said...

Oh man, there is lots I want to say, but all you need to know is I'm praying for you. I so know where you are coming from. Hang in there sista. I wish I could be there in person for you---we are birds of a feather if that tells you anything!

Did Nutjim fly to CO in the night when I was sleeping?? Wait a minute...I didn't get to sleep...impossible (this is totally a joke..I think Nutjim is here right now..again, you should totally be laughing right this minute :))

Colleen said...

Oh Mama, my heart is breaking for you. Don't give up! I will pray real hard for that day when she will play in that sandbox and enjoy a big giant ice cream cone without any worries! We want so badly for our boy to have the trach removed someday, but I understand too, at the same token, this is what we know...what we are used to as our "normal." Keep us posted! (((hugs)))

Queen Mommy said...

In our experience, we never had to go through downsizing, capping, or a sleep study. Lily had the aortopexy (they also cleared out a BUNCH of scar tissue in her chest wall from the three prior surgeries she'd had in that area), and a bronch a few weeks later showed that her subglottic stenosis resolved on its own. After the T&A and recovery period, the ENT said we'd just pull the trach and see how Lily did. The tracheomalacia wasn't totally resolved, but it was better. Enough better that the ENT told us he'd seen kids with malacia "just as bad" who did just fine without a trach. He was really very easy going about the situation, and Lily did very well following her decannulation.

If Marissa doesn't seems to be "working" harder to breathe, she's not retracting or nasal flaring, and her sats are fine, I guess I wouldn't worry too much about a little noise. Lily still gets wheezy with activity and especially when she's eating (no, she doesn't aspirate, but she's always gotten really juicy-sounding when she eats....it's better now that she's older, but she still does it when she gets sick).

I'll pray things continue going really well! HUGS!

Janay said...

Hey Alicia :0) I'm sorry I'm chimming in so late on this, I just saw your comment on Milo's blog. Milo has tracheomalacia and that causes his breathing to be loud, kind of sounds like air moving when you take in a deep quick breath. Once in a while I have heard a little wheeze but no squeeks. He was downsized to a 3.0 peds Bivona (smallest before decan) in October and we started with the PMV but it took him a long time to get used to that and he never wore it for an entire day. We started with capping January 3 hours a day and just now he is tolerating being capped all day. With the PMV and cap at first when he cried he was silent and struggled a bit but now he can pitch a fit and be alright. Maybe Marissa just needs to get used to the smaller trach before capping? Milo seemes to get winded faster than the normal kiddo, his breathing gets louder and more rapid but sats stay alright, Dr. didn't seem concerned. I was concered though especially since they want to decannulate him soon but Dr said that when the trach comes out he will have that much more room in his trachea to breath with so it should bet better with out the trach. I'm crossing my fingers and believing her :0) Are her wheeze/squeek when she inhales or exhales or both?

Hang in there...

Michelle said...

Oh my sister the drama queen! I have no room to talk here because I come from the same mother as you do and can be, at times, a drama queen myself.
Just give it time. Remeber when it took a while for her to tolerate the PMV? I remember you would put it close to her trach and she would gag and it seemed she couldn't do it. But as time whent on, she used it more and more. I also seem to remember she was able to tolerate the PMV for a few mintues and then it was nothing at all and then she was back to tolerating.

Time is what she may need. Just be patient and everything will work out the way it needs to.

Love you all,
Auntie Chelle