First bronch surgery

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anonymous

New member
Hi,
My daughter is two years old and is scheducled for her first Bronchcoscipy (this can't be spelled right) this month. I think it is also called a tune up? I am a little scared about what this is going to be like. I know it is what is best for her, but I am still worried. Any of you who have children who have undertaken these tune ups, what was it like for you and your child? Do you have any advice for me? My daughter so far has had almost perfect health, so I am hoping they will find nothing and she will get to come home that day. Please share your experiences with me and I will let you know how it goes.
Thank you,
Lynsey -mom to Avery 2yrs. w/CF and Rhett 7 mos. no CF
 
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anonymous

New member
Wow. I was just going to post this same question. My daughter(who will be 4 in a couple of weeks) is having her first bronch on Friday and I have no idea of what to expect. Why is your daughter having one?

The second part to my question is what to tell my daughter. She is old enough to understand most things that I tell her so I'm not sure what to tell her about it. I don't want to scare her but I also want to be up front and honest with her. What has worked for other parents????

I am really nervous about this. Thanks.

Amy
 
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anonymous

New member
they give you verced(sp?) during the procedure which causes you to blackout so even though you are awake for the procedure there will be no memory of it.
 
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anonymous

New member
I'm a pro at bronchoscopies at this point. I've had about 6 of them i believe. I for a clean out for CF and the rest due to post transplant complications. Its a very easy procedure. They put you in a conscious sedation I believe its called. So you are still technically awake but you will not feel or remember anything. I remember when I got cleaned out for cf I felt immediately better when I woke up. The junk was all out of my lungs and breathing was a little easier. Expect your little ones to be out of it for the day. Very sleepy, possibly a little nauseous from the meds. I would be honest with your 4 year old and say the doctors are going to put you down for a nap for a little bit so that they can do some tests. Or something to that nature without getting all too technical for a four year old. I think that's it....if you have any other questions post and I'll get back to you.
Margaret
Double lung 11.11.04
 
K

kathiel

New member
My daughter had her first bronch in April, and yes it is scary to send your baby back, but hers was done to see why she was suddenly getting sick and not getting better. She had a few problems with oxygen saturation when she came out and needed oxygen for a few hours but we came home the same day and everything was fine.
good luck and best wishes.
kathie
 
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NoDayButToday

New member
I've had several bronchs. I don't remember anything from any of them (although I once saw the film of what they saw inside my lungs, that was interesting). The one thing I can say that is notable about the post-bronch time is that I had a slightly sore throat, but nothing that wasn't cured by a cool drink or some Jell-O.

Just for your future CF knowledge (and you'll soon have an encyclopedic mind about CF), a tune up is slightly different from a bronch. Tune up generally refers to a course of IV antibiotics, sometimes along with orals or inhaled. A bronch may be a part of the course. Bronchs alone though, I guess would just be classified as a bronch.
 
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anonymous

New member
My daughter is 2 1/2 and has had three bronchoscopies. The first was at 7 mths. Like Coll mentioned, a bronch and a tune-up are two different entities. However, Samantha has been sedated where the bronch was preceded by a picc line placement (for IV antibiotics).

Samantha has had bronchoscopies because of repeated respiratory flare-ups with negative throat cultures. The first bronch cultured Pseudomonas, the second Stenotrophomonas, and the third showed signs of aspiration.

She has always recuperated quickly from the procedure and the sedation. She needed some oxygen after the first bronch, but was fine after an hour or so. The third bronch was actually a Godsend, she went into it with some terrible sounding lungs and came out sounding beautifully the next day. The docs said they must have really cleaned her out!

It is traumatic and very scary for Samantha to have these procedures. As a parent it is an awful feeling to give your child to the nurse (to be sedated) and turn and walk away. I can honestly say that neither Samantha nor I will EVER get used to that. BUT, because of the careful monitoring and aggressive care that Sami has received, she is doing much better now. She has yet to culture Pseudomonas again after that first bronch. She cultures Steno. on and off, but since we know about the bug now, she is quickly given a round of Bactrim, followed by IV's if the Bactrim isn't effective.

