A New Kind of Normal

Wow! I can't begin to describe how wonderful and refreshing our trip to Mexico was. It was the first time since our honeymoon (more than 12 years ago) that Janelle and I had ever been away together. We're already looking forward to our next vacation. Take a look at our photo album section for a few pictures.

We knew our vacation was finished when we found ourselves spending nearly and hour in an airport parking lot trying to use a borrowed lighter to heat up a key to unlock a frozen car door only to find out that the battery was dead. On the second separate attempt to jump start the car its alarm went off before finally starting. I then had to scrape the ice off the inside of the car windows as they were covered in a thick layer of frost. Home at last by 0545.

While we were gone we knew that the girls would be well taken care of, and they were. By about the fifth night Janelle and I concluded that the girls were probably having just as much fun as we were. My mom acted as the events coordinator, inviting friends over to play games and eat meals, even arranging field trips and play dates. Our caregivers did a fantastic job looking after Kourtney. We were proud of Kourtney for taking ownership in her care as she helped direct those who were caring for her.

For the past few months, the winds of change had been swirling around each of our lives. For Janelle, she knew she was reaching her breaking point after years of shouldering the responsibility for Kourtney's care. She knew something had to change, something big! She told me over and over again that she couldn't keep going; she was done, finished. She wanted to walk away from the decisions, the responsibility, the pain of watching Kourtney suffer knowing there was nothing more she could do. At the same time I was not content with who I was. I felt like a shell of a man; solid on the outside, but hollow on the inside. I knew I wasn't being the dad or husband God wanted me to be and was frustrated that I couldn't seem to get my act together. From the outside I looked like I had my life together, but on the inside I was a mess. The winds continued to gain speed and eventually built into the "perfect storm" over the Christmas break.

While it may have looked like our family was being torn apart and blown away by the storm, the view from the inside was quite different. While the storm raged on we were gracefully supported by many God-ordained appointments. Significant people emerged on the scene providing encouragement and insight at the exact moment we needed. Timely phone conversations with a pastor, a special nurse looking after Janelle, the hand-picked social worker who really understood our situation all reaffirmed that we were being carried in the hands of God. My life has taken on a whole new purpose and passion in the past month and for the first time feel prepared to lead my family. Exciting times are ahead!

Kourtney, Janelle and I spend the past 13 hours at Children's hospital as Kourtney had some more blood work done and received another dose of IV iron. We didn't get home until after 2000. Janelle was encouraged that Kourtney's hemoglobin count is higher than it has been in months and we are beginning to notice an improvement in her skin. We have seen her skin improve like this before only to have another infection take over and set us back to square one. Kourtney is off antibiotics now and we pray that the infections stay away. For each of the last two weeks, Kourtney has attended two or three days of school with the other days spent at Children's Hospital. She is now looking forward to spending the next month going to school full time as we try to manage her care at home. Since August we have put on over 2,500 kms on our vehicles traveling to Children's Hospital.

Shaelyn continues to enjoy life by playing with our adopted cat, Zazu, even after he ate the fish out of her fish bowl. She had a good snowball fight with the neighbor kids yesterday and has emerged as a confident banker in her Monopoly games with Grandma and Co. When we returned from our vacation, Janelle hopped into bed with Shaelyn. When Shaelyn woke up she looked at Janelle and said, half asleep, "Grandma, you don't have wrinkles any more." before realizing Grandma wasn't there any more.

Janelle is enjoying taking a hands off approach to Kourtney's care although Kourtney has rebuked Janelle for looking at her "like a nurse". Janelle went back for an orientation shift at work and is planning to make a gradual return to work over the next few weeks. Life is slowly returning to normal, a new kind of normal, and it feels good.

