Wednesday, July 30, 2008

So long, trach!

Aidan's visit with the ENT went well today. We've scheduled another bronchoscopy to be followed by decannulating (removing the trach), if all goes well. That will be in 3 weeks on August 20th. I'm excited about this, but then again, I'm scared. We'll most likely lose our private duty nursing as a result of the trach being removed, despite the fact that nothing else about Aidan's condition has changed. He's still on a ton of medication and he still has seizures, and he's still got a G-tube. It doesn't make any sense to me at all.

Aidan started back with the hyperbaric treatments this evening after taking a week off because of the ear infection. The ENT looked at his ear today and said it looked great. We've got to work in some of the appointments we've missed and hopefully get him up to where he can tolerate more pressure.

My appointment on Tuesday went okay. I met with the surgeon and they scheduled me for an abdominal/pelvic CT scan for tomorrow morning. After that I'll go back for a follow-up with him and then probably see a plastic surgeon to see about getting the extra skin removed when they repair the hernia. I'll know more once they get the CT results back.

It's been pretty busy the past few days. I'm hoping we get some more people registered for the golf tournament since we have until the 4th to get the registration forms in. We really appreciate everyone's support and all of the fundraising that people have done. We recieved $1200 from the Sons of Confederates for the Poker Run that they had last month. We had some pictures made with the guys last night, so I'll post them once they are emailed to me.

Thank you all for your continued prayers. Without them, I'm not sure where we'd be. I'll leave with another bit of info- Aidan looked at me this afternoon and grinned. I was so surprised that I had to make sure it wasn't a seizure first, but it wasn't. My little boy is coming out of this... I don't know how long it's going to take, but I'm going to fight for him as long as I have to.



Anonymous said...

That's awesome news Erin! I'm so happy for you guys.

Anonymous said...

Erin, your heart must have skipped a beat when he actually smiled at you! Mine just about did when I read about it. Just want you to know that not a day goes by that I don't lift your family to the Lord in prayer and ask him to give that child a miraculous recovery and restore him completely.
So glad to hear that the trach will come out. Does that mean that they may eventually remove the feeding tube also?
Praying that your hernia will be a fairly simple repair (if there is such a thing) and you'll have a speedy recovery. Hope you have many, many more reports of smiles, etc to report!

Anonymous said...

Wow Aidan is such a miracle! Praise the Lord! I bet he will feel so much better without the trach. I am so happy he looked at you and smiled he must be recognizing what he sees.
Will be praying for you all.

Luke's Mom said...

What great news about Aidan's trache coming out so soon! You are a blessed momma. Don't be so sure you will lose all your nursing hours right away, we continued to have a nurse for quite a few months after Luke got his trache out. As long as the whole in the neck stays open which can be for a long time, some people get to keep their nurse. You might also qualify for a an assistant under your Health Dept. not sure what they call it where you live here in WA it's called DDD.

You all stay in my prayers often,

Anonymous said...

That last paragraph just gave me goose bumps. Such a wonderful thing to hear. Thank you so much for that good news. You must've been on cloud nine! He's a little fighter.

Stay strong and take care of yourself!

Anonymous said...

Reading your words about his grinning and how he's coming out of this made me cry. I pray for him all of the time and this update has seriously made my day. God is good!

Anonymous said...

Congrats on losing the trach, little Aidan!! What a tough guy you are!! Erin, thanks for the update... I know you haven't a clue who I am but I found you through a post on fertility friend and follow your sweet Aidan's story regularly now. Praying for you all daily.