trach date and what is to come

If you would have told me that I'd be excited about getting Antonio's trach scheduled a few months ago I couldn't have possibly believed it. Even up until a couple of weeks ago. He's on the schedule for Monday, and we're very at peace with it all. We've grieved what we knew could be the loss of bringing home a "normal" baby or even bringing home our baby at all for months now. I wanted to think that if I fought hard enough for him I could overcome the obstacles that were put in his way since the day that my water broke. Do I still think some things could have been handled differently, maybe allowing less damage to be done to his lungs by the vent? Possibly. Do I think that he would have been able to leave the hospital without at least a nasal cannula giving him oxygen? No. Do we know that we are blessed beyond measure that we still have him with us and that he's able to even have the trach in order to come home with us? Absolutely. 

The home vent doctor that we spoke to on Tuesday pushed all of our fears of making the wrong decision out of the way for us. Even if we were to extubate him to the really high flow cannula or the mask that gives pressure, he would still have to have his arms down to keep him from pulling them off. He would still need to be very sedated in order to not get worked up (which could cause him to be reintubated). Once he has an established trach he should be able to be weaned off of the sedation and start doing lots of therapies. The trach allows us to support his lungs for as long as they need supported without hindering his development nearly as much. He'll be 44 weeks gestation on Friday, meaning that he's now technically 4 weeks old. He's not a "newborn" anymore, so he really needs to be able to get moving. It's crazy because he's truly 4 months old, and it's going to be hard to hold both of those realities at the same time. I know I post the cute sleeping or alert pictures in these updates, but there are still in between moments where Antonio is uncomfortable and breathing very irregularly and squirming around, which then makes us have to give him extra sedation. He's already on 3 different sedation drips constantly. Everyone's hope is that he'll be more comfortable without the tube in his mouth, meaning he'll have less of those moments and need less sedation. 

She also doesn't expect him to need the vent more than 2 years, which is the average time that babies with severe BPD come off in the studies that they have. Antonio has no known brain issues and will be coming home with us instead of going to a facility, so he's already ahead of the curve in a lot of ways, which should put him well below the average in terms of length of time he'll need the vent. They have found that those factors are most important when it comes to how quickly their lungs develop and improve. The trach is obviously not the outcome we wanted, but I've seen it coming since before he was born. I asked his doctor during our first sit down conversation in the first couple of days if he would need a trach, he said that it was a possibility, but if he chose the path of survival that the need for the trach would be slim. The home vent doctor told me when I asked Tuesday that it's a very small percentage of these babies that need the trach. I couldn't hold back my tears, it does feel like we failed Antonio by letting him fall in that category. But, she also said that they have many many babies die in situations just like his. We knew since before he was born that was also a possibility, and we know realistically that this is nowhere near what could have been his worst outcome. And I can honestly say at this point that we will be able to give him wonderful quality of life, which was always our goal. He dodged a slew of bullets that many preemies face, let alone ones that have a course like his. We aren't completely out of the woods yet of course, but the tone has definitely shifted in our conversations with the providers regarding his prognosis. 

I thought it would be good to kind of recap and redefine some things now that I can finally breathe a little. My mind isn't totally overwhelmed with questions to ask on rounds and ways to help him get better each moment in order to work towards extubating. We just have to hold steady for a couple more days. 

--PPROM (Preterm Premature Rupture of Membranes) - "Sometimes the membranes break before a woman goes into labor. When the water breaks early, it is called premature rupture of membranes (PROM). Most women will go into labor on their own within 24 hours. If the water breaks before the 37th week of pregnancy, it is called preterm premature rupture of membranes (PPROM)." The baby needs the fluid in order to practice breathing and develop their lungs. Because Antonio didn't have much for 4 weeks, his lungs were more underdeveloped than they would have been if he was simply born at 25 weeks gestation. 

--BPD (Bronchopulmonary dysplasia) - "A form of chronic lung disease that affects newborns, most often those who are born prematurely and need oxygen therapy. In BPD the lungs and the airways (bronchi) are damaged, causing tissue destruction (dysplasia) in the tiny air sacs of the lung (alveoli). Babies are not born with BPD; the condition results from damage to the lungs, usually caused by mechanical ventilation (respirator) and long-term use of oxygen."

