This is going to be brief because the last few days have been exhausting and this mama needs some sleep.
Anyway, we don't know everything yet, but we do know the following:
Hallie's left vocal cord is paralyzed, most likely due to iatrogenic causes, namely the ligation of her PDA. This seems like a small price to pay for life, but we cannot help but wonder what her voice will sound like. More importantly, i need to follow up with ENT to confirm that the paralysis is in the midline position.
Additionally, Hallie has laryngomalacia. This is the most common upper-airway issue that babies have and most often it self resolves by 18 months-2 years. This floppiness in her larynx may explain her speech delays and some of her eating issues. The is a very strong correlation between laryngomalacia and GERD.
We did, indeed, have a Modified Barium Swallow Study on Friday and, not terribly surprisingly, it showed aspiration on thin liquids. There was some pooling on thickened liquids (we have been using Simply Thick to thicken her feeds for the past month or so and this has seemed successful to me), but no aspiration. There may have been some penetration into the airway but Hallie managed to push it out. Purees were fine across the board.
Where do we go from here? Unclear to me and I really need Hallie's ped. to put it all together for me. We are still awaiting results to see whether the macrophages in her bronchial lavage fluids are lipid-laden, which would not be a good thing since that would suggest a lot of aspiration. Given how well Hallie is growing, doing developmentally, and the like, we'd like to resist any drastic surgical intervention. My hope is that the GERD and floppy airway will improve and that we can just start acting/being like parents, and not parents of micropreemies.
I don't mean to kvetch; in the larger scheme of things, Hallie is doing really well. I just wish that we could make her more comfrotable and get her over this hurdle.
7 comments:
Hi Abby,
As you might have read, Serena has a very similar disgnosis to Hallie. She too aspirated in her barrium swallow, only she did on every consistency. But because of her growth and development, all we do is thicken her formula with rice cereal and she has not been choking on the thickened formula as she was previous. Serena also has a paralyzed left vocal chord and is not as verbal as Edwin by any means. But she does try. She also has sub glottic stenosis and tracheal malasia, the first was described to me as mild narrowing of her airway, and the second floppiness of the tracheal area of her airway.
I didn't get a call back about the biopsy to check for the aspiration or reflux's effects on her airway, hopefully that means everything was okay...I plan to call tomorrow to see what the pulmonologist heard, as our ENT is in constant communication with our pulmonologist.
Thankfully, Hallie is off O2 successfully, Serena's airway issues account for her inability to sleep without some flow from the O2. She also sleeps with her head back to keep open her airway.
I'm glad you found some answers, and hopefully in time, with growth, these issues will resolve themselves.
Good luck! She is doing amazingly well!
Hope she continues her amazing progress away from that micropreemie status. I know this must be so hard to live through all these ups and downs and ins and outs. Thinking of you.
Sending prayers your way. I hope the pedi can put it all in perspective for you.
Sending hugs to Hallie!
Hey girls, I have 2 big boxes of simply thick for you. Shoot over to my blog and send me an email with your address if you are interested!
E
one of these days i will make a video of Dan the Man and post it for you and the others. Daniel's left vocal cord is paralyzed and he also had a floppy airway and larynx. we have come so far. he has a soft voice compared to his peers although he seems to have no problem projecting across the playground or at home when he wants to....when HE wants to. he also made amazing progress with speech therapy so much so that one of the chief "concerns" last year when placing him in the appropriate level kindergarten program was that he knew too many words for the program that he is currently in...then i learned a lot about the importance of a therapy team liking you and your kid A LOT as they fought hard for him inspite of his wordiness and he got in to the kindergarten class that is the best fit for him.
whoo-hoo.
good luck with this new bit of news .
i will work on getting my little man to sing a song to share with y'all.
I hope your ped can help put things into perspective for you about Hallie's issues! It is so frustrating not being able to do anything for them or know where to go next...I get lost so much it is crazy!
I'm sorry the tests didn't go as planned. Hallie is following in Eli's footsteps unfortunately. We just don't have a reason for E's aspiration. Ours has drastically improved from needing pudding consistancy to now only needing between nectar and honey. Hopefully Hallie will be able to wean down the Simply Thick consistancy as well. Don't you just hate that Simply Thick can't be bought at the pharmacy or in a store? GRRRR.....it is so expensive!
I hope the bronch and lung wash go well. Eli goes to the pulmo to schedule his on the 28th. Big ((((HUGS))))) to you both for going through all of this. I know how frustrating it all can be. It is amazing how complicated simple things like swallowing can get after you have a micropreemie. Let me know if you have any questions or just need to vent to someone who has been there for two years (and is still there).
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