We went back to Cincinnati on Tuesday for a pulmonology visit to evaluate his lung function. Michael really struggled to get through the pulmonary function test until he was frustrated and crying and feeling like he was failing–it was obviously worse that the last one in September. The respiratory guy was very kind and gave him a minute and went and talked to Dr. B who came in and talked to Michael–love Dr. B. He talked to him for awhile and said it was up to him if he kept going or not but that it wasn’t meant to be so difficult for him and that he shouldn’t stress about it. Michael said he’d give it another go and he did and they did some milder versions, in the end they weren’t able to get any concrete numbers other than to show he is significantly worse than in September.

He was very concerned about the coming surgery given what he saw of Michael’s lung function. He was trying to phrase his word’s carefully so I had my mom take Michael out into the waiting room and he sat and talked with me for over an hour. He asked me if Dr. C had told us the risks to the surgery and I said we were made to understand that Michael was complicated and that it was going to be a difficult surgery and that there were high stakes, but nothing bluntly stated. I cannot tell you how calm, patient, and compassionate he was talking to me, giving me the blunt honesty but with utter graciousness. It was the hardest conversation I’ve had to date. He said that his concerns were not so much with the surgery itself, but with the days and weeks after it and that he wouldn’t really recommend the surgery being done without Michael being trached first. His reasons were multiple, but boiled downed to serious risks of pneumonia and lung complication without out–with it he will still have serious risks but without it he feels those risks double. Pain management–he feels he will likely be repeatedly intubated (tube down the throat, sedated) and then attempted to pull out, then pain meds make him breathe shallower and they will have to repeat, and etc. Michael will also be under less stress and more comfortable with a trach than with repeated intubation. We all agree that while a trach was the last thing we expected, that the reasoning is sound and worth doing.

The initial thinking was to go in the next week or so and have the trach placed, stay in the hospital 5 days for healing and training. Orthopedic surgeons are routinely concerned about things like trachs/feeding tubes, etc. where bacteria can colonize around the opening and then when they open up the back, there is a risk of the bacteria migrating to the back and settling around the rods. Dr. B (lung) talked to Dr. C (ortho) yesterday as well as Dr. R (ENT) and they all decided that a compromise was to complete the surgery with regular intubation and venting (something they’d do even if he had a trach) and then once his back was closed up they would put the trach in and take the breathing tube out and use the trach.

We had literally just sat down with Michael yesterday afternoon to explain what the doctor’s wanted to do when Dr. B called. Can I just say how impressed I am with him that he called me himself and not his coordinator? Anyway, he explained the above and I was very relieved that they would be doing it during surgery as he’ll be pretty drugged up for awhile anyway and it can heal up while he’s loopy and less stressed about it. He’ll most likely come home with the trach capped off until Dr. B feels he is completely out of the woods of needing it. Michael was, understandably, stressed and upset about this, it is very scary and in many ways he (and all of us) are at the end of our ropes in terms of stress and dealing with yet another thing. He does understand why they need to do it, though, and agreed that it was something we had to deal with and that he was glad he would be pretty loopy for awhile after the surgery.

We are all stretched thin emotionally, we keep thinking we can’t deal with one more thing and then, as I told my friend, “one more thing” walks up and slaps us in the face. I know that we are all strong, but we feel like glass that has crackled and only needs a tap to shatter. We won’t, but it is exhausting trying to hold it all together. We keep moving forward though, as that is the only thing we can do. I am so proud of my children, they are both strong and beautiful human beings and as I have told them since they were born–had I the chance to pick them out of all the millions of children in the world–I would have immediately picked each one of them.

What’s Next? We are heading down to Cincinnati on the 15th and 16th for some last minute checks, his hematologist wants a last check on his status, his GI wants a last check on his nutritional status, and Dr. B (lung) wants to do a 6 minute walk test to qualify him for portable oxygen. They’ll be doing a sleep oxygen test here at home to determine if he needs it during the night–he suspects that that status has changed from the fall and that he will need it.

The week after that is surgery week.