This morning we left our house for Children's at 0830 for our 10 am appointment with the pshychologist. We did not arrive until 1030 as traffic was so bad and moving very slowly before the bridge. After 25 minutes with the the pshychologist we met up with pain management team and had Kourtney's pain meds adjusted . . . the anaethetist did Kourtney's bloodwork and put an IV in for a possible blood transfusion. Dr. Davis, the hematologist came to see us and told us what his plan for the day was. He told us he would come find us once we got the results from the blood test. So then we went to the dermatology clinic and met with our favourite dermatology nurse, Joanie. Dr. Davis met us there with the great news that although Kourtney's Hemoglobin is still low . . . it is the highest it has been since July of 2008, which means the iron is working. Since the IV was in, he wanted Kourtney to stay to have some more IV iron . . . which made sense. We had one more appointment left and that was with the cast clinic to get Kourtney's cast changed. I could not believe the difference in her her wrist. Before the cast went on a few weeks ago, Kourtney could not lay her right wrist flat with the palm of her hand down. She now has the ability to put her hand flat which will make it functional again. She had not been using it at all. A crowd seemed to gather around Kourtney in the casting clinic and everyone was quite excited about the progress that was made. Dr. Davis, came and found us again to tell us where to meet him. A lot has to be said for a doctor that will come find his patient in three different buildings of the hospital to relay information. Either that or he didn't have much to do that day.
We then went to the inpatient oncology infusion unit so that Kourtney could have her iron. I do believe we have been to all areas of the hospital now. It was just very strange being in the oncology unit. Kourtney was the only child with hair in that area. Unfortunately, the iron could not be given because the pharmacy did not think it was a safe dose for Kourtney to have. YADA YADA YADA . . . 2 hours later the infusion started. Once again Dr. Davis came and stayed in our room and talked to us for at least 1/2 hour and even did some nursing duties. Thank goodness for TV's, beds and recliners in those rooms. We had a nice relaxing afternoon. But by the end, Kourtney, Bev and I were too exhausted for our Ikea trip.
When we finally pulled into the driveway, we were then greeted by about 40 people in our house for pastorate. Kourtney and I are soooooo exhausted but yet have the insight that days like these will be few and far between. It was great having Grandma Bev with us also.
Although slow . . . Kourtney is starting to improve (she is not getting any worse). We accept the gradual improvement and although we just want her to be well, we are thankful that there are encouraging signs that she is getting better.
Kourtney is looking forward to her trip in May and is excited about meeting up with her friend Megan. I really think Kourtney needs this to be her goal to be well.
Tuesday, March 31, 2009
Monday, March 30, 2009
BIG DAY!!
Tomorrow will be a big day for Kourtney at the hospital. We will be seeing pshychologist, pain management, she will have blood work drawn with possible blood transfusion, a visit to the hematologist and will have her cast changed. We will attempt a a shopping trip to ikea for finishing decor for our basement. Todd will not come with us but we will be accompanied by Kourtney's biggest fan...her Grandma Bev. We will hopefully arrive home in time to host pastorate.....Phew....do I know how to stack all events into one day. Kourtney and I are both nervous about this trip in as hopefully we will get some answers to her chronic anemia issues.
I just finished my set of shifts. During my breaks this week I went to go visit a friend of mine in the hospital,words can not describe how refreshing my visits were with this amazing woman. She has faced her battle with cancer with courage and has overcome many obstacles despite the setbacks. She has an infection in her blood right now that requires IV therapy. In the 3 days I visited I am guessing she was poked at least over 27 times!! Not once did I hear her complain as she showed me the bruises and swelling on her arm. She radiated so much joy that it lifted my spirits. I don't think Feather you realize how much joy and Hope you gave to me!!!
I am always amazed how the small things in life are all consuming (paying the bills,losing the last 10 pounds, keeping the house tidy, keeping up with the Jones and the list goes on) but when one who has sat on the brink of death, it is amazing how the small things don't seem to matter anymore....the only thing that matters is that you have life today and the most important thing is to live for today.To be with someone like that is so refreshing.
