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Peyton's Parents
04-14-2009, 08:40 AM
Sounds like we aren't the only family who was given timelines around decannulation and then those dates keep changing. I wish doctor's would be more realistic and worry less about what they think we want to hear. However, the worst part for me about discussions we have with docs about the trach is the comments they make.

"She already has the trach so what the difference is another year or two?" I can't tell you how many times I have heard this! But my very favorite was from an ENT a few weeks ago, "I know you probably want her to go swimming." Yes - that is the only reason I would like the trach removed - because I would like her to go swimming. Are these people really that clueless about what life is like with a child with a trach? It isn't about going swimming! Our relationship with the trach is love/hate. I am eternally grateful because without it my daughter may not be with us. But it changes the way we live and until these people lived life with a trach they will never understand that.

T-bone
04-14-2009, 09:11 AM
I have heard the same things over the years. From their perspective the trach is easy. Our kids are doing well with them. It is easier to vent them for surgeries and when they are sick. Whenever Abby has surgery they are happy that she has the trach because it makes their lives easier. (so glad that we could accomodate)

Until you have a child with an artificial airway no one will ever know what it is like.

That is why this board is so great, we can vent here all we like.
I have a neighbour and if I say anything negative at all, she reminds me to be thankful for everything that I have.
I know that and trust me I am so thankful, but every now and then you should be allowed to vent, and say how much it truly does SUCK.

Just take what others say with a grain of salt. I accidentally ripped out Abby's trach a bit ago and a friend actually said to me that she knew how I felt because she ripped her daughters earring out. hahaha An artificial airway or an earring. People really have no clue.

All the best.

Tess

KJKK8437
04-14-2009, 09:15 AM
Yeh, some of them just don't get it, do they? They have no idea. We had a doctor like that -- the one who trached Alex. Honestly, I switched to another doctor in the practice as soon as we were discharged. I know this guy loved kids, but I just couldn't deal with his attitude.

I also had problems with the doctors that want to "wait and see for another year or so". I know that for some kids, this makes sense, but the guy who said that to me did so because he didn't want to try to figure out what was going wrong. He warehoused us. I know that sounds harsh, but I have a lot of reasons to think this.

But, there are the good ones, aren't there? The ones who say, "This will be hard, but you can do it." Or the doctor who said to me, "What you and your family are going through is trauma. It is changing you, and it has changed you, and I can't possibly understand how hard it is because I haven't lived with it." Or the ENT that called Hope his hero. Or an ENT of mine that said, "Together, we will get through this. I promise." Or, the ENT that did Alex's LTP, whose first words to me were "How can I help?" and then he proceeded to tell me that there was no reason in Alex's case to wait an entire year before trying something else. He understood that a year is a long time to be doing nothing but waiting for another bronch -- at least for us. I like to remember these doctors every time I hear some crappy comment. I didn't always know that there were doctors out there like this, and if it weren't for this Board, I wouln't have always kept trying to find something that worked for us. I wouldn't have known it was possible.

IMO, you are very justified in being aggravated. I mean, what the :censored: kind of comment is that, "what difference is another year or two?" Does he even HAVE children? As a parent, we have to make choices. As parents of medically fragile children, we have to make compromises we do not want to make. That's a given. But to undertake "another year or two" of those compromises for no articulable reason, that's intolerable. I rank this comment up with the resident who said to me, "Even if Alex is over medicated, don't you just want to wait two weeks until the problem works itself out?" (Excuse me? Have my child sleep for two weeks for no good medical reason? Thankfully, when I got him to another doctor, they disagreed.)

Some parents make choices to keep the trach in longer then they absolutely have to. I have no doubt that these parents have made these choices for very important and deeply personal reasons that they felt were in the best interests of their families. I also know that there are parents who had the LTP at the earliest opportunity, rather than waiting another second, because THEY thought it was in the best interest of their families. But these are REASONS. "What difference will it make" is an excuse, and a heartless one at that. Hopefully the doctor really had something intelligent behind the comment and it just came out badly. If not, then it is more than time for a second opinion.

