View Full Version : update on Kadyn--

04-02-2009, 12:56 AM
I will try to keep this short- of course the updates in full are on her cb site www.caringbridge.com/visit/kadyncerezo if you want ot know more details.

So she had dbl stage LTP on Feb 23- and they found the blind pouch (mystery pouch) and so they kept us in the hosp for the 2 wks- no trach chg suring that time and took her back for scope at the 2 wk mark. Blind pouch was gone- but her airway was still very tight even after the grafts. We got dsch. and came back for follow up scopes several weeks in a row. After the 1st scope, they decided to have us come back for a series of dilations for about 4 Mondays in a row.

Her airhole was difficult to find or see- and it was only a 2.0 mm. They dilated to a 6.0mm- but it clamped back down fast. The following wk it was already back to a 2.0 so they had us go this past Monday and they put in a long term stent. the stent is 6.0 and they hope to have the trachea heal at that size.

My dh is very reluctant about this- because the Drs told us she is likely to have alot of granulation at the top and bottom of the stent after several wks. And that the granulation can set up a foundation for more scar tissue to grab onto. So we could end up with more stenosis at new places...

We go back in 2 months to take out the stent and get new look inside. Also at the 2nd scope they told us that her grafts were not pink from mucosa making them permanent- and they were concerned. Thsi most recent scope they said there was too much scar tissue over and around the grafts and they couldn't get a clear look. So far the grafts have not slipped down and out of place. So I guess that is good news.

Sorry so long-- this has definitely been a long and crazy past 6 wks~~
And unfortunately We (or I) have started thinking through the possibility of trach forever- and I know that God has been with my family on this entire journey- and my daughter is a huge blessing and is a big testimony to true miracles! She will have a very full life whether she gets this trach out or not. And we have not given up yet on trying to get it out...

Ainsley's Mom
04-02-2009, 03:09 AM
Wow! You have been through the ringer. I'm sorry things didn't go as smoothly as they could have. It's good to hear you're keeping a positive outlook and I hope that things will improve so you can move on to a successful second stage. :hug:

04-02-2009, 03:51 AM
Oh how your story sounds so familiar to us. We can totally relate!

Feel free to contact us if you ever want or need to talk.


04-02-2009, 06:44 AM
My, your family have really been through it. You are amazing to have such a positive attitude. Hope things improve soon:hug:


04-02-2009, 08:46 AM
Hi Charity! You all will be in our thoughts and prayers!!:hug: