Reherniation Round Two

Sam's diaphragm patch has failed again. I am beyond disappointed. I expected that he would reherniate once. He was missing pretty much his whole left diaphragm and that first repair last February was really about seeing if he could survive. He did survive and he healed and came home. But we pretty much knew that such a large patch wouldn't be able to hold long enough for his left diaphragm to generate and take over.

So he had his repair in October and somehow, I convinced myself that was it. He got a fancy double patch in an eight-hour surgery and he bounced back quickly. In the three months since then, he started rolling and sitting and eating and he came off oxygen. I let myself believe our life was normal again. I tried to let go of my feeling of waiting for the other shoe to drop.

But there actually IS another shoe. As much as I want to make like that past year didn't happen and all is well now, my vigilance around Samuel is warranted and useful. Last week, I noticed he was a little fussier than usual. Then a lot fussier. He was eating less, acting hungry but then pulling off the bottle several times and taking half of what he usually would. He was constipated again. I noticed just a little bit of worker breathing at the base of his throat. His cheeks were red. So I was left to debate with myself... teething? the start of a cold? trouble digesting his solids? a hole in his diaphragm?

We always have to consider an abnormal cause for Sam's normal baby symptoms. As much as I wanted to believe that it was something innocuous, things felt "off" to me. I called Respiratory Clinic and we made a plan. Friday morning we headed in to Children's Hospital for a chest xray and then to see our Respirologist. Dr. Bjornson said that the xray looked "suspicious" and the Radiologist agreed and we set about waiting for Surgery to weigh in. She said there was something showing at the bottom of the left lung, maybe a bit of pneumonia if not a bit of bowel. Is it crazy to pray that your child has pneumonia? Heading home with some oral antibiotics sounded pretty awesome compared to another diaphragm surgery. 

Samuel busied himself in the exam room by pulling the paper from the exam table into a swarm around himself that he could rip, bunch up, and occasionally taste.

In the four hours that it took for Surgery to come see us, I convinced myself that Samuel had something normal they were missing. My top pick was an ear infection and Dr. Bjornson kindly checked his ears and throat for me. Because really, an ear infection would totally explain something suspicious on his chest xray. Sigh. Denial is a powerful thing.

By the time the Surgery resident arrived, I was exhausted and punchy. He explained that it was a certain reherniation of the diaphragm and told me the plan for Samuel to come in for surgery on Monday. I felt bratty about getting a resident when I wanted our amazing Dr. Mary Brindle - really just me clinging to my quickly evaporating denial. But then Dr. Sigalet arrived to give me the same story and it's tough to discredit a senior surgeon with his superdude reputation.

A friend of mine said it must have felt like someone sucked the air out of the room and, yea, that was exactly it. After a big boo-hoo, Sam and I headed home with a plan to help his constipation and keep him hydrated and strong over the weekend. He is eating pretty well and being his sweet self, although a lot more committed to cuddles. I have made a schedule for child care and am doing lots of laundry and some cooking today. On Monday, we will get a call with the specifics but surgery should be early this week and our hospital stay will be at least ten days.

The surgery they are performing this time is called an autologous lattisimus dorsi muscle flap repair. They will take a muscle from his back and pull it around to make him a diaphragm. This is a more complicated procedure with a longer surgery and there will be more hands on deck. Plastic Surgery will be called in to help isolate the muscle and ensure that it is not devascularized during repositioning. The hope is that the lattisimus dorsi muscle will function as a diaphragm since it comes with its very own blood flow and nerve supply. Sam's own muscle should grow with him so that his chances of further reherniation will be much less than with a patch.

Dr. Sigalet commented that we are just starting to see babies like Samuel survive so the technology to help them thrive is still catching up. It reminded me of the miracle that is our Sam, that he has grown enough to reherniate twice when this time last year I was on bedrest and expecting him to die. That he is off oxygen and physically so much stronger bodes well for the surgery and recovery. I am pushing my fears to the bottom of the pile where they can't get in the way of what needs to be done to make my baby and my family well again.