Sorry for my soapbox, but these kinds of comments just burn me up.

babybear
04-14-2009, 09:16 AM
I think some doctors tend to forget about all the potential problems a trach can pose, especially infections. I agree with you, I'm grateful that Gabriel has the trach, but I feel so sorry for him, too. I know he's so uncomfortable at times, and I can't wait for the day when he can be decanned. You know your daughter better than anyone, so if you feel like she's ready to get the trach out, keep pushing the doctors to move in that direction. :hug:

KJKK8437
04-14-2009, 09:18 AM
I have heard the same things over the years. From their perspective the trach is easy. Our kids are doing well with them. It is easier to vent them for surgeries and when they are sick. Whenever Abby has surgery they are happy that she has the trach because it makes their lives easier. (so glad that we could accomodate)

Until you have a child with an artificial airway no one will ever know what it is like.

That is why this board is so great, we can vent here all we like.
I have a neighbour and if I say anything negative at all, she reminds me to be thankful for everything that I have.
I know that and trust me I am so thankful, but every now and then you should be allowed to vent, and say how much it truly does SUCK.

Just take what others say with a grain of salt. I accidentally ripped out Abby's trach a bit ago and a friend actually said to me that she knew how I felt because she ripped her daughters earring out. hahaha An artificial airway or an earring. People really have no clue.

All the best.

Tess


Oh, Tess, your story reminded me of something a dear friend of mine said. Now, in her defense, she only saw Alex a few times before moving across the country. But she read his blog and kept up. But once she said to me, "You are so lucky to have nursing care so you don't have to get up with the baby at night. I'm so exhausted getting up to feed my daughter."

I've tried really hard to forget she ever said that.

cherienz
04-14-2009, 09:51 AM
I have to comment on this one too. I/We are lucky because our children have survived and I know this is better than losing a child (whether that is miscarriage, still birth or a child). I AM GRATEFUL that my son lives via a vent/trache. I AM. But it is hard.

But, UNLESS, you live it you don't understand. AND i wouldn't have, if it wasn't me. I have given up thinking someone else might get it. Fortunately, for me, my husband, mum and best friend have remained VERy supportive.

As far as health professionals go, we have had some amazing ones - who have done their utmost to get us the help we need. I truly believe, that we have been lucky to have a few key people who have tried their best to make it better for us at home. In fact, they have been amazing. BUT, it is not just about the child's medical care, but it is also about the parents sanity.

Living this life, is not what we expected. About 9 months ago, another parent of a trache child that I know commited suicide. This was a wake up call for me, to register to myself, that we are not supermoms/dads. Sometimes, we cannnot cope. A lot of our key health workers were the same - I think it was a wake up call for them too. This forum is healthy to be able to vent. It is not easy to ask for help - where do you go??

To be honest, I expect that a Doctor, ENT consultant whatever, should have had enough experience to realise that life after a trache is not easy for the family. In NZ, our very special and lovely, PICU intensivist has said that no parents of kids that went home on vents have had a marriage survive. We are trying to reverse that. A few years ago, kids would not have gone home with a trache.

Lets defy the odds, realise that 'some' of these people who are our specialists haven't lived it. We have or are. Good on us.

Thanks for the support that we get here.
Cherie

Ann
04-14-2009, 10:02 AM
In NZ, our very special and lovely, PICU intensivist has said that no parents of kids that went home on vents have had a marriage survive.

I heard the same thing from Jack's neurologist - there's a 99.9% divorce rate for parents of trach/vented kids (in her experience).

I would only add that as much as we are taken back at the time an insensitive comment is made by a medical professional, it's important to call them on it. Whether it be at the time it's made or at a later date via a phone call, an email or a letter. It's important that physicians who deal with medically complex children be reminded - in a respectful way - that there is nothing easy about this life and if they are going to care for kids like ours, they need to be more sensitive to our situation. It shouldn't require the extreme of a parent's suicide to give these docs a wake-up call.

suzanne2545
04-14-2009, 10:22 AM
I heard the same thing from Jack's neurologist - there's a 99.9% divorce rate for parents of trach/vented kids (in her experience).

I would only add that as much we are taken back at the time an insensitive comment is made by a medical professional, it's important to call them on it. Whether it be at the time it's made or at a later date via a phone call, an email or a letter. It's important that physicians who deal with medically complex children be reminded that there is nothing easy about this life and if they are going to care for kids like ours, they need to be more sensitive to our situation. It shouldn't take a parent's suicide to give these docs a wake-up call.

We were never vent dependent but we were given bleak odds about marriage just with a trach and other young children in the house. We took the social workers advice to heart and went on many many dates while Parker was in the hospital and after.