I just finished my set of shifts. During my breaks this week I went to go visit a friend of mine in the hospital,words can not describe how refreshing my visits were with this amazing woman. She has faced her battle with cancer with courage and has overcome many obstacles despite the setbacks. She has an infection in her blood right now that requires IV therapy. In the 3 days I visited I am guessing she was poked at least over 27 times!! Not once did I hear her complain as she showed me the bruises and swelling on her arm. She radiated so much joy that it lifted my spirits. I don't think Feather you realize how much joy and Hope you gave to me!!!
I am always amazed how the small things in life are all consuming (paying the bills,losing the last 10 pounds, keeping the house tidy, keeping up with the Jones and the list goes on) but when one who has sat on the brink of death, it is amazing how the small things don't seem to matter anymore....the only thing that matters is that you have life today and the most important thing is to live for today.To be with someone like that is so refreshing.
Thursday, March 26, 2009
The Parking Lot
I sometimes wonder what our neighbors think about the revolving door of cars and activity at our house. Every 2nd Tuesday we host a pastorate at our house (a large, small group from our church). Our largest group has been 42 people, but we usually average 34, which means about 15 extra cars around our house. Back in September we had more than 50 people for a pool party! This morning when I left for work, we had Brittany's and Mona's car in our driveway and when I got home they had been replaced by Lorraine's and Emily's cars. Our staff enrollment has tripled since January. We joke that we can now have staff meetings and Christmas parties! Todd and I have amazing people working for us . . . but I do really wonder what the neighbors think when they see cars coming and going from our house at all hours of the day. Zazu takes full advantage of the revolving door of activity. People find it so hard not to let him in.
Next Tuesday (March 31st) will be another big day for us at the hospital. We will see many doctors that day including the hematologist. Once again Kourtney's hemoglobin has dropped down considerably. I am praying that she won't need a blood transfusion again. The iron infusions have worked well, but for some reason Kourtney has to be reassessed by the hematologist. I am very nervous about this appointment, because if Kourtney's hemoglobin cannot be maintained by iron infusions there may be larger issues with her bone marrow. This is called Anemia of Chronic disease; basically her bone marrow is tired and worn out and can't keep producing red blood cells. I am praying that this isn't the case.
We also found out yesterday, that the "bean" removed from Todd's foot was not the pesky piece of glass but a planters' wart. (I saw it and that thing had tentacles - like calamari). So . . . maybe the piece of glass will resurface in another 2 years. Dr. Courtemanche (Kourtney's plastic surgeon) told us he has a fool proof way of removing glass and he would remove it for Todd if it bothers him again. Poor guy.
So . . . we keep plugging along. Thanks to all the wonderful people in our lives who help us. Papa Dave picked Shae up from school and looked after the girls until Todd got home. Shae was so excited to have her Papa pick her up from school . . . he wasn't even late she said. (hmm . . . I wonder if someone has been late picking her up.) The spring time change really threw my inner clock off.
Saturday, March 21, 2009
The NEW IN NORMAL
Next week we will be adjusting once again into our normal routine as Todd is returning back to work after spring break. This has meant that I have gradually returned to do Kourtney's dressing changes so at least I know what is going on and can help out with them. As much as our routine is returning to normal again, Kourtney's care is the new normal and we are praying that Todd and I can organize ourselves well enough each week that her care is shared between the two of us.
The new normal for Kourtney is more "new" then normal. Although the storm is over the aftermath remains and the grieving for Kourtney continues. The dressing changes remain a two person job and have been streamlined a bit more so it is about 1 1/2 hour procedure. The MRSA remains active on her skin, but is controlled with the honey dressings (we have honey dressings now that will last us till next year). The joint contractures have increased significantly especially on her wrists to the point that her right wrist is in a cast to see if the joint can be corrected. She will wear the cast for a month which will be changed on a weekly basis to monitor the progress. Walking remains a laborious task for her due to sore knees and chronic anemia issues. Kourtney's sleep is disturbed due to pain despite adjusting her pain meds. It seems like for every good day Kourtney has there are 5 bad days.
