When is a Tracheostomy the ONLY option left?

our twin boys were born at 25 weeks and 5 days in a City 6 hours from our home.

We've been on the NICU rollercoaster for 6 months now and are nearing the end of our journey.

One of our boys has been at the hotel with us for 3 1/2 weeks now, which has been great, but we still have a son in the level 3 NICU with chronic lung disease.

He'll be 2 months (adjusted) in 6 days and we're beginning to feel much pressure from the doctors to consent to a tracheostomy, which we're not ready to do at this point.

My hope is that some of you are in or have experience with a similar situation and can provide your perspective on my line of thought.

The docs waited until my son's 'term' date to give him a steroid regiment of dex so as to try to extubate him from the ventilator. I thought all along that he just didn't like being intubated and constantly fought the tube, which made his statistics unstable.

He 'surprised' everyone but me when he did much better on the cpap than he did when he was intubated.

His oxygen saturation levels are much more consistent and he rarely desaturates. His CO2 levels were high initially, though (90's) once he started on the CPAP.

Our doc had discussed this condition with others who have much experience with babies with chronic lungs and they stated that they did not use the C02 levels as an indicator to reintubate, but the 02 requirements. He set a benchmark of 50% oxygen. If our son required more than 50% 02, then we'd need to reintubate.

He never did require this much oxygen, but his severe reflux was hampering his lung growth, compromising his airway, and threatening his ability to digest his food.

2 to 3 weeks after he was extubated and moved to CPAP, we consented to the g-tube and fundo placation procedure in hopes that ridding him of the reflux would allow him to continue to make strides towards the cannula and his discharge date.

Prior to the g-tube and fundo placation procedure, his CPAP settings were as follows: PIP of 8, no breaths, and oxygen of 40 to 45%.

The day after his surgery, he was succesfully extubated again to CPAP and his PIP (pressure support) moved from 8 to 7 by mid week. He was doing great! The best oxygen saturation levels we'd seen and his breaths per minute were averaging 30 to 50.

By Friday, our nurse and the nurse practitioner decided to reduce his PIP to 6 and it was too much for him to handle.

His lung partially collapsed on Saturday morning and Pandora's box was opened.

We were told that he would likely need a trach and that we needed to begin talks now. By Monday, another doctor had called a big meeting attended by at least 10 to 15 hospital staff and my wife and I.

I lost it. If i would have known that my son failing such an agressive test as to lower his cpap pressure support from 8 to 6 the same week as a major surgery would lead to him being dubbed as failing, i would have rather they just waited to push him so hard.

My thought was that we'd wait for some time after the fundo placation was performed and the damage caused by the reflux had time to heal before we even discussed a tracheostomy.

This week is the 3rd week after the meeting and the 4th week after the fundo placation.

Although his pressure support is still at a PIP of 8 on the CPAP, my son's 02 requirement is down to 38% and his recent blood gas tests yieleded a C02 levels of 59% and 79%, respectively in the last week.

So, we can definitely see improvement in his respiratory function since the fundo placation and gtube.

Our son will be 2 months (adjusted) in about a week, so the clock is definitely ticking.

At this rate (1 improvement in cpap pressure support per month) would put him in the hospital until 5 months adjusted age until his CPAP pressure support is reduced to 5 and he's ready for the canula.

This assumes that he avoids any major setbacks along the way.

Of course, who knows how quickly he'll move from the cpap from here on out. It could be exponentially faster than we estimate.

The doctors main argument is that they want to help us get home as well as keep his development progressing.

We understand this, but all of the occupational and physical therapists we've approached note that he'll be behind in any case b/c he's a premie. Also, we and the therapists work with him each day. He does all of the things that his brother who is home with us can do and is growing well and is very alert.

My question is when is our last deadline to agree that the tracheostomy is the ONLY option left?

My thought is that if he is not on a ventilator and just needs 3 to 4 months, then let's wait it out.