--Often I'll talk about the BPD team here - this is a team of physicians and providers that formed to try to improve treatment of BPD here about 5 years ago. There are many hospitals that are part of a BPD collaborative, Nationwide also being one of them. Unfortunately, there is still not a hard and fast treatment plan for BPD, meaning that even the hospitals within the collaborative treat it differently. They talk about the BPD babies every other week here and give recommendations to the attending neonatologist (each neonatologist is only “on” for a week or 2 weeks at a time) on how best to manage the baby. I'm not sure what role they will play once he's trached, I think he'll be managed by the chronic vent team more.

--Tracheostomy (trach) - "a surgically made opening (called a stoma) in the front of the neck that goes directly into the airway (trachea). A tracheostomy tube, or trach tube, keeps the pathway open so air can go through the tube into the airway and into the lungs."

Antonio will also be having a gastric tube, otherwise known as a  G-Tube, placed at the same time. This will allow us to continue to give him tube feeds and medications without having to have a tube in his nose or mouth, completely freeing up his face! He'll have that as long as he needs it, just like his trach. The hope is that he'll be able to work on oral feeds and eat by mouth, but we'll have it in for a long time in case he has trouble. We have no idea if he'll have oral aversion from being intubated for so long. I'm not sure if he'll have a "button" like the picture below or a longer tube yet. 

He's going to need a laser procedure to complete the treatment of the ROP (retinopathy of prematurity) in his eyes, but the eye doctor wanted to wait a while instead of adding that on to his surgeries Monday like they sometimes would have done. 

So, the path will look like this if all goes as planned: 

1. Trach and G-Tube Monday. Tonio will have to be very very sedated for 5-7 days so that he can't move his head in order to "establish" his trach stoma. Basically heal up, though his stoma won't totally heal for months. We've been told the first few days could be very rough as he adjusts to breathing a new way. Friday or the next Monday the ENT team will do his first "trach change" where they just switch out the actual trach tube in order to check how the healing is going. If all is well we will be able to start doing more with him and learning how to care for his trach. 

2. At any point after he comes back from surgery if a PICU (pediatric intensive care) bed opens up we could be transferred to the PICU. They have a section on their unit specifically for "chronic vent" kids. Apparently they try to keep the same nurses and RTs in that section so they are more experienced with the training. We are so sad because we finally have a list of primaries and have at least met most of the nurses down here so we aren't seeing new faces constantly. Time to start all over, again. Hopefully this time he'll be more stable after the transition so it won't be so stressful. 

3.  Training- Fredy and I have to go through significant training including a long check list, two 8 hour shifts, and one 24 hour shift where we are the sole caregiver for him to prove we know what we're doing. There are scary parts about having him home. If his trach comes out in an unplanned way it can be very dangerous, even fatal, if we can't get another one in immediately. The training takes about 6 weeks, so we know we'll be here at least that long.

4. Weaning - He will have to make a transition from his NICU vent to the PICU vent, which apparently can be rough for some babies. Then the goal will be to wean him down as quickly as possible as he tolerates, both sedation and vent settings. Once he gets to a certain setting on that vent they will trial him on the home vent. It is very rudimentary compared to the hospital vents, so he will need to improve significantly to get there.  It seems impossible, but they say it happens! 

Also- in regards to Antonio's many names and nicknames and their spelling. I mentioned that we decided that Tone has to be Tone and not Ton. We've spelled Toni with an i since he was born because it's technically the shorted version of AntonIo and in Spanish makes sense. But, we realized a long time ago that it was going to cause issues, so we decided that he'll be Toni until he's graduated from the hospital, then he'll be Tony. It's easier since all his crafts have the I at the end, that's how the nurses spell it, etc. And there's still Toñio and Toñito. Just figured I'd clear that up while I was explaining the rest of everything! 

Okay, I think that should be most of the info we'll have for some time other than how his procedure goes on Monday. We're going to try to get our lives pieced back together while he's really sedated next week if possible before we have to start training, so if we go MIA that's why! Thank you all for helping us to reach this point in our journey, we are hoping that it is finally a big step in the HOME direction.