Although Kourtney's overall health is generally poor, our family remains strong. Todd and I both feel a sense of unity in our relationship as a couple and also in meeting Kourtney's needs. Shaelyn has blossomed through the past couple of months and has returned to our happy independent 8 year old. Kourtney still struggles through her baths and really has a difficult time when she sees her skin in such rough shape. She grieves the loss of a normal life, and generally feels unwell. We allow her to vent her frustrations and generally that is what she needs to help her in her grieving process.
Yesterday we went to Children's to take off Kourtney's cast. The results were so amazing Dr Courtemanche was teary. Kourtney's wrist is straightening out beautifully with the cast. The cast was changed yesterday and she will wear the cast for the next couple of weeks. Dr. Courtemanche was very concerned for Kourtney. He really feels the MRSA is wearing her little body down. We have now put her on antibiotics again to give her tired body relief from the pain and the infection. We continue to covet your prayers for her and pray that the MRSA will disappear soon (the DNA of the MRSA has changed and now has become a bit more treatable with different antibiotics, which is great news.)
Todd has completed a lot of projects, including new carpet on the stairs and in our basement. Our little diamond in the rough of a house is transforming into the diamond that Todd and I dreamed it could be. There are still many reno's to do but we are way ahead of schedule. Todd loves doing reno's. He is definitely the happiest when he has his stud finder, nail gun and a tube of dap in his hands. He will trade these items in for his rake, pruning shears and topsoil as our yard will need attention as the signs of spring are quickly emerging. This weekend he will be leading the worship at our church for all 3 services. This is a huge responsibility for Todd and one that he does not take lightly. I am soooo proud of him!
I am feeling so much stronger and healthy emotionally. The biggest area that has improved is a decrease in anxiety. No longer am I faced with sleepless nights, heart palpitations, and dizziness. I am able to handle life so much better. I love my job and feel a sense of satisfaction when I finish each shift. I am always amazed at new life and love "babysitting" for the new mom's and dad's at night just so they can get some sleep. (I always tell them to take advantage of the most expensive babysitter they will ever have).
Our new normal . . . yes it's not without challenges, but we are embracing it and know that there will be great and mighty things that will continue to spring forth this year.
The new normal for Kourtney is more "new" then normal. Although the storm is over the aftermath remains and the grieving for Kourtney continues. The dressing changes remain a two person job and have been streamlined a bit more so it is about 1 1/2 hour procedure. The MRSA remains active on her skin, but is controlled with the honey dressings (we have honey dressings now that will last us till next year). The joint contractures have increased significantly especially on her wrists to the point that her right wrist is in a cast to see if the joint can be corrected. She will wear the cast for a month which will be changed on a weekly basis to monitor the progress. Walking remains a laborious task for her due to sore knees and chronic anemia issues. Kourtney's sleep is disturbed due to pain despite adjusting her pain meds. It seems like for every good day Kourtney has there are 5 bad days.
Although Kourtney's overall health is generally poor, our family remains strong. Todd and I both feel a sense of unity in our relationship as a couple and also in meeting Kourtney's needs. Shaelyn has blossomed through the past couple of months and has returned to our happy independent 8 year old. Kourtney still struggles through her baths and really has a difficult time when she sees her skin in such rough shape. She grieves the loss of a normal life, and generally feels unwell. We allow her to vent her frustrations and generally that is what she needs to help her in her grieving process.
Yesterday we went to Children's to take off Kourtney's cast. The results were so amazing Dr Courtemanche was teary. Kourtney's wrist is straightening out beautifully with the cast. The cast was changed yesterday and she will wear the cast for the next couple of weeks. Dr. Courtemanche was very concerned for Kourtney. He really feels the MRSA is wearing her little body down. We have now put her on antibiotics again to give her tired body relief from the pain and the infection. We continue to covet your prayers for her and pray that the MRSA will disappear soon (the DNA of the MRSA has changed and now has become a bit more treatable with different antibiotics, which is great news.)
Todd has completed a lot of projects, including new carpet on the stairs and in our basement. Our little diamond in the rough of a house is transforming into the diamond that Todd and I dreamed it could be. There are still many reno's to do but we are way ahead of schedule. Todd loves doing reno's. He is definitely the happiest when he has his stud finder, nail gun and a tube of dap in his hands. He will trade these items in for his rake, pruning shears and topsoil as our yard will need attention as the signs of spring are quickly emerging. This weekend he will be leading the worship at our church for all 3 services. This is a huge responsibility for Todd and one that he does not take lightly. I am soooo proud of him!