I wanted to agree to with Ann on calling doctors out. There is a right way to do it and I have one example that shows how appreciative doctors can be: In the NICU Parker had these episodes. They were related to his BVCP. We called them his purple spells. One day, on rounds, our neonatalogist had some new residents with her. She was this tall, distinquished, very experienced doctor. She had this air about her. She said, "This darling boy is Parker! He is just perfect except for these dying spells he experiences as a result of his BVCP . . ." That was the first time I'd heard the medically accepted term "dying" or "death" spell. As they were leaving I stopped her and said, "You know, I'm a third time mom, I've seen a lot. I have thick skin. I also know that this term is probably "proper" but it is very disturbing to a mom to hear the term "dying spell" associated with her newborn. We prefer the term "purple spell."

You know what she did? She hugged me and said, "My goodness, you are so right. I've used that term for years and no parent has ever had the guts to tell me how scary it must be to hear that."

From that day forward she said "spells" or "episodes" on rounds.

The other thing we have to remember is that, as with everything in this world, everyone has different tolerances for different things. Some things bother me that don't bother others. Some things it wouldn't even make me flinch but to the next person it is earth shattering. And sometimes, we make decisions to accept things that we don't like because we know that outside of the "issue" our child is getting superior care.

LKN
04-14-2009, 11:00 AM
I don't think hearing this stuff gets any easier. We are almost 4 years into it, and it still causes me a lot of angst.

At the hospital where Nathan was in the NICU, we heard over and over about how near to death he was and how he was probably going to die. It was awful. Even after he defied the odds and was home with us this hospital kept insisting that things were going to go wrong and he would never live a "normal" life. It was exhausting and extremely unhelpful. We transferred his care to another hospital and never looked back.

Part of surviving this life for us has meant standing up for ourselves and for Nathan--as others have said--but it also helps to know that there are other parents who know what this life is like. Make sure you take time as a couple to talk and be alone. Use respite if you have it! We are here for you.:hug:

JWorthington
04-14-2009, 01:22 PM
You have every right to vent. As everyone else has said - most doctors do not get it. Unless you have lived the trach life you simply cannot understand it. ENT doctors place a trach, scope and do airway surgeries, and of course we are grateful to see our children breathing so easily. But, they are not the ones living it 24 hours a day and seeing the strain it puts on the entire family, the siblings and the marriage, it's a life changing experience. Since Sam had his trach we have taken very few holidays and the few that we have taken have been close to home, no flights to sunnier climes for us. also, just getting trained care for school and respite and the amount of time you give up yourself to support the care that is supposed to be supporting you. I should have a job, but because of the number of appointments Sam has and the times I get called into school because someone is sick or someone needs to have a break, means I can't go out to work.
Feel free to vent anytime you like, we are here for you:hug:

Julie

Peyton's Parents
04-14-2009, 02:55 PM
Yeh, some of them just don't get it, do they? They have no idea. We had a doctor like that -- the one who trached Alex. Honestly, I switched to another doctor in the practice as soon as we were discharged. I know this guy loved kids, but I just couldn't deal with his attitude.

We recently tried to swith to an ENT that was not associated with the medical group that put her trach in. The receptionist told me in not such a nice way that the ENT wouldn't take Peyton. Since he didn't put the trach in he didn't want to be responsible for it or for trying to get it out. Huh???? Is this common in the trach world - you're stuck with the ENT who put it in?

KJKK8437
04-14-2009, 04:18 PM
We recently tried to swith to an ENT that was not associated with the medical group that put her trach in. The receptionist told me in not such a nice way that the ENT wouldn't take Peyton. Since he didn't put the trach in he didn't want to be responsible for it or for trying to get it out. Huh???? Is this common in the trach world - you're stuck with the ENT who put it in?

In my experience ... no. Our new ENT had no problems taking us on. He would have done so regardless, simply because he wanted to help, but he did so especially because he knew we were having troubles getting the trach out. Certainly Dr. Cotton doesn't turn away kids because he didn't trach them. If for some reason we hadn't been happy with our options at DC Childrens, we would have gone on to Philadelphia to see Dr. Jacobs. From what I understand, he wouldn't have had a problem seeing us either.

If you want another opinion (and I'm not saying you should or shouldn't), perhaps someone on the Board can recommend one for you.