The echocardiograms do not show that his heart is stressed and he doesn't seem to be working too hard on the cpap based on how his respirations per minute stack up against other babies in the NICU.

Any advice / feedback that you can provide would be much appreciated.

Thanks....

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wow. my personal feelings would be like yours.just wait it out. Have they tried medications for the reflux also?have they talked to you about another round of steroids? some valium to keep him calm and relaxed?Seems he is closer to extubation than being trach dependant.my son was 27 weeks.severe chronic lung disease. he was never able to attempt extubation. cpap was not an option so i finally, and i mean finally agreed to have him trached.he also has a gtube(due to oral aversion.my son is 18 months old now.we have never been home.our discharge date is monday.THANK YOU LORD. i have lived here in the hospital with him since his transfer. It is not easy but i felt pressured to do all the surgerys.he has crappy lungs but i do see improvement."i get him now" i do most of his care. if you are in a hospital thats able to assign your son a primary nurse as well as nurses that are on his team, it would greatly benefit him. im kicking myself in the butt because now i know...he could of had better care from his nurses before he got the snowball effect.although the trach is only temporary.it is life altering.hang in there dad.stay positive you have a fighter and a gift.try not to compare him to his brother.every child is special and unique.

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if you need further advice or questions about my nicu journeys(my daughter was also 27wks) please feel free to contact my email.i can inbox you my phone number (shyasimmons@ymail.com)

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My son, a former 24 weeker, has severe CLD and a lot of what you are experiencing is similar in many respects. Our son did end up getting a trach at 5 1/2 months actual, however.

At about 9 weeks actual, my son appeared to be successfully extubated to CPAP. We were thrilled. However, as the weeks went by, he was not able to make any additional progress. When he reached term, the hospital began to push things, ie. trying a high flow cannula, going to bolus instead of continuous feeds. He had a severe pulmonary hypertension crisis. He was transferred to a major children's hospital where, after a few additional weeks, the decision to trach was made because the doctors feared stressing his heart through any attempts to extubate.

Your son's situation seems much better, mainly because he does not have pulmonary hypertension. This means that he can probably endure having to work a little harder to breathe. I would definitely hold off on the trach for now. Keep in mind, though, that as your son gets older, he may become far more resistant to CPAP. This happened to us. Our son would knock the mask off his face frequently (which was a major problem is someone wasn't standing right there to replace it) and he hated the prongs. Getting a trach would allow your to get home faster and give him more freedom of movement; however, once the trach is in, doctors will only take it out when a child is absolutely able to handle it. It is a long term commitment.

I would insist that you watch and wait for a few more weeks. If it comes to the point that your son is not making progress... or is making extremely slow process... then perhaps then it will be time to reconsider. I would also just be emphatic that any attempts to wean must be extremely incremental. Babies with CLD can only tolerate very slow and incremental change.

Good luck. I hope that your son turns a corner soon so your family can all finally get back home.

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Have they discussed a high flow cannula at all? I have read on here of babies who were switched to that, sometimes just to see, when the doctors didn't think they were ready yet, and they responded much better on it than to CPAP much to their doctors' surprise, in the same way that your son did better on CPAP than the vent. My son skipped the high flow step, going right from CPAP to low flow, but it's a thought. CPAP can be uncomfortable for them. If I were in your shoes, I think I'd be waiting too because CPAP isn't the vent and he does appear to be improving. Maybe even another round of dex if needed to make the transition to the cannula, but I think I'd give him a little more time too. A trach is a big step. But if it's a matter of months, it might be worth it to get him home. I guess I'd give it some weeks and see how he does, and maybe consider another round of dex and a try at the high flow, just to see. I've just seen several people talk about how their child was tried on that and responded better than they did on CPAP because it was more comfortable for them. It couldn't hurt to ask. It's great he's being worked with daily by therapists too.

