Finally, A Plan

We had our care conference today and had a very good discussion with the surgeon, lung doctor, Mason's pediatrician, the hospital team, and the speech pathologist.

The lung doctor talked a lot about the unknowns. We don't know how much Mason's lungs have improved, we don't know how much they will improve, we don't know if they will improve, and we don't know exactly what the course of treatment should be. Mason continues to be "different" from other kids because of how his lungs came to have problems, not the type of problems his lungs have. He continues to march to his own drum because there aren't a lot of kids out there who survived the minimal amniotic fluid that he had while in the womb. So, we have to make our best guesses about treatment based on what they have learned from kids with other types of lung problems. What he does know is that Mason has "very significant" lung disease and will take a very long time to get better (if he does get better). When I asked what a "very long time" was to him, he mentioned years. He expects Mason will need oxygen for at least another year or so. While this is not fantastic news, it is really good to know so that we can set our expectations around it. We can expect ups and downs, but real change will take a lot longer.

The surgeon talked about the reasons for surgery, what happens in the surgery, and what to expect for complications (should they happen). Both he and the lung doctor were very clear about the outcome of the surgery: it will not make Mason's lungs better. It will however, help to keep him safe while we wait for his body to grow and his lungs hopefully get better with that growth. So, the burning question from folks is why do the surgery. What we have come to understand is that the potential for his lungs to get worse is very high; when he refluxes and aspirates, his lungs will get much worse. He needs the surgery to help prevent the potential for getting worse.

We also talked about what will happen after surgery. Each of the providers was pretty sure that it will take several months for Mason to return to baseline after surgery because of his lung condition. We are hopeful that he won't need to be in the hospital for too long, but regardless of where he is, he will have a higher oxygen need and not be able to eat by mouth for quite some time.

So, the bottom line is that everyone agrees that the surgery for reflux and a g-tube (feeding tube directly into the stomach) is the way to go. The surgeon proposed that we go 4-6 weeks of being "stable" off of steroids before doing the surgery. This will give his lungs the best chance for being as strong as they can be before the trauma of the surgery. If something worsens before then, we will move up our timeline. Which leads me to what are we doing now.....

We are changing Mason's anti-reflux medication which may help temporarily buy us some time until we get to the surgery. We are going to repeat the heart ultrasound to make sure that Mason's heart is still stable. And, we are going to move forward with his immunizations to keep him safe from all of the nasty stuff that could come his way. All of these things will be done before we go home to make sure that he responds well to them and doesn't have any bad reactions.

At the care conference, we also talked about some parameters/guidelines for Mason's oxygen needs to "qualify" for discharge and to try to prevent coming back in to the hospital. The pulmonologist assured us that it is no longer dangerous to give Mason more oxygen up to 2.5 liters/minute. When we left he NICU, our limit was 1 liter and he has been exceeding that regularly in the last month. We have been fearful that increasing beyond 1 liter was putting him at risk, but are encouraged to know that more oxygen is not going to be dangerous for his lungs anymore. So, we have a little more flexibility with what is safe at home. Our pediatrician was also given some more tools to help us should Mason's need for oxygen go up a little more.

All in all, it was a very productive care conference. We, and all of Mason's providers are more aware of the entire picture and how all the moving parts fit together. We are confident that he has a good team of doctors who care for him and are happy to work with us for the best possible outcome.