Alethia
04-14-2009, 06:18 PM
We've been relatively lucky with our docs. The most tactless one we've got is Angus respiratory consultant, but he's been a lot better since he's got to know us and see us as proactive advocates for Angus. He took it quite well when I phoned him and told him literally how "P*ssed off" I was with all the prevaricating and delay tactics the Health Board were using in relation to funding for Angus' surgery. I expected him to be very short with me and intolerant - I was barely holding together at the time - but he was matter-of-fact and helpful. As Suzanne pointed out, sometimes you have to let them see you as you really are, and hear what you really think about the things that they say. It's hard to do that because we're either so shocked at the time we can't say anything, or we're so angry/hurt that we're afraid to open the flood gates in case we can't control what comes out. Like so many things we deal with, it's a balancing act.

Kira
04-14-2009, 06:21 PM
I agree with everyone's comments. It is an amazing journey with a child with a trach. I admire all of you adults with trachs on this site also. I was told that Jaci would have her trach for about six months, and now she has almost had it for seven years. I also have had very interesting comments made to me. I finally have realized/decided that most people really do mean well, but they just don't understand because they have not been through our situations. Some remarks are unbelievable and I agree that people should be called on it, especially medical staff so they can be more sensitive to the next person.

Ainsley's Mom
04-14-2009, 11:07 PM
"She already has the trach so what the difference is another year or two?"

:rofl: I reeeeaaalllllllly wish there was a way for EVERY single person who makes that comment to have a trach themselves so they can see first hand how it's "not a big deal". Like making teenagers pretend to have a real baby. KWIM? - Seriously maybe every ENT should undergo sensitivity training by have to wear a trach around their neck for a week. They could experience it for themselves. The rules would have to be no talking and eating tasteless food. Of course they'd have to carry around a suction machine and all the emergency equipment and spare trachs at all times. For fun they should definitely use the suction machine for pretend suctioning lots of times at very awkward moments throughout the day. And sleep with an oximeter and warm mist on at night. Oooh this could be fun. Maybe after a week of that they might start to "get it", kind of, since of course it would be pretend and they wouldn't get to experience the fear that their life was actually at risk or worry that their development would be harmed. :devil: MAYBE then they'd work as hard as they could to help their patients get their trachs out as soon as possible and stop making stupid comments like what's another year or two.

Ann
04-14-2009, 11:10 PM
:rofl: I reeeeaaalllllllly wish there was a way for EVERY single person who makes that comment to have a trach themselves so they can see first hand how it's "not a big deal". Like making teenagers pretend to have a real baby. KWIM? - Seriously maybe every ENT should undergo sensitivity training by have to wear a trach around their neck for a week. They could experience it for themselves. The rules would have to be no talking and eating tasteless food. Of course they'd have to carry around a suction machine and all the emergency equipment and spare trachs at all times. For fun they should definitely use the suction machine for pretend suctioning lots of times at very awkward moments throughout the day. And sleep with an oximeter and warm mist on at night. Oooh this could be fun. Maybe after a week of that they might start to "get it", kind of, since of course it would be pretend and they wouldn't get to experience the fear that their life was actually at risk or worry that their development would be harmed. :devil: MAYBE then they'd work as hard as they could to help their patients get their trachs out as soon as possible and stop making stupid comments like what's another year or two.

Amen Susan!

Colin's mom
04-15-2009, 12:41 AM
I used to think that maybe we make this look too easy.:rolleyes: My worst comment was from our second ENT. (See the other post). I could not believe that he was telling me that life with a trach wasn't so bad. Like it was no big deal to do it for another 4 years or so. I mean Colin was doing so well with it and otherwise a very healthy kid. I so wanted to ask him if he knew personally what it was like having a child with a trach. Because just like you said, you have to live your life differently. Back then, if Colin had needed to keep the trach because there wasn't any surgical intervention. Well, then I would have learned to accept that and we would still try to live life to the fullest. However, if there was surgical intervention then we wanted it for Colin. We will do the same for Fintan if need be. It just ticked me off, still does, that he implied that it was for my benefit that I wanted the trach out. What we went through with Colin put a huge stress on our marriage. Thats something they don't see. As everyone has said, unless you have lived it, you just don't know.

