Long day, but worthwhile. I worked nights, Todd and Kourtney picked me up at 715 for our two hour trip into Children's. We were of course late for our 9 am endocrinology appointment. Dr. Stewart was able to give us some possible causes why Kourtney's growth has been stunted. Of course this means more bloodwork, and even an IV test to determine if Kourtney is a candidate for the growth hormone.
Kourtney was perky today, and seemed that those deep rooted coping skills have come to the surface once again. She made us laugh out loud today. It was fun to see her so much lighter today.
The visit to the psychologist brought a whole new perspective to her really low feelings. One of the biggest issues identified was her insomnia issues which will be handled by a psychiatrist. The psychologist will also be phoning the school to recommend how Kourtney's schedule can be more accommodating. The friendship issues will probably go on. Who really loved highschool?? We are so thankful that her caregiver Kimmy is such a positive role model in her life; committed to Kourtney and genuinely loves her.
There are so many things in life we have to be thankful for, however, there are times that the volcano needs to erupt and I think that is what happened last week. I think today we are back to just simmering. There are changes being made but at this point we are still really weighing our options.
There are 2 families I know for sure that are reading this blog, and I want to encourage them - you know who you are. I know that this blog is difficult for you to read, however, sometimes all the cards need to be laid out on the table. I don't think anyone can imagine the intensity living with EB can bring to a family as a whole, and at times it is OK to say, " I can't do this anymore." We have taught Kourtney that she doesn't have to suck it up all the time, and pretend that life is fine. That is why we have the blog, because it reminds people of the 24/7 of this disease and how it can become all consuming. I want to encourage you too; look after yourself, mentally, physically, make sure you see Dr. Bennett at Children's sooner than later because she is great! But most of all keep communicating with other families with EB. That was not a luxury we had and now there are 3 of us all within 1 hour of each other. Going through this journey together is invaluable! We can all be survivors together and support each other.
Tuesday, November 22, 2011
Sunday, November 20, 2011
The Downhill Spiral
There is not much more that I can say, however, we covet your prayers. Kourtney came unglued at school the other day and now we are reaping the repercussions with insomnia and more and more skin breakdown. We are seeking help from the psychologist at Children's. Todd and I are weary as we travel this road - alone and afraid that Kourtney has given up her will to live. School reinforces how different she is and how she is excluded from her peers. The youth group she attends reminds her that her friendships are limited and is very left out from any social interactions. For heavens sake she can't be on the music team because she did not know you had to try out for them. Her so called friends tell her to text her and when she does it's instant rejection; "I am busy". "We have to hang out soon"! Kourtney feels stupid for texting as not once has anyone allowed Kourtney "into their circle"! I can always look on the bright side and be thankful she is not part of the party group, however, when there has been no social interaction for months it becomes very difficult to take! We have been going to the same church for years, but every time we go somebody asks us about Kourtney's hands and then we are left explaining the disease (starts affecting our worship)! We miss our McKnight friends who gave us nothing but unconditional love, and Tammy who loved Kourtney as her own. This is why the psychologist feels that moving to Sask. would be beneficial to our family! Would the snow be whiter on the other side? I am not sure, however, the agony of watching little Kourtney in the depths of despair is not something we as parents could watch much longer! We have a trip to Children's planned for Nov. 22. We will be seeing endocrinology to see if there are any answers to Kourtneys stunted growth. As well, the psychologist is planning an intervention for Kourtney. We once again ask for prayers; we are depleted!
Tuesday, November 15, 2011
Changes are Coming!
It has been the longest 4 months for me and I don't know where to begin. I haven't blogged in a long time because there is so much going on that I even know how to express it all. Our lives have become overwhelming to say the least, and have to make some very big changes in order for our lives to continue spinning out of control.
I fell apart a couple of weeks ago, after one of the worst shifts I had at work. It was the most difficult test of endurance, I faced, and walked away feeling I had to suck it up and handle it. It wasn't until a few days later that one of our charge nurses phoned me at home, that I realized that I was in trouble and sought medical help. The week progressed and ended with a trip to children's hospital, which really made me take a big step back, and say "whoa things need to change". Please understand, that what I am about to say is not meant to be a guilt trip on anyone. I understand that people's lives are full, however, this road is very lonely, and for that changes need to be made.
