Day Three

 Sebastian tolerated coming off of the dialysis machine really well. They changed his intubation to spontaneous overnight as he was fighting the machine to breathe on his own. So now the machine was only there for backup if he didn't take a breath. 

The plan today - wean him off the breathing tube and have him off of sedation. He started to open his eyes and respond to our voices and would give us a hand squeeze. I so badly wanted to hold him again. He started fighting the breathing tube really hard though, he was trying to cry but no sound came out - I hated this moment and felt he was uncomfortable and in pain. They told us not to touch him or talk and that he would settle down if left alone. That seemed so wrong to me, and it took every ounce of my being not to lash out. I wanted nothing more than to get him out of there and to wake up from this nightmare. Then they came to do an ultrasound of his leg again, he got very upset so the decision was made to put him back on sedation and keep him on the breathing tube for his bone marrow biopsy and spinal tap the next day, then wake him up and try to wean him off the breathing tube again. 

Bash also had blood work come back positive that morning for two different viruses (Coronavirus and Rhinovirus), and to top it off a bladder infection (Klebsiella)! So they started him on antibiotics. At 10am a PICC line is inserted into Bash's right arm to use to deliver medications and take blood samples from since the femoral central lines have the blood clot. 

Around 3pm the Oncologists from Toronto, Calgary, and Saskatoon, and the PICU doctors meet. All agree that Sebastian would have the best treatment in Calgary and he is scheduled for air ambulance transport. Their deciding decision was that he needed a Leukapheresis machine to remove the white blood cells from his blood, and this machine is only available in Calgary. His white blood cell count is still at 440k and before any chemotherapy can start his WBC count has to be less than 50k. 

Everything starts to happen really fast. At 7pm the transport team prepped Sebastian for the move. Only one parent is allowed to go with him so Nathan calls West Jet and books a flight to follow us. Family gathers to send us off. Our transport team consists of a PICU flight nurse, a Registered Nurse, and a Respiratory Therapist. We take an ambulance to the airport at approx. 8pm. They load us up into the plane and we head out to the runway at approx. 9pm and only a few minutes later, the brake test on our air ambulance fails and we need to change planes. At about 10pm we finally depart Saskatoon, arrive in Calgary at 10:30pm (time change - we gain an hour). Nathan arrives 15mins later. We deplane and are transported by ambulance to the Children's Hospital and are taken to the PICU. They decide that Leukapheresis will be our second option, and they would like to do whats called an Exchange Blood Transfusion first as they feel it will be more effective. The room is a buzz of activity and everything is explained to us really well, we already start to feel we are in the right place, and that the transfer was the right decision for Bash.

At 2am Nate and I check into a parent room at the hospital, we eat some delicious chicken soup that was waiting for us in a care package from a friend when we arrived, and then we finally get a decent sleep in a real bed.

Whew, that was a very long day.