lynn
04-15-2009, 12:56 AM
I am fighting a similiar battle with our pulmo right now about weaning from the vent.. everytime I bring up sprinting the reply I get is -"he's been on it for over 2years, you should be used to it now. What has changed?" as if I want to get rid of the vent for no reason. How about the fact that my son is 2 and is trying to walk, and he gets so frustrated being tied to a 6 foot leash!! My reality is the trach will probably be there for years if not indefinately... I just want a few hours of "typical" play time for Joseph. I looked at the doc after he questioned why and replied "because he is a child, and he has no mobility issues other than being strapped to a machine that weighs 3lbs more than him." :banging:

Niff
04-15-2009, 09:20 AM
I am fighting a similiar battle with our pulmo right now about weaning from the vent.. everytime I bring up sprinting the reply I get is -"he's been on it for over 2years, you should be used to it now. What has changed?" as if I want to get rid of the vent for no reason. How about the fact that my son is 2 and is trying to walk, and he gets so frustrated being tied to a 6 foot leash!! My reality is the trach will probably be there for years if not indefinately... I just want a few hours of "typical" play time for Joseph. I looked at the doc after he questioned why and replied "because he is a child, and he has no mobility issues other than being strapped to a machine that weighs 3lbs more than him." :banging:

I think sometimes medical professionals do what's easy for them. It's easy to say that your son is vent dependent. It's much harder to sprint him in a home environment because you will be constantly going in to the doctor for check ups to look at the progress. Nevermind if that's what is best for you child - it's just too much work for them. Our children's hospital wanted to discharge Mackenzie on a vent as vent dependent, and after fighting to come back to our home NICU, Mac made it to a CPAP and is on a trach collar for 2 hours BID. We'll still be using a home ventilator but it's one step in the right direction. The goal should never be to continue vent support -- it should be to wean as much as possible. Not to mention that vent pressures are actually bad for the lungs. Very bad pulmo and you should pop him with a rolled up news paper. :p

KJKK8437
04-15-2009, 09:38 AM
:rofl: I reeeeaaalllllllly wish there was a way for EVERY single person who makes that comment to have a trach themselves so they can see first hand how it's "not a big deal". Like making teenagers pretend to have a real baby. KWIM? - Seriously maybe every ENT should undergo sensitivity training by have to wear a trach around their neck for a week. They could experience it for themselves. The rules would have to be no talking and eating tasteless food. Of course they'd have to carry around a suction machine and all the emergency equipment and spare trachs at all times. For fun they should definitely use the suction machine for pretend suctioning lots of times at very awkward moments throughout the day. And sleep with an oximeter and warm mist on at night. Oooh this could be fun. Maybe after a week of that they might start to "get it", kind of, since of course it would be pretend and they wouldn't get to experience the fear that their life was actually at risk or worry that their development would be harmed. :devil: MAYBE then they'd work as hard as they could to help their patients get their trachs out as soon as possible and stop making stupid comments like what's another year or two.

PRICELESS! OMG THIS IS FANTASTIC!

Mom2TwinsPlus1
04-15-2009, 07:35 PM
You know some days I feel so lucky we were told Emma would always have a trach, we were never given hope of not getting off of it. Atleast we know what we are up against. I feel bad for those of you who don't but I also feel jealous because that means you have a good shot of getting rid of the trach!

I agree people just have no clue unless they are in their shoes.

Oh and per the 99% divorce rate for vent parents. That reminds me of when we were in our vent training and our doctor asked us stuff like "How long have you been married (at the time 10 years) how long did you date before marriage? (2 years) and then he got into "what kind of birth control do you use, have you ever cheated on each other, what is your religion." Um thats when we stood up and said none of your business, we told him none of that could possibly have to do with Emma getting a vent. He got pissed and left the room.

I guess he wondered if we might divorce? I honestly think had we gone much longer without the vent both of us would be so emotionally and phsyically tired from bagging for hours on end that we might not have to worry about divorce cuz we probably would have killed each other! LOL ok not really but I think the stress would have been added had we NOT taken the vent versus taking it.

cherienz
04-16-2009, 10:58 AM
I think we should send these comments to all our ENT, respiratory, Picu et al doctors!!! Maybe some would absorb it! If you ever get a chance to participate in a forum/panel for feedback these would be great examples!!

I had a previously positive spin on some of our docs and still do, but want to share in the belief from lots of other mums/carers out there that you must call the doctors on inappropriate feedback. It is learning as a parent to fight the battles that are important. AND, when you get to a stage that you have the energy to advocate for both your children and those that will follow. We have had great doctors, but equally we have had our share of bozos.

Thanks everyone for sharing on this one.
Cherie