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.