Dressing Change

Today, Todd, Kourtney, Mona and I went into Children's for a dressing change. Todd asked me to come along just as a "consultant" to view Kourtney's skin. I stayed out of the tub room while Kourtney was having her bath and came in while the dressings were being put on. All I can say . . . it was pure chaos in the tub room. I had a very pale, rattled husband and a sweaty, tearful, shaky daughter. There were at least 7 people in the hot humid room including 2 men who were trying to fix the broken hydraulics on the bath tub while Kourtney was in it. It couldn't be quickly fixed so Kourtney couldn't be fully immersed and her bandages could not be soaked off in the usual manner. This caused her a lot more pain than usual.

To make a long story short....Todd was so pale he was encouraged to get some fresh air. Mona ended up taking charge in the room and directed the nurses during Kourtney's dressing change. Kourtney needed me just to be her mom so I stayed with her. I was totally hands off. Wow did it feel good! Although there were different nurses today, they were familiar with Kourtney and did an excellent job. Todd and I were relieved to find out that they will be around next week to do the dressings.

Kourtney's skin is still infected with the MRSA. While we are away she will be put on another round of antibiotics, and when we get back we will start using the honey dressings again. We will also continue with weekly dressing changes at Children's Hospital after we get back so the nurses can start getting comfortable looking after her. Wow . . . I cannot believe that it is actually happening. 3 more sleeps until Mexico and then . . . 7 days alone with my husband.

Dave and Bev (my in laws) will be looking after Shaelyn during our time away. Mona and Lorraine will be taking care of Kourtney. Please pray for them also.

Todd here. I often co-write/edit the blog with Janelle, so this is me. Tonight, as Janelle was getting Kourtney ready for bed the two of them were laughing their heads off. I don't know what they were laughing at (probably me, or boys), but I didn't need to know. They were just having fun together. I have seen first hand the change in their relationship as Janelle is free to see Kourtney for the beautiful girl she is. Tonight Shaelyn has decided to spend the night on Kourntey's floor. She made a little bed for herself consisting of a bunch of blankets . . . very cute. Shaelyn is also enjoying spending more time with Janelle, especially while I am doing Kourtney's baths and dressing changes in the evenings. I am taking some time off work, maybe until spring break, to get some new routines established around home that will make things operate more smoothly. The Kujawas are definitely moving forward and are becoming a stronger family through it all.

Hospital Day....

Today we went to Children's Hospital. Kourtney saw the psychologist and then the physiotherapist. Good news . . . although her back is still very painful the physiotherapist is convinced her stooped gait can be corrected!! She gave Kourtney exercises to help her stretch and develop her core muscle strength.

Thursday, Kourtney and Todd will go back to Children's Hospital to do a dressing change. This will be a final training session for the nurses before we leave. So far, the same nurses have been around for Kourtney's dressing changes. We are praying the same ones will be there next week also. Mona will be present during those dressing changes also. She has a very good handle on how to do them. What a team that has been developed!!!!

Going off to bed, my heart feels lighter then it has in months, even years. This type of team approach has been needed for years. I am quite happy not to be making all the decisions about Kourtney's care. It is very liberating to have other people in place that can look after Kourtney. She is being left in very capable hands when Todd and I leave for Mexico.

She's back . . .

Yesterday (Sunday), I heard something that was music to my ears. Doors slamming, things falling on the floor, and two little girls aruging about their territory. Kourtney decided she wanted to have her own room back after sharing with Shaelyn for a few months. Shaelyn thought that Kourtney's moving out was a great idea, so the big move began. Much to my dismay, Shaelyn decided to mark her territory by placing a sign on her door, "no 11 year old girls allowed." Kourtney retaliated by making her sign, "no stinky7 year olds allowed." I haven't seen this kind of behaviour in so long, that is really was music to my ears (a screechy violin kind of music). I haven't seen Kourtney so spunky and full of life for a long time.

