Saved by the plastic surgeon (AGAIN!!!)

Last week I started making phone calls about Kourtney's anxiety issues. I phoned 3 Drs to see if they could prescribe meds for Kourtney or if they could get her in to see a psychiatrist. Everyone's hands were tied because all the Drs, especially at Children's, are sooo specialized that they don't feel comfortable ordering mood medication.

The past week Kourtney was very weepy. When I took her to Children's for a cast change she cried all the way in and all the way to the office. When the plastic surgeon saw her, Kourtney told him she was very depressed and began to cry. I told him about our quest over the week to get Kourtney some help. He wasn't around last week, otherwise I would have talked to him sooner. He told us to stay put and he would make some phone calls. 2 phone calls and 5 minutes later, we were sitting in the office of a pediatric psychiatrist. (I am always amazed how much pull Dr. C has.) The psychiatrist already knew of Kourtney and wanted to just try to get her anxiety under control. She then planned to look at the deeper issues next week at our regularly scheduled appointment. The biggest thing was getting Kourtney's sleep under control. So she changed her meds around. She asked if there was a history of psychiatric issues in the family. I told her about my hospital stay in December and how good I felt being on the antidepressant. I told her, I was sleeping better, my pulse beats at 50 beats a minute rather than 100, and I have noticed a decrease in perspiration. She told me that if a medication is effective for me she thinks it would be effective for Kourtney. End of appointment!!! That is all we needed and it took over a week to get it.

We then got pampered at the spa day at Children's Hospital and received some very cool gifts including mineral eye shadow, hair gel and shampoo. Shaelyn and Laura, my friend and coworker, came with us. It turned into a good visit.

Next week will be a busy week as we try to fit in many appointments before our Florida trip. I am already dreading the trips in.

The weather has been so lovely here. Todd and Shaelyn took the inaugural swim in our pool today. The two of them were grinning from ear to ear as they swam in the 73 degree water.

I understand that my openness about my depression may be uncomfortable for some people, but I feel I have to share it because Chronic Stress Disorder or severe depression is very misunderstood. I feel that in sharing my journey I can also help people recognize that there is light at the end of the tunnel and there are people out there that can help during the journey. I know for a fact that this has gone on for years. Most of the time I have been able to dig out of the tunnel myself but this time I could not get out. Since my breakdown I have been able to give advice to my friend going through breast cancer and also my friend that recently lost her husband. Most people just "give up" on people going through difficult times and are not willing to walk the path with them. I now know how to help my daughter and recognize that her stress is magnified with the pain of all the sores on her body.

I have two friends that have been very dedicated during my journey, Jeanne and Corrina. They have not been afraid to come along side of our family and help us out. They weren't afraid to feel the pain and they accepted me despite my despair. Thanks you two.

The other person that has impacted my is my cousin Leanne. When I first moved to Abbotsford 17 years ago, she was the only person I knew. She has always been there for me and my family and I have enjoyed watching her children grow up in to young missionaries that deeply desire to serve the Lord. The last few months she has walked with our family and has gone out of her way to make sure we have been taken care of. Her husband, Rick, has earned the nickname Tricky Ricky. He loves bugging Shaelyn and there isn't a time that a smile does not cross her face when he is around. She's even sitting with him at church tonight. We are so excited about their move to Abbotsford in July into their very "God provided" house.

I also have found joy in my job as a maternity nurse. Last night I cuddled a 10lb baby as his parents slept. Holding a newborn is comforting and reminds me how precious life is. I also have many good friends there and enjoy socializing with the girls.

We are starting to see the effects of the improved sleep and the antidepressants already on Kourtney. Today she cried a bit but was able to get out of it a bit easier.

ANXIETY

Since our trip in last Tuesday, Kourtney's anxiety has increased to the point she can't stop crying. On Saturday night we sat in Abbotsford Emerg for 3 hours and eventually talked to a crisis counsellor. She is taking Ativan to settle her down but it is snowing her so much that she finds it hard to get out of bed in the morning.