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Sounds like a familiar story. My son, a former 29 weeker who is now 13 months also has CLD. When he was born he was intubated for less than 24 hours. After that he went back and forth between CPAP and cannula. If I can remember he was on a 5 or 6 on the CPAP. Somedays they would let him sprint ( a few hours on the CPAP, then a few hours on the cannula) . At that time, the docs thought he would go home with oxygen. When he was about a weeek before term he was taking about 75% feeds from his bottle and was on the high flow cannula, but it was too much for him. That Monday of the week he was supposed to go home he had to go back on CPAP. He was working too hard to breath and retracting a lot more. From what I have been reading on here it seems the doctors start talking trache around term dates. My son was transfered to the main campus of the NICU that he was at so that they could run more tests to see why he was not progressing. At this point a trache was mentioned. He was considered term by this point. Yes they tried drugs to keep him calm while he was on the CPAP. I hate the drugs. Its the reason why he is still in the hospital weaning. Twow days after his term date he got really bad and had to be reintubated. The docs were concerned about what long term reintubation would do to his especially seeing how he was term at this point and having a tube down your throat is not ideal. My son was on his 2nd round of steroids at this point (i think). Altogether we tried three rounds of steroids ( 1 after his trache placement, and it did nothing for him.
My advice is to try everything before getting a trache. The docs did a good job of removing all other variables. He had all kinds of genetic testing done, he was on diuretics to keep him "dry" and avoid any excess fluid buid up, he was rflux meds to eliminate any reflux. All of this while still trying the steroids. My son was only reinubated for 10 days so he does not have any oral aversions, which seem to cause a lot of grief down the line. Having a tube down your throat is not good for development, but neither is being sedated so that he can tolerate these breathing apparatuses.
I was devastated when they first mentioned the trache so I understand your feelings. But maybe I'm one of the only few who doesnt see it as a bad thing. Yes it's a lot of work. Theres equipment and supplies that you will have to drag around and keep organized at home. My son has never been home with his trache, so my only experiences are in a hospital environment.
Somethings to keep in mind for when deciding to get a trache: You want to do whats best for him. CLD is not going to go away with a trache. You will still have a very sick baby on your hands even if/when you go home with a trache. You should feel confident that the you and the docs have exhausted all other options before deciding to get one. I can totally undestand the " I want to give my son a chance to prove that he can do it" sentiment. It is one that is expressed on this board in countless situations. We all just want our babies to be ok and its tough when the docs are pushing drastic medical interventions. Also consider that he may not be able to speak with a trache without the help of a special speaking valve that he may or may not be able to tolerate. Please talk to your docs about that. If you have any other concerns please feel free to PM me on here.

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thanks to you all for your feedback. it really helps. our children have endured so much, it's often difficult to decide what really is best for them. it's encouraging that all of you have learned to manage the trach. i know that if my son needs a trach that everything will still be alright. we'll learn how to manage it and one day he'll be healthy enough for it to be removed. we're grateful to be in the position we're in, but as you know, we always want to try to maximize our child's situation.

this morning's blood gas showed that his C02 level was at 82%, which is worse than his last 2 tests that shows 59% and 79% C02 levels in the blood. we're not encouraged by this, but we also learned that he gained 5 oz. in just 3 days and now weighs 11 lbs.

So, it doesn't seem that he's working too hard due to his steady weight gain, but his lungs are having difficulty expelling the C02.

my thought is that we'll push the doctors to give him another 3 to 4 weeks on the CPAP if we can verify that his heart is not being overworked and his growth is tracking well. not looking forward to this as they look down their noses at us at this point because we're not going out of our way to follow their schedule.

if in 3 to 4 weeks, he hasn't been able to handle a lower cpap pressure setting of 7 or 6 at an oxygen level of 30% to 40% and is still having difficulty making more pronounced progress with his C02 readings, we'll have to consider consenting to the trach.

thanks again and i'm glad that our little ones have all made it this far.

i always try to keep things in perspective considering how blessed we are to have our two boys here at all.

best,

premiedad

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