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Myself
04-13-2009, 05:44 AM
Hello eveyrone, and Oh how I have missed you all!!

Catch-up, Gage had his final sting procedure and his bronchoscopy on Thursday April 9th. I will backtrack a little here now.

When Gage had his last bronch our Doctor simply told us, "Although nothing is guaranteed in the medical profession he was quite confident that Gage was having his trach removed this year. Let me tell you I walked out of that room so sure about this news, as this Doctor (whom has been the only Doctor whom has bronched Gage and also the man that gave him his trach) had never shined a light down to me before. Then Gage had his respiratory clinic at the hospital, the main lady that helps set up the bronchs etc, then tells me that Gage is one of the few that is on the possible decannulation lists. The office then phones me the folllowing week to tell me what they possibly are going to do for Gage's trach removal. To put it mildly, I was 99.9 percent positive it was coming out!!

Back to April 9th, We arrive at the hospital at 8am and we check in at admittting then arrive up to day surgery. We get settled in and are in a room with another family whom have two children who are going in for surgery by the same doctor that is going to be doing Gage's sting procedure after his bronch. So a new doctor, whom I had never met before, who is going to be doing Gage's bronch, explains the procedure, then they whisk Gage away.

One hour later as I sit in the waiting room this doctor comes in to break the news. Gage's airway is still collapsing and decannulation is denied, we now have to wait another year. Instantly the tears roll down, I get hysterical as I am in total confusion. I then explain to the new doctor what our regular doctor told us last year, and about the phone calls we received. He tells me they both reviewed the bronch and is a joint consensus. I felt as though I was kicked in the stomach. The next doctor comes in to tell me about Gage's sting. Guess what, not listening at this point.

Speed up, I arrive home and show my husband Gage's bronch at 3pm. He then points out to me the name at the top of the bronch it says Jonathon, but has the correct last name, then I look at the patient number. It doesn't match Gage's hospital bracelet number. So to get to how Hope truly never dies I foolishly think "Crap, we have the wrong bronch, this is not Gage's bronch, this belongs to someone else." I then call day surgery back and speak to our nurse. She looks into it, calls me back, and then proceeds to tell me that it is Gage's bronch, but the name and the identification number is one of the little boys who was in the same room as us. For a fleeting moment, I prayed they were wrong. They are further investigating the mishap with the name and the patient number, and are getting back to me. So needless to say I have Gage's bronch pictures with the correct last name but the wrong first name and wrong patient identification number.

Trach, another year, possibly longer, so why after this bronch this time, does it feel like a prison sentence??!! :( :mad: :banging:

Always,
Lisa

Isaac'sMomandDad
04-13-2009, 07:44 AM
I am sorry. It's a big step back, but they didn't say never, they just said not now. Sounds like an all around bad day.

Lara

faywrayy
04-13-2009, 08:35 AM
Does sound like a bad day all around. I'd be furious about the mix up with names and bronch results. How are you to truly know what's going on?? And why are they saying to wait another year?? Is his issue malacia -- I can't remember???

babybear
04-13-2009, 08:57 AM
I'm so sorry you didn't receive the news you had hoped for. Don't give up hope, however, things have a way of changing quickly, so Gage may still get his trach out sooner than the doctors are telling you. I certainly hope that's the case. :hug:

suzanne2545
04-13-2009, 09:22 AM
Ugh. Been there, done that, exactly. Parker went for a decan with an absolutely confident doctor. He'd been our ENT from day one. He was very confident and even went so far as to say that he is normally very pessimistic with his patients. Unfortunately, Parker's scope revealed that he'd developed collapse. Another year and a single stage LTP got our trach out but I felt sucker punched, just like you.

On a side note. I'd see if you can have another bronch, just to make darn sure that the results are correct.

KJKK8437
04-13-2009, 09:26 AM
:hug: :hug: :hug:

I don't know if you were on the Boards when Alex failed his first decan a year ago. It was all such a blur to me, but we were told much the same thing. "We'll try again next year."

