This is a continuation of my story...really Jack's story from our experience in the hospital from June 15th to June 19th. You can read the first half HERE.We pulled up to the ER entrance and the team of EMT's escorted us through the back hallways of the hospital: the hallways that are stark and empty, not the art-filled walls of the visitors hallways. We rode the patient elevator to the fifth floor: the pediatric impatient wing of CHaD. As we walked towards the entrance and under the CHaD banner above the door I choked back the tears. No. No. No. We were done. I thought. We aren't supposed to be back here. Not like this. We were done. When we arrived at CHaD Mark was there waiting in the room they had prepared for Jack on the pediatric floor, the nurse ushered us in and we moved Jack to the bed. Teams of nurses and Doctors came in, we rehashed the details of the night: explaining, speculating re-answering all the questions we'd been asked a dozen times already. It seemed that all that could be done (at least for the next 12 hours, until Jack received his next dose of antibiotic) was already done at our local ER, they had administered the antibiotic and had taken a sample of the fluid and sent it off to the lab. Jack didn't appear to be in as much pain and he had nursed, which were both good signs. The pediatric team decided to discontinue the children's tylenol so that if Jack did spike a fever again it wouldn't be masked by the medicine. The doctors informed us that right now the only thing they could do was wait for the culture results from the lab, which would determine what kind of infection they were dealing with and help them decided on a more effective antibiotic. The lab results they said, could take up to 48 hours. Jack still needed to be seen by the plastic surgery team, who rounded later in the morning. They suggested we settle in. We were there for the long haul. In some way I think both Mark and I thought we would be headed home that day. We thought: one of needs to sleep so we can drive back. We did that as best we could, Mark tried to sleep in the reclining chair, I curled up on the chair/cot and Jack slept quietly in the crib. Though surprised we had been taken so abruptly to CHaD, I was relieved that we were in the care of specialists who knew Jack's case history and would be more equipped to handle whatever happened. That relief pushed all the adrenaline from my body and complete exhaustion took over, I drifted off into a deep sleep. Just an hour after we had settled down the plastic surgery team came in. Mark and I jerked awake at the knock on the door, we fumbled through twisted sheets and blankets to stand up. The team of plastic surgeon residents speculated at Jack's case, finding it incredibly unusual that an infection would form so late post-operatively. Jack had been healing nicely for the past five weeks, his scar had completely closed and the dray scab had begun to fall off, revealing nice pink healthy scar tissue beneath. There was no indication of inflammation or infection at the incision, just the swollen areas above and below. They speculated out loud: possibly a drain to remove the fluid, maybe more surgery to open the area and flush it out. Mark and I listened. The word that they would possibly operate again felt crushing. No. We were done. Not this again. No. I nodded in indicating I understood, but everything inside me wanted to shake my head vigorously "no" and shout it too: NO! NOT AGAIN! They wouldn't make any decisions, not until Jack's surgeon, Dr. Mitchell Stotland came in on Monday. Of course. I thought. It's Sunday. He has the day off. He's home with his family, it's Father's Day. We were supposed to be home...

After they left I nursed Jack and he fell back asleep, but both Mark and I were wide awake and starving. "I need coffee. Like, all the coffee you can find, bring it here," I said to Mark. Jack received his antibiotic every 12 hours, so besides the nurse who came into check his vitals every few hours not much happened. The pediatric team rounded again later in the morning, just before lunch. They had little new information. Nothing was going to happen today. We had to wait until Monday for the word from our surgeon and the culture results.

Not the Father's Day I had planned for my husband.