Today was the "best day of my life" according to Kourtney. It was her first day attending her middle school in Abbotsford with her friends. Last June we were told by the principal and support teacher at this middle school that Kourtney should not attend the school. Construction at the school had shut down too many rooms , there were no bathroom facilities for her, and the concrete dust was overwhelming. The school district could not come up with a workable plan for Kourtney despite our efforts to keep Kourtney in Abbotsford. During the last week of June, Todd made the decision to enroll her in the Cyberschool program at his school in Maple Ridge. This devastated Kourtney and myself as Kourtney had just come off her best school year ever. We worked very hard to have the right people in place for her, and it was a very successful grade 5 year. To have that all stripped away was very difficult for all of us to accept, especially Kourtney. She had so many special friends at that school and they knew the real funny, vivacious Kourtney, not the crippled Kourtney (as she describes it).

In November, we were told that the construction at the middle school was ahead of schedule and would be over in January 2009. We started the process of getting Kourtney back into her middle school, but felt overwhelmed with the looming struggle to get the services she had in place last year. I had no energy to fight this so Todd and I both resigned ourselves to the fact that the best thing to do was to leave Kourtney in the Cyberschool. But, over Christmas the despair Kourtney had was unbearable to watch as a mom. She got stood up by a friend, and overheard too many phone conversations with my family members. She said she had nothing to live for anymore. Todd ended up calling a school board trustee, whom we happened to talk to at church in the fall. She got the ball rolling for us. Todd had a meeting last Thursday . . . and Kourtney started back to her middle school today. Tammy, her teacher's aide from last year was once again assigned to Kourtney, even though some union rules had to be bent.

There was nothing better then walking into the school at lunch time and seeing Kourtney in her recliner chair with 10 friends sitting around and talking with her. Kourtney described today as the best day of her life. Tonight she is headed to youth group with a friend from church. She will have her electric wheelchair with her so that she can keep up with the kids. Our next project when we get back form our holiday will be getting a wheelchair accessible van.

Although her skin continues to be a huge issue, Todd is feeling confident in his dressing skills and in looking after her. Mona also has a good handle on Kourtney's skin and plays a huge roll in helping Kourtney. Todd and I have totally switched rolls. I am now free to spend more time with Shaelyn, and to just be Kourtney's mom. We are looking forward to our getaway. We have never been away together alone. It will be so different for us to make the physcial break from Kourtney. Knowing that she is happier now with her school will give her a reason to continue to fight this disease, and having Todd and I rested and relaxed as a couple will definetely help us in the next months as we continue to face this disease with courage, and not to be held hostage to it as we have for so many years.

It's all about Janelle. . . really, it is.

Hi . . . the blog is back. I feel that in keeping things real I need to be honest about the last 2 weeks and why you haven’t read any new updates.

Over the last 4 months we have watched Kourtney suffer as her body has been taken over by infection after infection. Kourtney’s once manageable condition has become basically unmanageable. The pain she endures is endless and never leaves in spite of increasing her pain meds. Antibiotics help with the pain but as soon as they run their course, the infection returns and the pain increases.

Kourtney and I have not been ourselves since the infamous “bath incident” at Children’s Hospital on August 26, 2008. As some of you may know Kourtney received medication against my advice. We were reassured it would make her relax in a bathtub, despite my reservations about it. Kourtney ended up hallucinating with the combination of medications, and in a desperate attempt to sedate her, the doctor in charge used an entonox mask on her. Kourtney fought so hard that she blistered her back, bottom, and hips. The doctor showed absolutely no remorse, and felt she was doing the best thing for Kourtney. The MRSA infection set in to these open areas and although the wounds heal, the MRSA keeps breaking down the skin. The nurses were so traumatized by these events that they refer to it the worst day of their lives. Doctors have sent us home from the hospital saying they don’t know what else they can do to help.

I have known since November that I was reaching my breaking point. The stress I’ve been under for the past 11 years cannot be described but the events of the past 4 months have put me over the top. The anguish I face each day as I see Kourtney stooped over in pain, as I try to put dressings on her raw skin, as I watch the blood drip off her open wounds is too much. She was so ill in November that we stood by her bedside and told Kourtney to just close her eyes and go to sleep. I have wanted to walk away for years; to end the pain and suffering, but have never been able to leave. Until . . . this Christmas.