As difficult as it is to see her like this . . . it is actually Kourtney's brain trying to process all she has been through. We are hoping to see a pshychiatrist at Children's tomorrow (thanks to the pulling of strings of the plastic surgeon). Her skin is getting better daily but yet we are still stuggling with anxiety issues.

Todd and I both are working as a team in dealing with her. When I am weak, he is strong and vice versa. Tonight was a brutal night with the bedtime routine.

As silly as this sounds, I believe that this part of the grieving process is a step in the right direction to her recovery.

Pray for continued patience for our family.

Lifted UP

"I tell you, the tax collector went home accepted by God. But not the Pharisee. Everyone who lifts himself up will be brought down. And anyone who is brought down will be lifted up" Luke 18:14

This morning Shae decided she was going to read to me what she learned in Kid's Town this past week. She said "Michelle (one of her teacher's she admires) read this and I want to read it today. This verse seemed to consilidate how I was feeling this morning.

Yesterday was once again a long day at Children's Hospital. Kourtney looked absolutely gorgeous in her skinny jeans and all her new colorful clothoes. The dermatologist was thrilled to see her and was encouraged by her growth and development. She was also very encouraged that the MRSA had changed sensitivities and has been cleared.

We then saw the OT and Kourtney had another cast change. Her right wrist has dramaticatically gone from a flexor contracture of 45 degrees to a hyperextended wrist of 15 degrees. (once out of the cast it will render to a neutral position). A month of "serial casting" has saved a surgery that would have involved skin grafting.

Then Todd, Kourtney and myself met for a 1 1/2 hours with the pshychologist who gave us new techniques to" slay the bath dragon." The pshychologist asked Todd and I had if we had any phobias, mine was claustophobia (from being locked in our outhouse at the farm) and Todd's was broken glass (from getting the glass in his foot ). Kourtney has devoloped a bath phobia from all the pain she has endured over the years.Kourtney's brain has been conditioned to be phobic of her bath, therefore we have to recondition her to decrease her phobia. (she actually has no problem going in our hotub-go figure). So now we have come up with a very structured bath plan to help get Kourtney through her bath. This plan needs to be followed strictly by everyone so that the reconditioning process can happen.

We then saw the hematologist,who was also thrilled with the way Kourtney looked.

8 hour later....we were home (there was a "little" shoppingtrip thrown in also).

We were all feeling a sense of calm.....then we picked up Shae at Grandma Bev's and Papa Dave's house. From the time she entered the van she started to vent. She told us that Children's Hospital should be called Children's Horrible because she hates it when we go there. Nothing we said would calm her down, the more we talked the worse it got, she even had a screaming fit....which is not like her except when she is very tired.Kourtney and I had plans to watch American Idol when we got home but instead, I watched a movie with Shae and Todd and Kourtney got to watch it. Shae settled down very quickly and became my warm loveable child again. She needed to vent and get it out......and did she ever. I have learned that these bursts of anger are healthy, as long as they can be redirected. She needs to say what is bothering her instead of harbouring her feelings. Let me tell you her feelings went sailing last night.

So between fighting the bath dragon and setting to sail feelings, we have a lot of homework to do. The pshychologist explained to us that all of us are recovering from post traumatic stress disorder and it will take time to work on all of these things.Just like the verse Shaelyn read this we have been brought down but are being lifted up daily!

Skinny Jeans....

This past week was one of those weeks that I was back to doing normal mom things. Wednesday morning I did a dressing change with Mona, and came upstairs to find a very tired Shaelyn. I told her we could lay down together for a half an hour and then go to school. We ended up sleeping until 10 . . . so I called her in sick for the day and we spent the day together. We went out for lunch and went shopping for Disney World clothes. We came home from our shopping spree and I did Shae's hair and made it extremely curly. She chose one of her new outfits and was transformed from winter to spring in moments. She then went to choir, where she redid her hair ( she does not like her hair curly . . . I tell her to embrace the curl), then we went off to skipping. She skipped with a smile on her face the whole time and was very proud of her accomplishements. I loved the special time I got to spend with her and am thankful for our precious time together.

