Hey we are new here!

againes304 · #1 02-08-2009, 06:34 PM

Hello everyone, our son jarriell was born on October 27, 2008 11 weeks early. At that time he was put on a ventillator. He came off of the vent when he extebated himself on Novenber 14. From that point he went backwards and forwards on C-pap and high flow nasal canula. On January 29 he was put back on the ventillator. He is perfectly healthy besides his lungs, and he has Severe Chronic lung disease, he has been on steroids and still currently is, on a number of meds including diuretics, but nothing has seemed to help at all. The next step is a tracheostomy. It is scheduled for Feb 9 we are so nervous. We know this was a better way for him to be able to eat, and plus he has extebated himself a few times and it has not been pretty at all. If anyone has been through a similar situation please let us know. We want to know everything that we could possibly know about a trach. all info is appreciated we are just so nervous. Thank you all so much!

Amy & Jarriell

kirafaesmom · #2 02-08-2009, 06:54 PM

I'm so sorry you are facing this. The only experience we have in common is being so nervous. Our 5 year old daughter just got her trach 4 days ago. It was such a hard decision, and frankly, I was scared to death that I wouldn't be able to handle her care. We have now done everything except the trach change (she's not ready for her first one till Tuesday)....and it's not nearly as bad I thought it would be. A HUGE part of why we are so comfortable with her trach is this group. They've been amazing at helping adjust. In Kira's case...it was the best thing we could have ever done. To be honest, she looks better than she has in well over a year. I wish we had done it sooner. Not only are her sats better, but she actually feels better....even with just having gone through surgery 4 days ago. I know you are scared, but I'm praying that you will find the peace and courage to make whatever decision is best for your son. Welcome to an awesome group of parents...they've been a God send to our family.

JWorthington · #3 02-09-2009, 03:43 AM

Hello and welcome. good luck with the surgery today

Julie x

davisgld2 · #4 02-09-2009, 07:04 AM

Hi and welcome. My daughter was trached in June of 08 and to say that we were nervous is an understatement. Most of the anxiety comes from the "unkown" of a trach but I must tell you it really isn't as bad as we thought it would be. My daughter blossomed after being trached (she was intubated on and off from April 21until her trach on 6/23 and she was abosultely miserable. She was intubated for surgery on 4/21 and she was not able to be successfully extubated after that). She is the happiest little girl now and looking back, we would not have done anything differently. My only advice is to jump into the trach care as soon as you can. I found that becoming involved earlier helped ease my anxiety of the "unkown." Good luck and take care.

My little figther · #5 02-09-2009, 12:21 PM

Welcome to the boards - even though this was not the club you would have want to be part of. Nervous this word is not even describing how we felt on October 16, 2007 day of Cedric's surgery. It is completely normal. It is scary but when it is done you can see how better they breath and how much more comfortable they are. It is hard to see and to swallow and you will need a little bit of time to adjust, but everything will be OK. I hope the surgery went well today.

Michelle

alizesmom · #6 02-09-2009, 01:48 PM

Hi and welcome. I'm praying for all to go well today then you can work to get your guy home. Karen

kadiera · #7 02-09-2009, 05:28 PM

We're in nearly the same boat, just a few months ahead.

All in all, I tell people that the trach was the best thing we ever did. Alexander was miserable on cpap, and is now very much the normal kid we were pretty sure he was, other than the breathing thing.

Alex was born in June, 13 weeks early. He was on the vent 7.5 weeks, then on cpap a long while, then went about a month on cannula...and then back on cpap. He had hist trach surgery mid-November at 5 months actual/2 months adjusted, along with a g-tube. He's slowly working his way up to a couple bottles a day by mouth, but we all think he'll do better with real food

TommysMommy · #8 02-12-2009, 10:08 PM

How did it go? I'm in KY too if you want to contact me.

againes304 · #9 02-17-2009, 08:35 PM

I have just now read all of your messages, I guess i did not where to look for them! Jarriell Jr is doing well he was trached on Feb 9. He did really well. That night he had some issues where his trach got plugged and they could not find any breath sounds. They ended up pulling the trach and trying to reinsert which did not work they callled it a false tracK. So he went in for his second surgery Feb10 and so far he has done wonderful for the most part. he actually started back PO feeds today. I am a little concerned because every once in a while his sats will drop temp will go up to about 100-102 and heart rate will excel into the 200's and he has a really rough time, but comes right through it. He has been doing this off and on for about a month, before the trach, and has had a couple of spells since the trach. has anyone ever had any similar experiences. We have taken a couple of trach classes. his trach was changed yesterday he did really well. I can't wait till we can change the trach I am trying to be involved in his care as much as possible. i want to learn more. I cannot wait to get my little guy home which I know will take some time! he is still on a vent, pretty low settings, Gasses have improved so much! I am just praying for more great days to come!