"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

Tuesday, June 16, 2009

Some Potential Answers

... regarding this previous post.

I was in e-mail contact with Marissa's ENT last week.  I raised my concerns to her and sent a video to document part of what Jeremy and I are noticing with Marissa's breathing.  I am going to copy and paste my e-mail to Dr. P and her response back to me to let you all in on what we are concerned about.

Dr. P, 


I would like to share with you some concerns I have regarding my daughter's, Marissa, airway.


We are noticing a loud squeak when Marissa is inhaling when she is agitated (laying on her back, not capped or anything else on her trach)  She gets really agitated when it is bedtime and she is told to lay down (like any other toddler).  This is the scenario the video captures.  We started noticing this around the beginning of the year and just chalked it up to her swollen tonsils.  Even though logic would tell us that her breath would go the path of least resistance and if she was having trouble breathing past the trach tube and past her swollen tonsils she would just breathe in and out of her trach.  We had the T & A done and while she was recovering, for about the first month, we did not hear the squeak.  Then we started hearing it a little bit.  And then we downsized her trach and we started hearing it a little more.  I do think she has handled the downsize well and I don't think that is causing the issue, simply because we had been noticing this before the downsize. 


In the past, we were in the habit of not turning the pulse-ox on until after she fell asleep because, when she would kick her legs, it would stop picking up and would false alarm.  We recently decided to turn it on while she was agitated and squeaking and her sats  go down to 88, 87, 86, as you can see in the video.  As soon as she calms down (which she does realatively quickly) her sats go right back up to 94 - 97.  We can tell the pulse-ox machine is getting a pretty good signal.  The squeak sounds EXACTLY like the stridor she had in the NICU before she got the trach.  We feel her tongue is possibly still occluding her airway in these instances.  


Also, with the cap on her trach, she still works to breathe when she is playing vigorously.  She wheezes, for lack of a better word.  It mainly sounds like she has to work harder to inhale air past the trach tube itself.  She also has the same squeak when she cries with the cap on.  Most of the time, we will take the cap off to let her cry because she just can't get enough air.  I have some friends whose kids have trachs and some of them who are capping say that their kids do work to breathe a little more, but there is no squeak.  So, my other question is, could her trachea be collapsing somewhere and it has been missed by the bronchoscopies because it only happens when she is alert and agitated?  Or, is this just a symptom of being capped and still having to breathe around the tube in her throat?  Is there a scope that can be done in your office, without anesthesia, that could get a better picture of what is going on when this happens?  


She has been downsized for three weeks and she wears the cap all of her waking hours, just like she did with the PMV.  She does well capped, except like I said, when she cries.  We have an appointment to see you on July 7.  Please let me know your thoughts on this and if you would like to see Marissa sooner.


Thank you for your time.


Here is her response back to me:


I’m not sure I can completely explain her squeak.  It doesn’t sound completely consistent with upper airway (i.e. her base of tongue); at least over the video.  If the squeak happens while she is awake, upright, and capped that also would tend to make me think it is not base of tongue because this collapse should be improved with positioning and level of alertness.  It certainly could still be a component of tracheomalacia.  The downside of my bronchoscope is it tends to give a more static picture secondary to the fact of the rigid tubing and general anesthestic required.  The bronchoscope tends to “stent” the airway so I often don’t see a completely dynamic picture of collapse.  The flexible bronchoscope, however, does give this type of picture.  This is generally done by peds pulmonary (i.e. Dr. M) because his scopes are equipped to do this.  My flexible scopes in the clinic (i.e. the ones we use to eval the larynx) are shorter and do not have the capacity for suctioning.  Usually, when pulmonary does a flexible scope the patient will be under light sedation with anesthesia present.  Because you are passing the scope through the vocal folds there is concern for possible laryngospasm.  They also would need to perform this without her trach in to get a full dynamic picture (the trach also functions as a stent).   I could take a look through her stoma (without the trach in place) with my scope, however, if we have a lot of secretions, I may not get a great picture (but we can certainly try). 

When you come in to see me we could give the flexible scope through the stoma a shot.  I also would like to look (if she will tolerate it) from above (i.e. with the scope passed through her nasal cavity) to get a dynamic picture of her larynx and base of tongue while awake, agitated, and capped.