Lisa -- I was crushed, crushed, crushed. A YEAR????? WHAT????

I'm with Angela -- I can't quite remember what the underlying issue is with the trach. Is it malacia? What do they mean by collapse? I'm very curious because we heard both those terms, and we had a lot of different opinions about what was the best thing to do. What do they think will happen in a year? Do they want his airway to grow, or are they hoping it will stiffen?

I'm also with Suzanne -- I'd want another bronch to be sure. And, depending on how comfortable you are with what they are saying about "collapse", I might get the repeat bronch from a second opinion doctor. I can say that with some confidence because that is exactly what we did with Alex.

:hug:

JWorthington
04-13-2009, 10:00 AM
I'm so sorry things didn't go as hoped. It's a real kick in the stomach when this happens. but, they should not have made such a stupid mistake with the bronch, I would definitely complain about that - I mean what guarantees do you have that it is the right bronch? Questions need to be answered here in my opinion.


:hug: :hug:
Julie x

Myself
04-13-2009, 11:22 AM
Sorry everyone Gage has severe trachea malcia. We have to wait another year because our hospital will only take a trach out in summer. Which leaves us with once a year.

I should have been more specific, they said the bronch does belong to Gage the other little boys in the room were having the sting procedure done by the same doctor used as Gage. They didn't have a bronch, they just used the little boys 1st name and his patient identification number on Gage's bronch.
Sounds bizarre hey? Should I request a new bronch by Gage's original doctor?
Although they did say those were Gage's images. Won't change the results though would it. Just to be sure though maybe?

Lisa

kirafaesmom
04-13-2009, 11:55 AM
I'm so sorry Lisa; I think I would ask for another bronch by your original doc just to be sure. What do you have to lose?

faywrayy
04-13-2009, 12:01 PM
Are you tied to the same hospital for insurance reasons? I'm not clear how things work in Canada. If Gage has no underlying lung issues, then why not try again in 6 mos, or at least another scope??? I was under the impression our hospital (CHOP) was the same (only decann in the spring or summer), but Kate's ENT said he'd decann her anytime because her lungs were healthy.

KJKK8437
04-13-2009, 01:26 PM
Are you tied to the same hospital for insurance reasons? I'm not clear how things work in Canada. If Gage has no underlying lung issues, then why not try again in 6 mos, or at least another scope??? I was under the impression our hospital (CHOP) was the same (only decann in the spring or summer), but Kate's ENT said he'd decann her anytime because her lungs were healthy.

Ditto for us.

Kira
04-13-2009, 01:49 PM
I'm sorry for the disappointing news.

mylesmom
04-13-2009, 02:35 PM
We were in the same position last June. We thought perhaps the trach might come out and when it didn't I felt worse than when they first put it in. Fast forward 8 months and now it's out. Luckily, we had a very good doctor who actually listened to us and worked along with us. He saw our son frequently and was constantly talking with other surgeons about options that would make decannulation realistic.

It will happen for you, it just may take time. I know it sucks doesn't it? But trust me, we've been there too.

My little figther
04-13-2009, 03:14 PM
I am so sorry that the results were not what you were hoping for. But they did not say never.
However I also would try to get a new bronch - having another first name on a test results might may you wonder and you have to be absolutely sure it is really your little one results.

Michelle

Hope
04-13-2009, 03:23 PM
Man, that just sucks all the way around. I'm sorry. But it's true, you're time will come, just wish it was sooner!

:hug:
Hope

Ainsley's Mom
04-13-2009, 04:45 PM
That is such a bummer. :hug: A year feels like such a long time. But, as we know time has a way of passing very fast. And things could turn around unexpectedly.

Niff
04-13-2009, 10:20 PM
Ugh, not nice. :hug:

alizesmom
04-13-2009, 10:50 PM
I'm sorry. :hug: Karen

cherienz
04-14-2009, 09:15 AM
Sorry that the news has not been as hoped.

