Day Two

I think I was numb at this point. It was so hard to see Bash with a million tubes in him, just lying there, so fragile. I was worrying all the time, not just as a mom but as a nurse, and judging his care every step of the way. I questioned whether it would be safe to transfer him to Calgary, and we worried that we had little family there, and that if we stayed we would have so much family to support us in Saskatoon. I was also on edge with everything the PICU was doing to him - I had felt from the moment we got there that they were doing their best, but I knew the type of care he would receive at the Children's Hospital in Calgary was second to none, as this is my home base - I have worked in pediatrics there for two years. 

At 8am we suited up to check on Sebastian, he was on isolation to protect him from outside germs, so anyone coming in his room had to wear a gown, gloves, and mask. He was so puffy, his eyelids were bulging and his limbs were tight to touch - they had fluid overloaded him. At 9am the doctors rounded and they set a plan to stop dialysis as it was not needed any longer (hemoglobin - 68, and platelets - 42) were at good levels now. They notice now that they had not accounted for food and medicine intake overnight and fluid overloaded him by 1200ml. The plan for the day is to get his fluids down, as his oxygen demands had now gone way up - he needs 60% oxygen. At 1pm we met with the oncologist again - white count is still hovering around 400k. Sebastian may be able to transport in 1-2 weeks. The doctor requests permission from us to do a bone marrow and spinal fluid sample, send them to Calgary for testing, then wait for results to decide the treatment plan. Again this could be a few days as the courier doesn't operate over the holiday. We tell them again we would like to move him to Calgary as soon as possible.  I have started contacting my connections at the Children's hospital by this point, to help get the ball rolling and let them know we are serious about a transfer. At 2pm an ultrasound tech comes to verify central line placement and finds a blood clot in Bash's right leg. He's given blood thinners to help dissolve it and will need this treatment for the next 3 months.  Our oncologist now starts getting contacted by Calgary we think, as he pulls us aside and asks that we let them handle the 'footwork' and that there is a meeting planned for the following day with Sick kids in Toronto, and Calgary Children's to decide what will be best for Bash. At 4pm Nathan's family "drops off a few sandwiches" for dinner - 30+ cousins, aunts, and family show up! So much support and love, lots of tears, and many prayers to help us get through this.