So there you have it.  There could be a possibility that tracheomalacia is still present.  If this is the case, Marissa will obviously not be decannulated soon.  More than that, I feel an overwhelming sense of disappointment that her issues may not be resolved like we thought they were.  

Still, I am trying to not put the proverbial cart before the horse.  We still have to get her scoped by Dr. P and most likely Dr. M.  We still have no true answers to these issues at this point.  But, something is not right, that we do know.  

I will obviously be updating this thread as soon as we get some answers from our July 7th appointment.  

(I'd also like to say that Blogger really pisses me off sometimes with the way it formats things on it's own and then won't take my corrections.  It seems it happens most when cutting a pasting from another source, which I should be able to do with no problem!  Being somewhat OCD about how my posts look, this really gets under my skin!! )

For now, I'd like to end this post on a positive note.  Please enjoy some pictures of the light of my life, Miss Rissa Roo:


Anonymous said...

I really dont have a whole lot of words coming to mind concerning the medical aspect of this post but I wanted to let you know that I am thinking of you. I am sorry that you have to endure the uncertainity of Marissa's future when it comes to the being decannulated or not. Being a mother I know how hard it is to not be able to fix every problem or discomfort. I wish Marissa's discomfort was something more like teething which is my biggest problem right now. Its not fair. I am sure its very tough but stay strong dont lose faith. I pray that you leave the Doctors office on July 7th at least with an answer and a plan to fix his issue.

Michelle said...

She is beauty-mous!

The VW's said...

Marissa is getting cuter every day! I want to SQUEEZE her!!! (She probably wouldn't appreciate this though!)

I'll be praying that you will get your answers soon and that there is a fairly easy fix too! Sorry that you are having to worry about this! Hang in there! HUGS!

Hope said...

She's so beautiful, Alicia.
As for the scope in office, good luck! It was an ordeal with Ava and showed she's having mucus plug issues (ewww, right?). They can use spray to numb her nasal passages, though! I'm praying it's not tracheomalacia. ((Hugs))

Colleen said...

She is such a little sunshine!

I'm sorry to hear about the possible tracheolmalacia. I will pray this is not the case, but also that you get some much needed answers to the squeaky sound. There's nothing like sending a letter to get the doctor's attention--I have found this to be true in the past w/ Isaac.

John and Jenna Gensic said...

Sorry to hear about this bump in the road. I hope you get some answers soon. Does the doc thinks she may need a flexible scope with anesthesia to get an accurate picture of what's going on? All of Mikan's have been done while he was under. Anyway, I hope whatever it is can be resolved quickly for you guys. By the way, is Marissa's heart rate always that low? That looks pretty good for an angry heart rate. Mikan's is always in the 140s, 150s when he's upset.


Nana and PaPa said...

I know you're facing again some uncertain time lines and how anxious you are to resolve this issue. We also will be praying for some answers...simple answers. Love you guys
Nana & PaPa

Jessica mommy to Alex/ RTS said...

I hate dissapointments. Im sorry.
I do love that you can talk to your doctor through email, that is what an awesome doctor is all about!!!
Marissa is sweet trach and all!

Queen Mommy said...

I don't know what the answers are, but I do know that some kids tolerate decannulation while still having some degree of tracheomalacia (Lily did...the ENT's exact words were: "I've seen kids with malacia just as bad that do just fine without a trach, so let's just take it out and see how she does."). It's also possible that Marissa would be a candidate for an LTR or maybe an aortopexy. No matter what the answers are, we'll keep praying. Even though we try not to, it's so hard NOT to get our hopes up when it comes to D-Day! HUGS!

DevonLeah said...

Sometimes you can just get sooo discouraged in this journey, huh? Praying for you today and for a miracle in your baby girl's life.

(Enjoying all the pictures and I have to say the poking daddy in the eye one made me laugh!!)

take care!!

Dana said...

Don't give up on Decan. yet. She may surprise us all.

SOund like you have a good doctor who is looking out for her.

Blogger makes me angry as well. Just when you think you have you post formatted right they change it all. I have NEVER been able to cut and paste from another source into Blogger.