If you feel comfortable with your original ENT doctor are you able to contact him/her to verify that the result is Gage's? Sometimes the hand me down info does not inspire confidence and if you trust your original docs reassurance it might be better to get it straight from them? I certainly don't condone the hospital making a mistake with names (I would be mad, mad, mad too), but their airways are quite unique - to a trained eye they should be able to verify whose results from previous bronchs?

I am by NO means a patient person, who accepts what is handed out - but there are 2 separate issues for you. Whether the result is indeed Gages and/or if it is then what to do about it. If it is his result, it just becomes a waiting game.

We too, work with summer for surgery. Otherwise the hospital is at capacity and full of bugs too. It is not what you want to hear, but I find that if they say, that's it for a year, you need to grow, whatever, then you learn to live with that and work on the things that you can try and make a difference with. I think it sucks... but you must make sure that if you have another YEAR at least that you have adequate support at home?

Mitchell's trache will not get removed till he has surgery for his stomach which has been postponed the last 3 summers. So, I am getting used to the disappointment and having to move on. We can only do our best.

Lots of Love
Cherie

T

cherienz
04-14-2009, 09:29 AM
I just reread my post and feel it sounds judgemental, I didn't mean it to read like that. Sorry. I can't get my words right tonight! It is just a ... time when you get told to wait ANOTHER year. BUT, that decision may also get reversed. Lets hope.
Cherie

georgana
04-14-2009, 03:47 PM
I am so sorry about the news. If it is any consolation we are all in this prison together hoping that one day we will be released! I am still waiting for good news myself after almost 2 years of the darn trach. No end in sight as of yet.
Hang in there, okay?

Big Hug,
Georgana (Mom of former 24 weeker Arturo who is currently still trached because of edema resulting from failed subglottic stenosis repair.)

Gretchen(Celia's mom)
04-14-2009, 09:27 PM
:hug: :hug: :hug:

Colin's mom
04-15-2009, 12:01 AM
I'm so sorry about Gage's disappointing bronch. It just plain sucks, I know. I wanted to reply because it was almost like reading one of my old posts from five years ago. The ENT that trached Colin at birth told us that he felt pretty confident that Colin would only need his trach 6 months or so. He bronched him first at 6 months. He said he still saw some malacia but thought it would likely be resolved by the next bronch. WHen he was 9 months old we took him back again. I had it marked in the calendar that this was going to be the day and told friends and family. I was so confident that I even packed a bag preparing to stay the night after decannulation. When the ENT came to the waiting room to find us, he told us that it looked good and the trach was OUT. We could go back and join him shortly and then he would need to spend the night for observation. We were elated to put it mildly. On cloud nine. About twenty minutes later the ENT comes back and tells us that when Colin woke up his Sats plummetted and they had to put the trach back in. JUst as you had said, I felt like I had been punched in the stomach. (I told a friend that just the other day when I told her this story). I was confused and angry. We were suppose to be done. I remember going back to recovery and just rocking my baby boy and crying.

All the ENT could say was that we could try again in another 6 months. He didn't have a reason why he failed decannulation. Shortly after, we took him for a second oppinion. The ENT scoped him in the office, which previous ENT had never done. Then tells us he has BVCP! Our first ENT had only diagnosed Colin with trachea malacia. For nine months he was our son's ENT and didn't determine that Colin's cords were paralyzed.

So, the second oppinion ENT of course decides he wants to do a bronch too. WHen he came to talk to us in the waiting room, he said we would just have to wait and see. I remember asking just how long would we have to wait and see if the cords would recover or not. He said if they were not moving by the time he was five or six, we could consider surgery. He must have noticed how unaccepting I was of that answer because he told me that life with a trach wasn't so bad. Colin was doing so well, very healthy otherwise. He could still lead a normal life with the trach. Like how selfish of me that I didn't want to wait another 4 years or so. At that moment before that man even left the waiting room, I decided he was not the ENT for us either and we were taking Colin to Cincinatti.

Sorry that was sooo long, I guess my point is if you decide to have him bronched again, how easy is it to get a second oppinion? Just to know for sure that nothing is being missed by the current ENT.

Lesley