Special Needs
aiden update
We are back in our room. Aiden is waking up and eating. 
They did find that he has a laryngeal cleft. That is why he is aspirating etc. For now we will thicken his milk. We will follow-up with ENT at MUSC in 4-6 weeks. At that point we will schedule a surgery to correct it. The docs still want to follow-up with a head MRI to rule out any neurological problems. That will hopefully be done tomorrow. He will have to be sedated and intubated for that one. Then hopefully we will be home for Halloween!!!
They did find that he has a laryngeal cleft. That is why he is aspirating etc. For now we will thicken his milk. We will follow-up with ENT at MUSC in 4-6 weeks. At that point we will schedule a surgery to correct it. The docs still want to follow-up with a head MRI to rule out any neurological problems. That will hopefully be done tomorrow. He will have to be sedated and intubated for that one. Then hopefully we will be home for Halloween!!!
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Re: aiden update
Thanks for the update!
Drake had a laryngeal cleft, too. Whatever you do, DO NOT start researching online. As with anything else there are too many stories that you do not want to see. Just listen to the doctors and take it one step at a time. Drake's surgery went very well and we have had absolutely zero complications from it!!
Give that little guy a big hug from all of us! He's a trooper!
Sounds like Aiden is in good hands, now that they have determined the issue for him aspirating. Good luck with the MRI and hang in there.
At what age did Drake have his surgery? The doctor said that most of the time they don't find out the child has it until they are between 6mo-1year. We are lucky we found it early. We go back in 4-6 weeks to get a checkup and schedule surgery. So, he will be between 5-6 months of age when we do the surgery. The doctor wants to give him 4-6 weeks so that he can strengthen his swallow- supposed to produce better outcomes.
Thanks everyone! I am happy that I was persistent and that we are getting answers! Can't wait until we are all home!!
Max 4-08-08 and Michael 2-03-91 (19 years olds)
We found out about Drake's cleft when he was about 6 weeks old. He had been intubated since birth and he couldn't blow out his co2 hard enough to be extubated so they went looking for the problem. He had his surgery when he was almost 2 months old (he was born 7/6/07 and the surgery was 8/28/07). We were also told that they usually can't find this problem until later but we had an ENT that was determined to find out why he was having trouble breathing. We were also very lucky!
I am happy that you are getting answers and will be thinking about you and your little guy! Keep us updated!