Nathaniel is back to baseline.

He was discharged from Pediatric Intensive Care Unit to home a week ago Thursday. We reduced respiratory support from every four hours, to every six hours, to every eight hours, to every twelve hours. On Tuesday he no long needed oxygen when awake. By Thursday, he no longer needed oxygen when sleeping. Yesterday he was back to baseline. No oxygen requirement. No breathing treatments. No antibiotics. Little to no suctioning needed each day.

But he is far from back to normal. He lost two pounds in February. His arms seem thin when I help him dress. The jeans that were getting tight in January fit again.

He has little energy. The weather was beautiful this week and though we went outside, he would quickly seek a lap or chair to rest. His most playful day, when he plopped down on his tummy in the dirt and played with trucks, was bittersweet. I enjoyed watching him play in the sunshine. I was constantly aware of the proximity of his trach stoma to the soil and bacteria it holds.

During rounds this morning the team discussed how to adjust and increase feeds around respiratory treatments, coughing, and vomiting. I explained what I do at home. The Fellow commented almost under his breath, "That is a lot of work," and immediately I started to sob. In the middle of the hall, in the middle of rounds, in front of a team of professionals and strangers, I lost it. And I could not pull it back together.

I barely could whisper a response between breaths, "Yes, Nathaniel is a lot of work."

The team paused to give me time. All I could do was cry.

I crawled into bed at five thirty-three Monday morning and put my head on Rich's shoulder. It was the first time we had shared the bed that night. "Just coming to bed?" he asked, "How is he?"

"Yes. He's asleep. Thanks for the notes." I responded. Neither of us said more. For a few moments the only noise in the room was the hum of the air compressor for Nathaniel's heated humidity. I drifted into a light sleep, and Rich's deeper breathing resumed.

From under his pillow the alarm on Rich's cellphone went off.  Five forty-five am.  The shoulder I was using as a pillow moved, and then was gone.

I knew as I walked out of the Pediatric Intensive Care Unit in November that Nathaniel would recover from the acute illness requiring swift intervention. His body was already responding to the IV fluids. However, I also knew that my heart will never recover. There is no ointment or medicine or surgery that can fix how it breaks when I have to pin Nathaniel’s little body to an emergency room gurney and hear him plead with his voiceless screams and beg with his searching eyes for the procedures to stop.

Nathaniel climbed through the van door and scooted past his car seat to grab his water bottle. We had stopped at park near home after therapy; we were leaving for home. "Thirsty Buddy?" I asked. He nodded, opened the folded yellow straw top, and tipped the bottle up. A drop of water dripped down his chin. We have been working on drinking since February. I have bought countless cups and water bottles. Some with lids leak on the cup side. Some with no lids leak on the Nathaniel side. Some seem to fill his mouth quicker than he can swallow and the leaking comes from his lips. I had high hopes this new one would work. Nathaniel handed me his cup and crawled in his car seat. I wiped his chin, buckled him, handed back the cup, and prepared to leave. I had high hopes the first drip was an opps. Before the van was to the park entrance, I had to pull over. As he continued to drink, water continued to drip down his chin and into his stoma causing him to cough and needing suctioning.

After Nathaniel's Laryngotracheal Separation in February, our Cincinnati ENT told us that Nathaniel's new breathing stoma was big enough that we could stand across the room, throw the trach tube, and get it in. We all laughed. That is an impossibility of course, but we now know that with Nathaniel in the back seat, a six foot one inch lanky Daddy can get the tube in from the front seat.

A few people have asked me why Nathaniel's airway is safer - how did surgery provide that? Before we got home, Rich and I had started discussing what was different from previous accidents. There were multiple things working together.

Nathaniel pulled out his tracheostomy tube tonight. A first since airway surgery. The setting was close to what I have always imagined to be the worse possible. We were northbound on Interstate 44 returning to the St. Louis area from visiting our daughter and husband. The highway had just widened to three lanes. I was driving; our van was in the middle lane with semi-trucks on both sides of us. Everyone was traveling around seventy-five miles an hour. Rich was beside me in the front, trouble shooting a problem with Nathaniel's talker. We had just driven trough one of many hard rains. I heard velco and Nathaniel's breathing sounds changed.

Today was the sixteenth time in less than three years that I handed Nathaniel to an anesthesiologist for a surgery or medical procedure. That does not count illnesses and lab work. Despite the outward appearance of resiliency and well-being, the chronic need for medical intervention is taking a toll on Nathaniel's body. We are in Ohio for two days of appointments at Cincinnati Children's. Nathaniel was seen by four surgeons in the operating room this afternoon. As a side note, I really like it when doctors play well together and coordinate care; if handled differently, what was done today could have required four separate visits and four more handing overs to be sedated. Thank you Cincinnati Children's!

I came home from the hospital last night and noticed the two trachesotomy tubes sitting on my windowsill.  Both, one from two weeks ago and one from Friday night, are waiting to be cleaned and sterilized. Seeing them reminded me of the first time my younger brother came to visit us after Nathaniel came home. We keep two trachs, one the same size and one smaller sealed in bags after sterilization, near Nathaniel's bed. At the time of Clint's visit, one of the tubes was stored in a bio-hazard bag; it had probably last been sterilized at the hospital. Bio-hazard baggies are what the nurses use even though the item inside is going home intended to be reused. When talking about Nathaniel that night with my brother, I made a dismissive comment about the intensity of his care. "You have a bio-hazard bag hanging in your son's bedroom," Clint said with some strong emotion. "For crying out loud,  this is beyond medically complex. This is life and death."