Time seemed to stand still in the hospital, just like it had in the ambulance. There was a huge window in Jack's room and even though I knew the time of day, I couldn't tell you the day or the date. It all seemed so surreal. We marked time with nurse and doctors visits and cups of coffee. We wandered in an out of the room, restless and exhausted, relieved that Jack was sleeping but anxious that he might wake up in pain. I was able to step out for a brief moment during one of Jack's naps. I needed to get some fresh air. I rode the elevator down to the first floor and walked out the door with no particular intention. I wandered down a sidewalk that turned into a gravel foot path, at the end of the path was a playground: a small wooden swing set, set back into the woods a bit. Sophia would like this, I thought. She loves playgrounds. I pulled the swing towards me and sat down. I took my glasses off and set them on the swing next to me. The trees became a fuzzy blur. Without my glasses I can't see but two feet in front of me. When I took off my glasses everything around me drifted out of focus, becoming indistinguishable blobs of green and brown. It was the tipping point, as if somehow not seeing the world around me allowed everything in me to come rushing out. Up until that point I'd held in every complex and heavy emotion, even the tears that welled up when we entered the CHaD floor were brief, just a moistness in my eyes. I had to. There was no other option, what help was I to the nurses if I couldn't hold my son still while the inserted the IV? What help was I if I crumpled to the floor under the weight of it all? But alone, on the swing it all came rushing forward from it's restrained place way in the back of my heart and mind. I cried. Heaving, sobbing cries. I cried for Jack, for the pain he had been in, for the IV and the unknown and the confusion he probably felt. I cried for Sophia, two hours away, safe with my sister but still separate from us. I cried for the broken promise that we'd be home in the morning. I cried for my husband, for the fear I'd seen on his face for what he was going through, for the weight of it all that I knew he felt. For the missed Father's Day. And I cried for myself, for the sheer difficulty of it all. I sat there for a while. I don't know how long, but long enough to feel emptied of everything I'd held inside. When I felt that I was completely empty of all my emotion I made a few phone calls, updated family and then walked back to the entrance. Perhaps more exhausted than before, but feeling lighter after a release of emotion. Later in the afternoon Mark went to get lunch, I'd just changed Jack's diaper when there was a knock on the door. I glanced towards the drawn curtain and saw our surgeon, dressed in athletic shorts and a polo shirt. A surprised "hi" was all I could manage. He came right over to Jack: "How's my guy doing?" It was a relief to see him, he's probably one of the nicest doctors I've ever met. Though a bit quirky, he is incredibly caring. Throughout all of Jack's procedures he has been honest and gracious all at the same time. He had come in that afternoon just to check on Jack. He seemed just as surprised upon examining Jack's back as the plastic surgery resident team: this infection was unusual. He asked a few questions, the same ones that all the other doctors had asked. He said he'd see us on Monday and just before leaving told me to make sure I told Mark he was sorry his Father's Day would be spent in the hospital, under these circumstances. I knodded. As Sunday evening drew to a close I knew I needed to make a decision. A difficult one. Mark had arranged for us to have a room at David's House, a non-profit guest house for families of CHaD patients located on the Dartmouth-Hitchcock Campus just a short walk away. Both Mark and I needed sleep. Over the 24 hours we'd been awake we'd pieced together maybe 5 or 6 hours of sleep between the two of us. I had to decide if I was going to stay in the room with Jack or go with my husband to David's House. I talked to the nurses then to the social worker assigned to the pediatric floor, the reassured me that it was normal to feel guilty for leaving but that I needed to take care of myself. I knew I needed to sleep and from our experience staying the night in the hospital previously, I knew I would not sleep if I stayed. So I decided to go. I pumped a bottle for Jack, nursed him, snuggled him, put him down in the crib and kissed his sleepy face. He was going to be OK. I told myself. I had to frame the whole situation as if I was leaving him with the most capable babysitters on earth. I've left him overnight with my parents before and though they love him to bits, they wouldn't know what to do if something "happened" but the doctors and nurses would. As I left the room I whispered: "OK God, you said you were with us. Now be with Jack." We arrived at David's House, a place I can only describe as wonderful and possibly the most hospitable and inviting atmosphere into which I've ever set foot. I sank into the bed, my exhausted mind and body finally relaxed. I pushed worried thoughts out of my mind and fell asleep.

