Preparations began early Monday morning and by 9 o’clock Ren was ready to head downstairs to undergo his surgery for his G-tube. Before we made our way to the last stop before the O.R., the medical staff drew blood from both of us since we would be sending not only a sample of Ren’s blood off for whole genome sequencing, but ours as well. This is a genetic test that will look at close to 100 mypothies that could be the cause of Ren’s disorder. When you start to learn about the countless conditions that could affect a human, it seems miraculous that any of us make it here in one piece. With the SMA tests out of the way and negative, it is increasingly more likely that Ren has some sort of myopathy, but the list is long and the rarity of his is now well into the rare category. As I have stated before, the silver lining is that myopathies include many variations that are far less lethal than SMA. In addition to drawing Ren’s blood while he was under for surgery, they also preformed a muscle biopsy in order to increase our odds of figuring out exactly what we are dealing with. This involves taking a small sample of muscle tissue that can be looked at under a microscope in order to look for certain conditions. We feel strongly that between the outstanding MMD test results, the biopsy, and the genome sequencing, we will eventually have some answers. In the mean time, getting home is still our short term goal.

The operation went well and just as he always does, Ren surprised everyone with his fighting spirit. We had been warned that intubating him for surgery could prove to be tricky, as he may struggle to get back off of the ventilator; we had heard numbers like 24-48 hours on a respirator depending on how he reacted, but Ren worked his way off in just 3 short hours. With the G-tube button in place and his determination to breathe without assistance, we are finally able to see his little face without any tubes going in or out. With everything going according to plan (actually better) we are now looking at a discharge plan. We had hoped that it would be this week but it is beginning to look more like next Tuesday at this point. Oddly enough, the delay is less about Ren and more about a catch-22 that we find ourselves in with insurance and in-home care. We can not be discharged until the in-home nursing is lined up, but our wonderful system allows insurance companies to deny things like continued care at home. We pay over $800 a month for coverage for the three of us through Devona’s job, but when you find yourself in a situation like this, suddenly the abandonment is shocking. There are social programs in place for someone like Ren, however, until he is out of the hospital and established at home, we can not even begin the procress of getting him coverage. We are working with palliative care, but right now everyone seems to be at loss for what our next move should be. It is insane to think that we could opt to stay in the hospital, running up bills far greater than in-home nursing, which insurance will cover, but getting home where expenses will be a fraction is not covered. I’m not here to complain about “the system,” but it certainly raises many questions. It has been a long couple of days and I just wanted to let everyone know that Ren is doing great and that his surgery went as well as we had hoped. I will continue update as things progress, and continue to be grateful for all of the support and interest in Ren.