Sean Decannulated on 9/11/10

[AngieG076]

Hi All,
I don't really post much, but I wanted to share what has been going on with Sean, as things are bumpy, but on their way to him staying decanned. )

His first attempt of Dr. Jacobs taking his trach out, didn't go so well. He did fine in the hospital, with out running around too much and being his happy self. But, within 24 hours of being home.. back in NJ, and him having his first crying fit, he went into respitory distress. Pulse Ox reading low 80s.. airway collapsed. He was stabilized at local hospital, and then airlifted to PA to get retrached at CHOP.

After that. We were told that his trachea was still very floppy, bigger, but floppy. And that he needed a double stage LTP to hold his trachea opened and open up his paralysed vocal cords a bit.

Almost two months after his LTP, on 9/11.. he was decannulated at CHOP, and did really well. We tested the laughing, crying, and running around as much as possible.. as I was terrified of his airway having issues once again.

He still has bilateral vocal cord paralysis, so he is squeaky and noisey when he over does the running, crying and laughing.. but, his sats stay good. Dr. Jacobs said that all the "noise" is his vocal cords trying to move under over-exhertion, and that will improve as the muscles get stronger, he learns how to manage it all, and his airway gets bigger.

Not even a week after decan, he got his first cold from his twin sister.. and had a severe croup episode in the middle of the night. I got O2 on him, as he is regularly on nothing, and got his sats back up, but the loud "seal noise" and retracting, wouldn't stop. I tried cold air, steamy bathroom, .. and got no where. So we went to the ER and got 2 steroids to calm inflamation. It helped, but he was still working a bit to breathe through the night, and Dr. Jacobs sent an ambulance to bring him into CHOP, and get him monitored for 24 hours. He did well there, and once he was okayed and we cleared up all our emergency plan details, we were sent back home.

We are now all stabilized again, and had our first full week of pre-k classes this past week. I am so so scared of him getting sick again, and I know it is impossible to avoid.

Just wondering if anyone out there has had croup issues similar to this once decannulated, and how it was handled. We were given a back up perscription of oral prednisone, to be used in an emergency. Once we use it doc said to call the ENT office to follow up. It's just scary, and I'm not sure how safe this is to take?

You are all such a caring group of people.. with so much more knowledge than anyone out there, that I was hoping that someone could help me out with all of this.

It's been a month since decann, and instead of being happy and excited for Sean.. I am completely terrified. (

Thanks everyone!!!
(( HUGS ))

Angela G
Mom to Franternal Twins, Sean and Caitlin.. almost 4 years old now!
(Sean - ligated PDA, small VSD, Bilateral Vocal Cord Paralysis & Tracheamalacia / Tracheal Stenosis .. corrected with double staged LTP)