Then on Thursday, Kourtney had a cast change at Children's Hospital. The cast change is a 5 minute procedure and there were no other Doctors to see . . . so we decided that a shopping trip was in order. Kourtney has grown so much over the last few months that she could not fit into a lot of her clothes. Her one request for the shopping trip was skinny jeans. We did not have access to a wheelchair, so Kourtney sucked it up and walked around the mall. She got her request plus a few other goodies. Kourtney did not try the clothes on, we prayed that they would fit. Mona was the first one to put the skinny jeans on, Kourtney said she prayed, oh God, oh God, please let them fit. Well, they fit and they looked so cute on her.

It felt like a sense of accomplishement for me to spend quality time with both my girls and do special mom things with them. I embrace the ordinary after life had been spinning out of control for so many months. I also am thrilled that a pair of skinny jeans were found for Kourtney. Finding clothes for Kourtney is not an easy task. I believe that God provided that pair of skinny jeans for her and made them to fit. We don't take things like that for granted around our house.

We feel an overwhelming sense of Peace right now in our marriage, home and family. We pray that it continues and we will continue to have HOPE on our journey.

Thanks for all your love and support!!! We love getting comments.

DISAPPEARED . . .

The experts said this day would happen. They told us that no matter how hard you try....you can't get rid of it, but one day it will disappear. After 8 long, cruel, painful months, 2 blood transfusions, 25 nights in hospital, 40 trips to Children's Hospital . . . we have finally reached the day that it has disappeared. Clinically we have seen a huge improvement in her skin, but the swabs have now revealed that the MRSA is not lurking in Kourtney's wounds.

YAY!!! WE are rejoicing!!!

Janelle

Retrain the Brain . . .

This week the dressing changes have been a very traumatic experience for our whole family. Last Thursday, Kourtney screamed the house down. I handed over the reigns to Todd. Both of us were so upset by her behaviour that we needed a debriefing session with Todd' parents. I phoned up the psychologist, very distraught about the whole situation. She feels that during their sessions that Kourtney is making progress with owning her disease and making her own decisions about her care. Progress was not a word that I would have used to describe the behaviour that we were witnessing at home. So once again I had to take a step back and hand over the baths to Todd.

The most amazing part though is Kourtney's skin is looking the best it has now in over 7 months. Our caregivers have noticed the progress immensely. If anyone else were to look at her skin they would probably not be able to see the progress. Kourtney's skin is slowly returning to her normal blistered skin. What was happening over the last 7 months was Kourtney's skin would blister and erode due to the skin being more "friable" from the infection. Now her skin is blistering, but not "eroding" at the fast pace that is was before. The erosions were deep and painful, but now they are very superficial and itchy . . . So we have to be very vigilant with keeping the itchy areas moist with cortisone creams and moist dressings.

We have learned that the body's response to pain is triggered by nerve pathways to the brain. We also know that a pain response can also be triggered by bad experiences. For example, some people have a fear of dentists and doctors. In Kourtney's case, this last seven months, the dressing changes have been so traumatic that the pain, fear and anxiety are triggered by memory. She thinks, "It is going to hurt so I am scared to get in the bathtub." Now that there is so much improvement in her skin . . . her brain has to be retrained to tell her that the baths will not hurt as much now. This will not happen overnight as there is still much skepticism for all of us that we are at the end of a long dark tunnel. It will take a lot of time, energy and patience to get Kourtney over her anticipatory pain. She is indeed making a lot more decisions about her care, but still has not come even close to convincing us that she only needs a bath once a week.

We really want her to feel good for our trip in May to Florida so that she can enjoy the rides at Disney World and not feel the pain she has felt over the last little while. We have a month before we leave . . . so far the improvement over the last 3 weeks has been very encouraging.
We are looking forward to Easter and spending time with Todd's family and also my cousin Leanne and her family. This is the first Easter in the last couple of years that our house is not under construction. It will be a wonderful Easter!!