Normalcy

Tuesday, put me over the edge...

When I first arrived at the hospital I spoke with the nurses that help with the burn baths, they said there was no way that they could help with Kourtney's bath. I was directed to go to another area, and a smiling nurse greeted me and said, "We have the room ready for you." Hmmm I thought this was too good to be true. As fate would have it . . . it was. I asked about the bath tub and she had no idea Kourtney would need a bath. She told me I could start taking Kourtney's dressings off and then they would page the doctors to come in and have a look. (Kourtney's wounds are so extensive that she needs to soak in a tub for at least 20 minutes to 1/2 hour before the dressings can come off). I felt this sensation come over me . . . I was so humiliated, overwhelmed and in disbelief. I was so numb, all I said was I am taking her home....and I left.

As the numbness began turning into this overwhelming feeling of rage I phoned the Dr's office and thanked them for screwing up my day. (I phoned back the next day and apologized). I called Todd and he tried to get to the bottom of it, but because I left I was the one who was in trouble. So I got labelled . . . as a burnt out mom that needs counselling. Like all you blog followers haven't figured that out yet. The plastic surgeon went so far as to call our Abbotsford Pediatrician. I am not sure what was said, but I gather it was some choice words. But to tell you the truth, I didn't care. I am and will always be the best advocate for my child and I will not let the medical professionals put Kourtney through more pain just because there isn't enough staff, or because she is being "fit in" to accommodate Dr's busy schedules. I was told by the anaesthetist (from the chronic pain management team) there was a lot of rearranging of schedules that happened to see Kourtney that day. (As maternity nurses know, anaesthetists are always just fitting people in.) I fiercely retaliated that one.

Anyways, I ended up going to Dr. Traverse today (the Abbotsford Pediatrician). He told me I cannot fall apart. He told me that I should go back to work. The one thing that has kept me from falling apart is my work. If there is one thing that has kept my head clear, it is my job. I love the people I work with and am really excited about going to the new hospital. I didn't think I was mentally capable of going back. He couldn't give me advice about Kourtney but feels that her care needs to be at Children's and I have to stay part of the team, and not do what I did yesterday. So I have to go back to Children's on Friday and speak with Dr Caurtemanche and try to figure out the best way the team can communicate and stay connected, so what happened on Tuesday doesn't happen ever again.

So Friday...I am going to go in to Vancouver all by myself, Kourtney is going to go to school for the afternoon and Shae has a pro-d day and I believe she will spend that day with Grandma (Bev, I think I asked you but if I didn't let me know). I may go spend some time downtown . . . and just clear my head all by myself . . . I need to find the strength to move on and accept this new stage of Kourtney's disease. Parents with special needs children are in a constant state of grieving the process (my dear friend Shirley understands this and reminds me that I need to smile during the storm). Kourtney's infection has left me stuck in the denial, and anger phase. I need to once again find it within myself to accept that this nasty disease is way beyond my control and I can only do so much to help her. At this point I am useless to her because I am tired and traumatized by what I see every day. I have to try to find normalcy again and get into my regular routines of exercise, going back to work and being a wife and a useful mom to Shaelyn (as we are speaking, I just burnt her breakfast). I have fallen apart, and now after talking with Dr. Traverse, I have to get back on track for Kourtney's sake especially. Blogging has been the best way to put my feelings out there and describe the pain and anguish that we go through. Janelle is moving on . . . my heart is still heavy for Kourtney but I have to remain strong. I have to tough suck it up.

Thanks for all your comments . . . really your encouraging words give me strength to get through every day.

Kourtney continues to be very weak, but her back and skin are healing up nicely with the Vaseline, tea tree oil, honey and daily baths. Her baths get better every day, and I am just so thankful that I have Mona. She has been my best advocate and can make Kourtney laugh even during the most stressful times (she witnessed the event on Tuesday and drove home for me).

Janelle is coming back and still praying that Kourtney will be on the road to recovery also.