Simmering beneath the surface throughout all of this has been a growing rift between myself and my family in Saskatchewan. In the fall, my mom and I had a blowout, and I said things that I should have not said. Apologies were meaningless and forgiveness was just a word. Keeping Kourtney alive was my only goal. I had no time for Todd or Shaelyn. I especially had no emotional energy to sort out my family issues. I knew my emotional state was incredibly fragile and I needed professional help. I was starting to get help, but over Christmas my family decided to get involved and pointed out to me what I already knew . . . I needed mental help. I begged my family to leave me alone as I knew I was walking a very fine emotional line. They persisted in taking matters into their own hands and pushed me over the edge. There was no love, no understanding, no compassion, only a pointing finger.

The events that followed have humbled me beyond what I can imagine. Todd and his family embraced me despite the ways I have treated them in the past. They have been around to see Kourtney’s declining physical state, and have felt the same despair that I have had. I became very suicidal. Todd ended up setting up an appointment with a psychiatrist who admitted me into the psych ward at the hospital in Abbotsford. She could see the hurt and depression in my eyes and knew I couldn’t take any more. I had spent 11 years looking after Kourtney’s needs and had neglected to look after my own. I needed a break from telephones, internet, dressing changes, and family. I was so sleep deprived that I needed some rest. I was started on an antidepressant to help deal with my chronic stress. I had been told that a psychiatrist was for crazy people in a normal world or normal people in a crazy world.

I spent the next 12 days in the hospital. I spent a lot of time reflecting on life; trying to accept that Kourtney may not recover, struggling with guilt, anger, and blame. I was not allowed to be discharged until there was a plan in place whereby I was not going to be involved in Kourtney’s 2 hour dressing changes. Todd and I had to have a vacation booked to go away for a week. It is time for me to be Kourtney’s MOM for once and not her NURSE. The patients I met in the psych ward were so accepting and the nurses agreed that most people’s pride would not allow them to walk into a psych facility. One particularly vocal guy proudly introduced me to a group of students nurses saying, “She works at the hospital up on the fourth floor!” I smiled and told them, “It happens to the best of us.”

So, over the holidays, Todd took on the huge responsibility of looking after Kourtney and her needs. He also came to the conclusion that Kourtney’s skin will not heal until the MRSA goes away. Everyone, including the plastic surgeon has been very impressed with his dressing skills. He even managed to get Kourtney back into her middle school in Abbotsford with the help of our school board trustee. This has brought much joy to Kourtney as she will begin on Monday.

Todd and I . . . are going to Mexico in a week. The medical staff at Children’s Hospital are arranging dressing changes, with our dear Mona overseeing things at the hospital. We have taken Kourtney to the hospital a few times now for dressing changes so the nurses are becoming comfortable with the care she requires. We will maximize our respite hours so that Kourtney will have 24/7 care. We feel that the only way we can face this journey is if Todd and I remain strong and remove ourselves from it for awhile. Kourtney needs to know that other people are capable of looking after her, and that the only way we can continue to look after is by taking a break.

We are preparing Kourtney for this and she feels positive that she can direct her own care. For the first time I feel that Kourtney and I are no longer prisoners to this disease. We want her to have freedom and not to be held hostage to this disease. For too many years we have tried to avoid the blisters, but we have come to realize that not even Todd or I can prevent the blistering and infections. I don’t even know the word to describe how it feels to let go and accept that there is nothing we can do to remove Kourtney’s pain.

So as we rebuild and move forward in 2009 I would like to acknowledge those who have supported us through this difficult time. Todd’s family, Mona, Tammy, my cousins, my wise uncle, all the doctors and nurses and ARHCC (Janelle’s work) and BCCH, the staff at Alouette Elementary (Todd & Kourtney’s school), the Eastside Pastorate @ Northview for meals and visits, all those who worked “outside the box” to get Kourtney back to school in Abbotsford, and my fellow patients from the psych ward. With a start to the year like this, I don't know how we'll top it.

Maybe you can find out more juicy details after I write my book, "New Year's in the Psych Ward"