I am feeling so much stronger and healthy emotionally. The biggest area that has improved is a decrease in anxiety. No longer am I faced with sleepless nights, heart palpitations, and dizziness. I am able to handle life so much better. I love my job and feel a sense of satisfaction when I finish each shift. I am always amazed at new life and love "babysitting" for the new mom's and dad's at night just so they can get some sleep. (I always tell them to take advantage of the most expensive babysitter they will ever have).
Our new normal . . . yes it's not without challenges, but we are embracing it and know that there will be great and mighty things that will continue to spring forth this year.
Wednesday, March 18, 2009
Surgery
Almost two years ago I stepped on a piece of broken glass while walking bare foot around our pool. I went for X-rays and two different doctors tried in vain to remove it. So . . . the glass stayed put. I didn't really notice the glass until a week before our trip to Mexico in January when I felt a little lump on my heel. It became progressively more painful to the point I decided to have a local plastic surgeon give it another try. I went to the hospital yesterday morning and Janelle joined me in the operating room (she was at work and took her break to watch the operation). The freezing hurt soooooo bad as my heal was pricked about ten times! Then the cutting, poking, scraping, stretching began and carried on for a good 20 minutes. At the end of it all, a piece of scar tissue the size of a small bean was removed from my heel with the caution that he wasn't sure he got the glass. So off to Costco to get my prescription. I decided that since I had to do a fair bit of walking that I would take one of the motorized shopping carts the store provides. Desperately hoping not to see anyone I knew, I took the quiet side aisles. As I "crawled" through a main aisle I ran into our music pastor's wife. She got a good laugh out of it all and I got some shopping done, with some funny looks from other shoppers.
So now I sit and recover, taking pain medication, and antibiotics to prevent infection. I slept for 1 1/2 hour last night and felt nauseous this morning. I had to excuse myself twice during Kourtney's dressing change to "bomit". I finally went to bed for a few hours and am feeling a bit better.
I am now off to try out some new wheel chairs for Kourtney. She has had her old one since Kindergarten and is in need of a bigger, faster chair . . . so, off we go.
So now I sit and recover, taking pain medication, and antibiotics to prevent infection. I slept for 1 1/2 hour last night and felt nauseous this morning. I had to excuse myself twice during Kourtney's dressing change to "bomit". I finally went to bed for a few hours and am feeling a bit better.
I am now off to try out some new wheel chairs for Kourtney. She has had her old one since Kindergarten and is in need of a bigger, faster chair . . . so, off we go.
Monday, March 9, 2009
Shaelyn is 8 !! (check out her video)
Today Shaelyn celebrated her 8th birthday! Oddly enough, it has snowed on 5 of her 8 birthdays, today being no exception (-4 and blowing snow). She woke up early and found her present; a brand new bike. Her breakfast of choice was Tater tots, sliced kiwi and apple, and black current tea. Kourtney was feeling energetic enough to join us in a trip to Castle Fun Park for a bunch of arcade games and mini golf. On the way back Shaelyn ordered a bowl of chili from Tim Horton's. The weather cleared up nicely in the afternoon so Shaelyn was able to try out her new bike. She is now learning how to use hand brakes. We finished off with the day with dinner at Montana's where she wore the infamous moose antlers. She is having her party with her friends on Thursday; swimming at the wave pool and returning home for hot dogs and cup cakes.
Monday, March 2, 2009
KOURTNEY SLEPT!!
Kourtney ended up having a great sleep last night and off to school she went. The bus picked her up today and a taxi will bring her home. This will enable her to bring her wheelchair back and forth to school, so that Todd does not have to disassemble it. Thanks for your prayers. There was a lot of Peace last night.
Sunday, March 1, 2009
When it rains. . . it pours. . . then floods!!!
