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)

[Topher's Mom]

I just wanted to say congratulations on Sean's decannulation!! Sorry I'm no help on the other as my son was not trached for airway issues. I will be praying for you all though.

Karol

[rosi's mom]

I don't have specific answers for you, but I do know that my brother used to get croup all the time and need steroids and he never had airway issues to start with.
I understand your fear a bit. Rosi has had her trach out for 2 months now and we've been through 2 colds. I can't move her out of our room because I need to be able to hear her breathing. I still check on her all the time through the night. I guess it will get easier, but it's seeming to take a long time for me to feel like she's ok.

[Ainsley's Mom]

Congrats on the decan though I'm sorry to hear it hasn't been 100% smooth. I hope he stays well and doesn't get croup again.

[AngieG076]

thanks everyone! this still feels all new to me. almost like it hasn't happened for real. i check on him all the time. especially at night. i guess with time i will get more comfortable with everything. i just cleaned up their bedroom a bit today. but, i still run the big gray box humidifier at night, as i haven't figured out what to use as a replacement for the "noise". any suggestions? i did clear up most of the trach stuff and put it in a box in the closest. phew. first step. lol. i still need to do his play room / trach room that is downstair. that is 10x more filled, as we used that room for all his trach care. with baby steps i'll ge there. i've heard from other croup stories that they didn't have airway issues either. so i guess it's just sean's luck that he got croup a week after decan. i think he is always trying to test mom's "super strength"??