The next morning (Monday) we hurried to back to the hospital, walking swiftly across the parking lot at 5:30am. Though we had both showered we still wore the same clothes we'd had on when we left the house on Saturday night: our pajamas. Jack was sleeping when we arrived, he'd slept through the night, but not before he'd spiked a fever just after we had left. At the new fever the doctors ordered blood work, they had pricked him again and drawn blood. So something had "happened." In a way I was releived that I hadn't been there. I wasn't sure at that point I could have watched him go through the IV process again and keep it all together (little did I know that I would have to hold him on two more occasions while they found a vein and drew blood). We went into Jack's room and he started to wake, I nursed him and then we all ate breakfast together. By then Jack was no longer feverish and was mostly back to himself: he ate bananas for breakfast and played with his toys.

We spent the remainder of the day killing time, waiting. We saw our surgeon at 5:30pm, he said he was leaning towards inserting a drain since the preliminary culture results showed staph infection (we were still waiting to hear the "sensitivities" so they could determine a specific antibiotic to address the strain of staph). We would know more in the morning, but what they did know is that we would be in the hospital for at least another day (Tuesday) and perhaps longer (Wednesday). I made arrangements with my sister to pack up a bag of our things. My Dad met my husband at the half way point and that evening we were able to shower and change into clean clothes. Two and a half days in the same clothes, it was a welcome relief to finally have clean clothes.

When we arrived back at the hospital on Tuesday morning we were informed that the plastic surgery team and our doctor had decided to insert a drain that morning, which meant that Jack could not eat. He had slept through the night after I had nursed him on Monday night before leaving, but in order to be ready for the operation he had to have an empty stomach. We spent the whole morning distracting Jack as best we could. We were scheduled for anesthesia at 10am. But before that radiology came in to ultrasound the area again and determine where the drain would be inserted. Hungry and cranky, Jack was no longer in pain and attempted to crawl out from under the ultrasound wand. It was good to see that he was slowly getting back to himself. Not long after our nurse came in, "They want more blood work," she said with a sympathetic smile. "They need his white count." This time both Mark and I went into the procedure room, it was good to have him there. The nurses took their time looking for a vein, though it seemed just as difficult to do so as it was in the ER. They called up a nurse from the PICU (pediatric intensive care unit), it was clear she was experienced and was able to find a vein with one prick. It was a struggle to keep Jack still, they swaddled all of him but the arm they were using. His cries were piercing, but they didn't last long. Soon they had the blood they needed and we were done. It wasn't nearly as painful or drawn out as the IV insertion at the ER, but it wasn't any easier. Shortly after 10am a nurse from PainFree (CHaD's anesthesia program) escorted us from our room to PainFree. A place we've been several times before. We knew the drill. Hold Jack while they administer the gas, kiss him quickly after he goes limp and leave the room. As strange as it may seem it gets easier each time we've gone through it, or perhaps my trust level is higher because I know Jack will be OK when he comes out on the other side (or at least that is what I choose to believe).

Searching for all forms of distraction while waiting for anesthesia.

It took about an hour for them to insert the drain and after the proceedure we were reunited with Jack in same-day-surgery recovery, another place we are all too familiar with. I nursed him. Held him. Cradled him. Kissed his sweet forhead. He wimpered and moaned, confused and disoriented from the anesthesia.

The procedure had been successful, they had removed quite a bit of fluid and there was now a drain inserted under the skin, draining away additional fluid. I moved from the rocking chair where I sat with Jack in my arms to the bed. As Jack settle down we both drifted off into a deep sleep, Mark sitting quietly by our side. A short time later I woke, they were satisfied with Jack's recovery and were ready to move us back up to his room.

Recounting the story is taking longer than I thought. I suppose that condensing events from four days would take a long time. There are still a few more moments that I want to capture in writing. I'll finish the story soon. But before I draw this out further, for those of you who are new readers you should know that this story has a happy ending. Jack is fine. Despite the scare and infection he has recovered completely and is back to himself.

--Sarah

{Continued} June 15th: when fear became reality

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