Still waiting...

Sunday was a bit of a rough day for Samuel but he started to settle out by evening and has been stable today. The plan over the weekend was to go back to reducing all stimulation in Samuel's world. As it was explained by his doctors, any kind of excitement causes our blood vessels to clench and this is too hard on Samuel who already has such severe pulmonary hypertension. So we went back to heavy sedation and the "no talk, no touch" rule. They worked on adjusting his medications so that he has no responses at all. When he must be handled for assessments or suctioning, he is given extra sedation and sometimes also a paralytic. His body needs to have nothing to do but deal with the infection and get strong. The ventilator and his various medications do all the work.

This is tough as his mama. The only thing I have to feel connected to him are his little finger squeezes and the sweet facial expressions he makes from time to time. For now, there is no more holding hands, no more singing and reading, no more talking to him as he tries to open his eyes. I know it is what Samuel needs right now so it's okay. Sometimes the helplessness I feel makes my heart ache. Sometimes it makes me a bit nutty and I go looking for little things to "do," like obsessively making sure the door stays closed when people are coming in and out of his room. But it is okay.

The lovely Auntie Jenny stopped by on her way through Calgary the other day and took me for a cafeteria slushie. It is no Coke Slurpee - have not had much chance to feed that addiction of late - but I appreciate the hospital's 100% juice slurpee-esque efforts. She said, "how are you doing this?!" and I said honestly, "I don't have a choice." If it were my choice, my baby would be in my arms and I would be changing his diaper and feeding him and smooching him up. Samuel has a different start in life. But he is still here, my strong, surprising, light-filled Samuel.

Being in the Intensive Care Unit at the Children's Hospital is full of its own lessons. As sick as Samuel is, he is not the sickest child in the ICU. There is a beautiful blonde five and a half year old girl in the next room and last week she was diagnosed with stage IV cancer. His neighbour before that was a little child who died the night after Samuel arrived; Chris and I felt the spirits all around that family and the next morning, the room was empty. The child on the other side of Samuel was brought yesterday by STARS Air Ambulance and I tried to imagine how terrifying that would have been for his mum. This is a place filled with extremely ill children and extremely worried parents. I have widened my prayers for Samuel to include all of these children and families. Suffering is not selective.

I think about the medical team here, these people who have chosen to work in what is arguably the most intense place in the whole hospital. It is a special kind of person who has the technical expertise to deal with all of these machines and medications and also the humanity to deal with such stressed out families and sick children. Many of the patients are under heavy sedation, just like Samuel, and I think of the compassion involved in remembering that there is a little person inside each still, silent body.

Each time I come into Samuel's room, I am aware of the little things the nurses do to make him comfortable - using a soft rolled blanket to prop up his tiny swollen feet or tucking his stuffie under his arm as he sleeps. In addition to caring for him, they offer their care to us. They ask how I am, if they can get me anything. They answer our questions and are comfort in those moments when sadness and fear overwhelms. Each day when I leave, I ask them to love him up a little extra while I'm gone. As nervous as I was to leave after our ten days in the NICU, we have now had ten days in the PICU and have found our angels here as well.

Samuel had a very stable night last night and was stable all day today. The plan to keep him heavily sedated seems to be working. Today he tried to open his eyes just a little and gave me a sleepy grin. His nurse and I delighted over this for a moment and she pointed out the little pink lines in his breathing patterns on the respirator; these were the breaths he was initiating on his own. My Samuel was taking his own breaths. It was so beautiful and yet I knew he shouldn't be working against the ventilator. More sedation. Rest, sweet baby.

The only hiccup now in sending Samuel to surgery is the staphylococcus infection that showed up in his blood cultures. His doctor explained that the risk of sepsis is high because of the many lines that patients like Samuel have in their body; staph grows naturally on our skin and these lines provide a route for the infection to sneak into the bloodstream. If the infection is not cleared from this first round of antibiotics, the next level of treatment will involve removing all of Samuel's lines so that they can be sterilized and re-started.

Another blood culture was drawn tonight at 8 p.m. and we need to wait at least 24 hours - maybe 48 - to know if it is clear. I am hoping so hard for nothing to grow in that culture, for us to find out that his little body is infection-free and strong and that the doctors will consider him ready to go to surgery.

I am also hoping for the strength to know how to balance this hospital experience with the home life that my big boys still need. I asked Zachary today how he was doing with everything and he told me, "Well, sometimes I am sad because Samuel is sick and sometimes I am angry but I don't know why and I am also happy because Nana and Boppa are here and then I am sad some more. Everything is all just kind of mixed up right now." My wise six-year-old Zachy. That pretty much sums it all up.