Plans for 2013

Quick New Years Update!

My parents left on Saturday along with my brother and his family. We have all been walking around the house a little lost.  Kourtney has been especially down since their departure.  We had to have the discussion again about moving to Saskatchewan as Kourtney feels this would be a solution to a lot of her social issues. Unfortunatley, no matter how much Todd and I try to work this through in our minds, it is not feasible for many, many reasons. We both feel that we have a great life here and Abbotsford is where our home is and where we belong.  Enough said. The Kujawa's are staying put.

We have now have switched Kourtney's pain medication over.  She is sleeping much better and is able to stay up during the day. Her pain is now controlled and rarely does she feel the throbbing, aching pain that starts in her feet and works its way upwards.  Although everything seems to be on the upswing the only way this crisis can come to a close is to do bloodwork on her again this week. It will give us an idea where we are at with nutrition, (this looks promising as Kourtney has put on 8 pounds since November 24th) as well as some idea what her bone marrow is doing.  More than likely we are anticipating another transfusion as her body has been under duress for months. The doctors are working on a plan and the Occupational Therapist is going to figure some solutions to her foot pain as well.

We are making plans for our new normal;  some things to look forward to for the new year:

We are interviewing a nurse/nanny on Wednesday
We are anticipating returning Kourtney to school in the new semester
I am planning to return to my job and my coworkers that I absolutely love.

Have a Great New Year's Eve. It will be quiet around here as we have had non-stop guests and visitors  in our house and it's kind of nice to have our family (and Jenna) here.

DAY TO DAY......moment to moment

I have written 3 different blogs in the last 3 days. All saying 3 different things. Every day has been so different. Since Friday, we have been unable to manage Kourtney's pain. Her high's are high, her lows are gutwrenching difficult not only on Kourtney but for anyone who sees it occur. On Christmas Eve we made a switch to a medication that hopefully won't give her the high's and the low's, however it is all about weaning her off one and putting her on another with that comes withdrawal (which is a whole new type of pain).

Her skin looks better everyday, and the dressing changes are easy breezy and she has gained a whopping 7 pounds.  Its just this darn pain control that we can't figure out.

We did manage to have a great Christmas day celebration with the Lutzers, Kujawa's and the Finlays, unfortunately Kourtney has been unable to leave the house as we never know when the attacks will come as they have been so unpredictable.

We still have not been able to find a "new normal". Once again it's living day to day, moment to moment, knowing that God has a plan to do great things...............I just have to be patient.

And now she is itchy . . .

The fevers are gone, we are starting to understand her pain response, her skin healed up more than we have seen in over a year, and with the healing comes itch. Kourtney says that she would rather be itchy than in pain.  I agree, it is not as gut wrenching to watch her eyes roll back in her head when her back is rubbed, or head is scratched.
Today we got a visit from a doctor who specializes in chronic pain. I don't think we could have met anyone more kind, insightful and full of ideas in assisting Kourtney with her pain. I even got some ideas about the foot pain that has cursed her since July . . . other than Dr. Courtemanche I have never met someone who could give us such practical ideas.
We are so thankful for the gradual improvement in Kourtney, although the crisis is now over, there are still many decisions regarding pain control, education, and getting her into a daily routine. It is so difficult to be patient, as we live in a society that everything is done at the push of a button. It is difficult to be homebound during the Christmas season and want to be part of Christmas.I see and hear of all the Christmas parties, and gatherings that everyone is attending and feel sad that I can't be part of the celebration. But then I am reminded daily by mom and dad, that this "season" we are going through is the true meaning of Christmas. It is having Joy no matter what your circumstances, Joy even in our sufferings.

Hullabaloo

Lexi taking a nap under the Christmas tree.

After all the hullabaloo about the PICC line, it came out with just a gentle tug. However, we did go into Children's yesterday, and were completely surprised that the new bridge had decreased the traffic congestion that over that last 15 years to which we have become numb. The radiologist gave us hope that he could "dissect" the PICC line by first using numbing cream, but cautioned that if it caused too much pain Kourtney would have to come back get anaesthetized next week. This made Kourtney (and I) more anxious. In order for the numbing cream to work it had to stay on for the longest hour of our week. Kourtney was super anxious and cried when her arm was touched by the radiologist. Just as the freezing needle was going to placed the radiologist tugged on the line . . . and out it came. We all started giggling and laughing and Kourtney was in a state of shock that she didn't feel a thing. The radiologist said it made his week!  (The most amazing part was that the line wasn't secured very well, so the fact we got so much use out of it is a true miracle, and big kudos to Todd on securing during the dressing changes so it never pulled out.)

It was great to get out with Kourtney yesterday, but her pent up anxiety took a toll on her and she had more pain than usual. As I have stated before, Kourtney's road to recovery is going to be long.  It is very difficult for me to find the balance between how much we push Kourtney to get back into "living" again and how much rest she needs.  I have really changed my perspective from 4 years ago, as Kourtney is the one who now needs to decide what she can and can't do.  I have taken my expectations off which is the most difficult, but right, thing for a mom of a teenager to do. Kourtney's anticipatory pain, and emotional exhaustion play havoc with a body that is already diseased.  I can encourage her, do her dressings, and look after her the best way I know how.  Kourtney will need to decide if she wants to walk again, climb stairs and take charge of her educational needs. I simply can be her best cheerleader, but I can no longer play the game for her.

I have a feeling that our life is going to change dramatically as we once again need to find a new normal.

Today felt different . . .

Actually, we didn't go to Children's today, and the dressings were done this morning. We found out that Kourtney's PICC line removal is not straightforward.  We were told there was a two week wait to get them removed by a radiologist. Once again Dr. Courtemanche pleaded our case, it went straight to the heart of the guy who did Kourtney's dilatation. (Ahem for you faithful blog followers - I did retract my statement about him), he had "no" problem fitting Kourtney in for tomorrow.

Although yesterday was a disappointing day it was nice to see Kourtney get out the house, even it was a trip to the hospital. We thought we would be on call today to go to Children's for the PICC removal so we were going to do her dressings last night.  She resisted having her dressings done and just wanted to have a nap. When she woke up it was like the old Kourtney had returned, chatting with Grandma and Grandpa in her room decorated with white Christmas lights.

It continued today.  This was the first time in years that there weren't tears with the dressing change, no shearing pain, and no 2pm fever spike. She had a quiet day on the couch, cuddling with the kitty. I am hoping and praying that these are all good signs. With our security blanket (the PICC line) coming out tomorrow . . . we are praying that she has finally, finally turned the corner.