The Voice of Reason

Yesterday after my good sleep I got to the hospital, Kourtney looked so unwell. Her temperature started to rise, heart started pounding and the temp didn't come down with Tylenol. It made me physically ill to see her in this shape. The reason why temperatures are scary is that Kourtney has a central line in. She is colonized with staph and therefore the line is as well. So if her temperature starts climbing over 39 then the line needs to come out and we are looking at a very sick child with no IV access.

Kourtney got some very special visitors that became a great distraction for me as well for Kourtney. Ryan and his Mom Paula from North Vancouver. Ryan and his wife, Ren, have a little girl with the same type of Eb as Kourtney. Ryan has spent countless hours learning and educating himself about EB. Kourtney and I felt very honoured that they would make the trek out to see our family.

After they left Kourtney's temp had not come down, she felt unwell. I felt that she should be taken into Children's under Dr. Courtemanche's watchful eye......then my cell phone rang.

It was Dr. Courtemanche.  He was fully aware of what was going on with Kourtney, and said at this point she is sick enough to be at the hospital but not sick enough to be at Children's. He reminded me at Children's the only "eyes" on Kourtney are the resident team called (CTU), and in Abbotsford we are constantly being monitored by real and experienced Pediatricians who know Kourtney very well. He told me if Kourtney's temp spiked to 39 then she would have to be taken to Children's. However at this point her temps have remained "low grade."He realized that Kourtney is very fragile at the moment but there would be nothing different they would be doing at Children's. He said he is around and to get a hold of him, if I needed any reassurance or advice. He also told me our GI doctor was away, so on Monday they will talk to him, as well Dr. Davis and Dr. Courtemanche are putting their heads together about everything as well. It is very nice to be able to leave this all in their capable hands.

I came home for another sleep......although my sleep is short lived these days, it feels nice to have a comfortable bed.

Kourtney's spirits were really down yesterday. I do think it is the Morphine, however I do know that once she is switched to oral pain medication, I will feel a bit better bringing her home. I want our family together again.