The study itself was really easy. I have posted a video of the view that I saw since Daddy was in there with his little girl. It's interesting to watch, but I can't tell what I'm looking at. I believe what we were told is that she was aspirating on the thin liquid and only penetrating on the nectar thick liquid. Penetrating is when it isn't going into the airway, but goes over the opening to the airway. When there is penetration there is a high chance that at some point some food goes down into the airway. We should get the report next week so hopefully that will make it a little more clear.
We were given some SimplyThick "honey" to add to all her formula and so the price of her formula just went from gold to platinum! We haven't done any research on this stuff yet, but hope to soon. It's supposed to make the formula into a consistency similar to that of honey. The thought is that the thicker the liquid, the harder it is to aspirate because it stays together better. Our main concern is that it contains citric acid and since she isn't allowed food with that, is this going to be an issue? We are going to try it for a few days and see. Hopefully it won't be an issue. The other issue that it seems we are going to run into is that it continues to thicken as it sits. Since we make formula up in batches for both us and for daycare, that is likely to be an issue. We tried it tonight and she can drink it from the straw okay, but the nipple that we have for the bottle is really too small. She was able to get it, but it took a lot of work so we will have to try something else.
If anyone has experience with thickeners I would love to hear about it.
We see the GI on Thursday so I'm glad we got this study completed before that.
Oh, and for those that asked why I suspected aspiration was occurring:
- coughing as she drinks
- gurgling/wet sounds after drinking
- a gut feeling for months
Oh, and we thought she might be finally over that Hand, Foot & Mouth Disease, but tonight there are fresh bumps on her bum so I'm afraid we aren't through with it yet after all.
That's about all the bad news I can handle in one day so I'm heading for bed. Before I go, here are some cute pictures from the day...
Waiting to be called for the study:
Hanging out in the chair before the study began:
Sweet Pea being a goof while Daddy looks like one in his lead outfit:
My view of the study:
It's so tough when our gut feelings contradict the doctor! Good for you for going ahead with the swallow study - so great you figured out what was going on! Best of luck with the thickener!
ReplyDeleteshe is just so stinkin' cute...Glad that is over with. My girls and I had HFD (My mom called it hoof and mouth,:)when they were little it was miserable so I understand the frustration with that...it sure doesnt feel good, poor little love.
ReplyDeleteI'm sorry to hear that Sweet Pea is aspirating, but it's better to know for sure. Our instincts as Moms are usually spot on, aren't they!
ReplyDeleteOh I'm so sorry you didn't get better news! What a pain to have to deal with this! Hopefully it's only short term and something she will just grow out of! Glad the study went okay. The video was facinating! I couldn't tell what the heck was going on. They kept saying she was aspirating and it just looked like swallowing to me! That's why I'm not a swallow study tech! ;) Good luck with everything and hopefully Thursday's appointment will clarify things for you.
ReplyDeleteGlad you got some results, sorry it wasn't great news on the study or the hand, foot and mouth.
ReplyDeleteHopefully she is sucking up some thicks shakes in not time and that aspiration is a thing of the past as well as her rash!
Glad that you finally got the diagnosis. There is no substitute for a Mommy's intuition.... Hope that Sweet Pea is feeling better soon.
ReplyDeleteWish she wasn't aspirating, but it's good that you guys know she's really doing it now. The video is very interesting. Love the lead outfit :)
ReplyDeleteI have a bad feeling Claire is aspirating too. We had been feeding her on her side but switched to a semi upright back feeding and she's been coughing like crazy when she drinks. I guess it's back to her side until I can get a swallow study done...
ReplyDeleteHave you talked to a speech-pathologist about her aspiration? I assume you probably have since you had the MBS done, but if not s/he might have some helpful tips for you. I am currently in graduate school for speech-pathology and I wish you the best of luck! I will ask around about the thicken liquids situation and see if I find out any helpful tips!
ReplyDeleteOh! I am new at blogging and just realized that this was posted in June 2010! I'm hope you had your questions answered!
ReplyDelete