My DAD

Being home isn't all that it is cracked up to be. It is very difficult trying to manage Kourtney and life. I find it difficult getting out of bed in the mornings and facing the day. I wake up with this nauseous feeling every morning and can't believe the roller coaster life has taken us on. The everyday events and complaints of the day make my head spin and all I want to do is sit in a corner with my hands over my head.(you probably have had days like that but just can't admit it). Mona (our caregiver) took over the bath yesterday, it was so freeing. We tag team the dressings so it cuts the time in half.


My dad came yesterday (early), today I don't feel as bad, Kourtney seems to have a bit more spunk. She just fell asleep in the recliner chair.

If I can give you a little glimpse into my life for a bit I will share it with you. I have been trying to get a hold of the MEDIHONEY and dressings for over a month. I finally received some samples through our pediatrician in Abbotsford. I brought them into Children's Hospital and sparingly used the supply with fantastic results. Everyone was impressed with these dressings, including one of the specialists that deals with infections. He told me that they were actually considering an IV honey for kids with cystic fibrosis. The dressings were ordered the day we came in (originally I asked for them Oct 8th). We waited for them. They were supposed to arrive November 10, and on Wednesday I got a call from the doctor's office saying that they would take 2-3 weeks to get them!! So far these dressings have been the only thing that has kept the infection at bay. So I emailed the supplier on Wednesday and had them shipped to me today. I had given the name of the supplier to the Dr but I the message didn't get to his receptionist. The only problem with me doing it is that I have to pay for it out my own pocket, and will probably have a fight on my hands for reimbursement, and like everything else these dressings are expensive. Yes I know I am venting. . .it kind of feels good.

Kourtney's fevers have subsided but she still has a lot of pain and no energy. I don't know if the blood transfusion helped or not. Her skin needs the honey dressings to help it to heal. So tomorrow will be the big dressing change.

While Kourtney was in the hospital, our much anticipated and talked about hot tub arrived. I love it so much. I feel so relaxed when I go in. Last night brought a smile to my face when I had to call my mother in law Bev and tell her that her husband was not lost. He was at our house sitting in our hot tub with a huge grin on his face. My dad was in there also, being splashed by Shaelyn.

Right now Kourtney's overall condition is a bit grim. I have to be honest. Her body is in a constant state of healing and repairing itself. In order for it to get better she needs the necessary proteins to heal, so keeping up is very difficult. It scares her to see her skin like it is and very difficult for Mona (caregiver) and myself to see it like this. We have gone back to a daily regime for arms and legs and are planning to keep the honey dressings on her back until the smell becomes overwhelming or until Thursday when we take her in to BCCH for another dressing change. Just pray the odour will subside. I do believe the smell can be avoided by using tea tree oil in her water.

My prayer is for Kourtney to be restored to the spunky 11 year old she can be. Watching a child in pain is very difficult, and although Kourtney has dealt with a lot of pain over the years, this is the worst it has ever been.

I know that those who are reading our interested. I certainly appreciate the interest and support we have received. Thanks for being there somewhere in the cyberworld for me!!!