Well today Mighty Max and I headed to Seattle for a swallow study. I was really looking forward to it and expecting fairly good results. He has made such wonderful progress in the feeding department, and I wanted to know exactly what was safe for his current swallowing ability.
I even joked with the therapist beforehand that I had a report written out in my head on what the results would be. Well unfortunately, I had to rip up that report afterwards.
When it comes to thinner liquids, he silent aspirates. What does that mean? That means his swallow is still uncoordinated, he isn't protecting his airway, and the liquids are going into his lungs. Not a good thing. Not only can that cause pneumonia but it also causes long term lung damage. Max definitely doesn't need either.
As far as pureed foods, he is doing fairly well. However, the therapist was concerned about anything too hard because his chewing is definitely not what it should be. But my gosh, he is loving lil' cookies and crackers these days! He even signed for them on the way to Children's...over and over and over again!
Because of his weak chew and uncoordinated swallow, he is at high risk for choking.
Sooooo....not what I expected, but it's better to know his true ability and not risk his health. I talked with his pulmonary team about it today and we are talking again next week about the course of action. One suggestion is to add in more feeding therapy. I know we need to, but I seriously don't know when we could fit it into his schedule! We are also looking into adding another speech therapist (with a different technique) because of his slow verbal progress. The two issues are somewhat related in that he has low muscle tone and lack of sensation in his mouth. We'll see.
Oh and yes, I got the infamous "angry finger" (times 100!!!) several times during the study. He was not happy about all the barium tests and really wanted to get back to his walker!
9 comments:
Amy,
I am sure that the news was a disappointment but I know he will get there - after all, it is Mighty Max we are discussing.:-)
Certainly he will sleep well tonight. His "angry finger" must be exhausted.
Love,
Mary
Eva is having a swallow study in a few weeks.
Sorry about the news, it stinks when we think they are doing so well but here we are not doing well at all.
Hugs,
Crystal and Eva
Amy,I'm sorry to hear about Max's swallowing. I know how much you have enjoyed your "dinner dates". I'm sure Max's hard work and your persistance will prevail!
That's a bummer. But on the bright side, half the battle to oral feedings is getting kids to like food. Sounds like Max is a little cookie monster already and hopefully with his new therapy he'll get more coordinated with his swallowing and be eating again in no time. Oh, and I love the image of Max and his angry finger. He is just so funny and smart!
Shelly and Luke
Poor li'l guy...I know those barium studies are awful! Had to do them myself several times when I had a paralyzed vocal chord for seven months. I was waving my angry finger at the doctors then, too. It's somehow not as cute coming from a grown woman ;-)
Hang in there you two! You're making incredible progress. Don't let a bad report get you down.
Sorry to hear the news, Amy. I have no doubt that he will overcome this.
Hugs to you Max,
Shannon
Mighty Max will do this in his own time. Look what he has done so far, he's checking things off his list. I'm sure the "angry finger" will stay.
Love & Prayers,
Carolyn in WV
So sorry to hear the news wasn't what you were hoping. I still think Max is doing amazing things when it comes to eating and communication. I really do think Max will get there in time.
XOXO-
Amy
I'm sorry about the news. Jack has his feeding evaluation on Thursday. We've been letting him explore food because he is so darn interested. I hope that we will get the ok to start some feeding but I fear we will recieve the same news as Max. I hope as he grows his swallow will develop. THese little guys go through so much. It isn't fair that they just can't enjoy a good chocolate milkshake!
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