It is Janellle!! I got home from a night shift and Todd reported to me about the awful night he encountered with Kourtney. I had a busy night at work and although my heart once again felt heavy for my daughter, I was able to fall asleep with ease. (I do believe that is the beauty of antidepressants). During my sleep, I encountered a visit from Zazu, who happened to open my closed door "all by himself." (I found out later that Shaelyn had snuck into our room to get some candy and forgot to close the door.) I then heard Shaelyn yelling about a commotion in the kitchen. . . and I continued to snooze.
I was greeted at 3pm by my smiley, happy husband, and when questioned how the day went he said, "terrible." Not only did Kourtney continue to choke all day. . . our fridge's ice maker broke and flooded our entire kitchen and leaked downstairs into the garage. Todd took it all in stride . . .and we joked about the broken waters at home. I was so thankful that Dave and Bev had been here and Dave (Mr. Fix It ) came to the rescue and helped diagnose the source of the problem.
Todd's reaction to this whole situation was amusing. I do believe that grief and humour are so closely related and sometimes when life is dismal the emotions of grief can turn on the humour. Definitely what happened today.
Kourtney is a bit better. I do believe a lot of her choking issues are due to a postnasal drip. Todd bought her a Slurpee and it helped to loosen things up in the back of her throat. (It is always a guessing game.) Just pray for Sleep tonight . . . Kourtney needs to try and relax and that will help loosen up her esophagus and help her swallowing. Pray for Peace for her. Presently her emotions are so up and down and it is very difficult for us to know what is normal 11 year old behaviour and and what behaviour is compounded by her EB. She will be seeing the psychologist this week at the hospital. We are praying that she will feel free to talk openly about how she is feeling. Todd and I will see the hospital Chaplain. He has been an amazing sounding board for us and we feel he has great insight into the dynamics of having a chronically ill child. He has been able to bring us perspective and direction.
Pray . . . for a peaceful sleep tonight. We can all use it.
I was greeted at 3pm by my smiley, happy husband, and when questioned how the day went he said, "terrible." Not only did Kourtney continue to choke all day. . . our fridge's ice maker broke and flooded our entire kitchen and leaked downstairs into the garage. Todd took it all in stride . . .and we joked about the broken waters at home. I was so thankful that Dave and Bev had been here and Dave (Mr. Fix It ) came to the rescue and helped diagnose the source of the problem.
Todd's reaction to this whole situation was amusing. I do believe that grief and humour are so closely related and sometimes when life is dismal the emotions of grief can turn on the humour. Definitely what happened today.
Kourtney is a bit better. I do believe a lot of her choking issues are due to a postnasal drip. Todd bought her a Slurpee and it helped to loosen things up in the back of her throat. (It is always a guessing game.) Just pray for Sleep tonight . . . Kourtney needs to try and relax and that will help loosen up her esophagus and help her swallowing. Pray for Peace for her. Presently her emotions are so up and down and it is very difficult for us to know what is normal 11 year old behaviour and and what behaviour is compounded by her EB. She will be seeing the psychologist this week at the hospital. We are praying that she will feel free to talk openly about how she is feeling. Todd and I will see the hospital Chaplain. He has been an amazing sounding board for us and we feel he has great insight into the dynamics of having a chronically ill child. He has been able to bring us perspective and direction.
Pray . . . for a peaceful sleep tonight. We can all use it.
Watching the Sunrise
The sky is just beginning to lighten and I'm looking forward to heading to bed. No, this isn't Janelle finishing a night shift. It's Todd finishing his night shift. Kourtney had issues with her esophagus again last night and was up from 0200 - 0230 and then from 0400 - 0600. During those times she wasn't able to swallow her saliva. At 0200 I gave her some Ranitidine (reflux medication) and thought that would take care of things but she was up again a few hours later. I looked around for some Tums but couldn't find any until about 0500 when I thought about checking in the van. She seemed to settle after 0530 and finally fell asleep. Now it's my turn, until Shaelyn gets up; probably in about an hour or so.
It's 0900, the girls are up, and Kourtney is experiencing more difficulty swallowing. Hopefully things will loosen up as she starts moving around. Long day ahead.
It's 1300 and she's finally swallowing.
It's 0900, the girls are up, and Kourtney is experiencing more difficulty swallowing. Hopefully things will loosen up as she starts moving around. Long day ahead.
It's 1300 and she's finally swallowing.
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