As invasive as they are, the bronchoscopies have always given us a lot of valuable information to provide her with the best and most accurate treatment. Hopefully, though, she won't need another one for a long time.

Also: Before her last bronch, I did tell her that the doctors were going to look in her lungs (I put my hand on her chest) and help her feel better. The fact that she did feel much better after the procedure probably helped her understand that they were doing a good thing, and not trying to hurt her.

Maria (mother of three daughters, the youngest, Sami w/cf)
 
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anonymous

New member
Hi it's Lynsey again,

I think I understand the difference between Bronchs and Tune-ups now. My daughter is having a Bronch and if they see that she needs the pic line and anti-biotics then she will receive a tune-up. Is that right? So far my daughter has had no respiratory problems. Her doctors say all new CF diagnoses need to have a Bronch so they can see where she is in the beginning stages. Her doctors are what is considered to be very aggressive in CF treatment. They do Bronchs on all their patients who are willing, once a year. Are anyone else's doctors aggressive like this?

Thanks,
Lynsey-mom to Avery 2yrs. old scheduled to have first Bronch this month
 
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anonymous

New member
Hi Lynsey,

You are right about the bronch and tune-up now <img src="i/expressions/face-icon-small-happy.gif" border="0"> I don't think Samantha would have had any bronchoscopies unless she had really needed them. She has had a lot of respiratory problems. I don't know if I would agree to have one done if she was doing well with no respiratory problems.

You should get the doctors to explain all possible risks before the procedure and then make your decision. You can also search for information online, just search "Bronchoscopy". I did that before Samantha's first one. Does your daughter culture anything?
I would just try to be as well informed as possible as it is an invasive procedure.

Maria (Sami's mom)
 
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anonymous

New member
I would consider my daughter's CF doctor pretty proactive (when comparing her to 2 other doctors we have seen and others we have heard about) but she has never mentioned having a bronch. Just an FYI, I have never heard of someone doing a bronch just to be "agressive". Doesn't mean that it doesn't happen, but I have contact with lots of parents with children that have CF (especially infants/toddlers) and I haven't heard a single one mention this being done.

If she does have the bronch done, I hope it goes well and gives you a good look as to what is going on in her lungs.

Hugs,
Kelli (mom of Sydney 2wcf)
 
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anonymous

New member
I have never heard of a bronchoscopy being done routinely. They are very invasive procedures that can be very dangerous. And it was never discussed as a way to "see where things are at" when my daughter was first diagnosed. They did chest x-ray and ultrasounds to determine what her lungs looked like. She is 13 and has never had a bronchoscopy done and I am 37 (with CF) and have also never had one done.
 
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SeasonsOfLove

Guest
Bronchs are not minor procedures and usually aren't done unless someone isn't responding well to the medications that a regular sputum culture recommends. I think the idea is the bronch will show if there's some bug down in the lungs which doesn't come out in the sputum.

I actually had the opportunity years ago to watch one of Coll's bronchs - when they first started I thought I'd made a mistake (my knees went weak and I felt sick!) - then I calmed down and it was very interesting. Coll made everyone in the room laugh as she came out of the sedation because her first words (in a very loud voice) was "My throat hurts like hell"!

Good luck,
 
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S

New member
i actually "woke up" during one of my bronch's once. worst feeling ever! i basicaly felt like i was drowning due to all the liquid in my lungs. the worst part is that since you are awake for the procedure there is no way to explain to them that the verced has worn off, not to mention the tubes in your mouth that inhibit speech. it wasn't until after it was all done that i could tell them what had happened. i'm sure i will be getting a little extra dose on my next one.
 
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cfmomma

New member
That's terrible. I woke up during a colonscopy and during an endoscopy. It is very traumatic to be completely helpless and unable to communicate. The doctors always said I wouldn't remember anything when I woke up, and were shocked when I could repeat the conversations they had while I was "asleep". The Dr. that did my last scope was awesome and gave me enough drugs to knock out a 300lb man.
 
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