Since about June, Kourtney's skin has broken down severely on her back , bilateral shoulders and upper arms, it is once again the nasty MRSA that is playing havoc with skin. Once again the "oldfaithful" dressings were not doing the job, and hi ho hi ho, it back to Children's Hospital WE GO and GO and GO. AS a result of this nasty infiltrating bug on her skin her hemoglobin took a huge plunge and started us on the hamster wheel that we became so accustomed to 3 years ago. The problem is however, that nobody (except DR Davis), seemed to care that this was going on. No matter how many times I complained, nothing was done. I took her to the dermatoligst, she ordered a 30 gram tube of antibiotic ointment, and sent us on her way. (the wounds are so big that this tube lasted us hmmm 3 dressing changes, thanks for your help.
In October, and 4th round of antibiotics I finally got Kourtney to page the plastic surgeon and talk to him herself, that is when we finally got some action-a new dressing- which amazingly enough it worked! However 5 weeks later we still have to beg, borrow, steal it from different deparments at the hospital, which I figure is annoying but watching your child in excruciating pain happens to trumpi the annoying part of this. (Abbotsford sells it for 10dollars a pop for a 2X2 peice- when you are trying to cover areas the size of North and South America on a map- dressing changes are as expensive as a new lulu lemon)
This back and forth to Children's is getting a bit too much, as now Kourtney is in high school, and missing a day is like missing a week of school, so on top of the 2 hour commute to children's ( both ways) dumpster diving for dressings, dressing changes, trying to manage my home, working, I have now spent countless evenings helping Kourtney with homework-especially social studies! However the butter cream icing on the cake,came last Friday.
Kourtney went in for an iron infusion. We left at 0830 got there at 1030, and were supposed to have an anesthesiologist start her IV. There was a trauma that just came so no one was available, for 1, 2, 3 and 4 hours. We had one nurse who came in and gave it not one but 3 tries and left Kourtney's arms, black, blue and very blistered. Why didn't I stop her, um well, I don't know! After a doctor came and poked her for the 4th time, Kourtney was done, and I made it very clear that there wasn't going to be a 5th. Frustrating. We had an appointment with the psychologist that same day, and asked some very pointed questions and felt Kourtney's care needed to be closer to home, she also questioned why we wouldn't move to Saskatchewan where her cousins were. Shaelyn already asks me everyday why we can't be closer to cousins and to tell you the truth I am beginning to wonder that myself.
Kourtney and I came home at 5, dressings were changed, dinner eaten at 730 and to bed we went bed. Wow what a great life we lead!
Before the iron fiasco we were planning on having a multidisciplinary meeting ( 7 doctors and 3 therapists showed up for a round table discussion on Kourtney's care).Speaks volumes however that her primary care provided was a no show because he was waiting for a phone call. The bottom line is that Kourtney's care needs to be closer to home, her iron infusions will be handled at the Abbotsford Hospital from now on and we will take her to a pediatrician on a regular basis that will monitor her. I am thinking there will be a lot of education for the staff, but if it saves 4 hour commutes, I think the trade off may be welcomed.
We still however need to do what is best for our family. Since our Saskatchewan visit in July our girls and myself for that matter, still have a very difficult time to being back in Abbotsford. Kourtney has few friends, who are swallowed up by extracurricular activites that Kourtney does not have a lot of energy for. Shaelyn's adjustment to her new school has been better then expected, however, play dates are non existance as the commute between Maple Ridge and Abbotsford is too much.
Todd enjoys his job, and enjoys leading worship at church. I still love my job and work with some amazing people that are truely the best friend :) I have ever met, however, it is very difficult to come home to my very sad, and truely in every sense of the word - lonely girls. So ya! What do we do with that. I do beleive that if God wants us to move that it will become increasingly clear, it would not be a huge benefit to Todd and myself socially, financially or physically ( the snow), but if our girls would reap the benefits of having 9 cousins, 3 aunts, 3 uncles and grandma and grandpa, the benefits would nee d to be weighed.
We start with small baby steps, the closer to home approach, we will go from there.
I fell apart a couple of weeks ago, after one of the worst shifts I had at work. It was the most difficult test of endurance, I faced, and walked away feeling I had to suck it up and handle it. It wasn't until a few days later that one of our charge nurses phoned me at home, that I realized that I was in trouble and sought medical help. The week progressed and ended with a trip to children's hospital, which really made me take a big step back, and say "whoa things need to change". Please understand, that what I am about to say is not meant to be a guilt trip on anyone. I understand that people's lives are full, however, this road is very lonely, and for that changes need to be made.
Since about June, Kourtney's skin has broken down severely on her back , bilateral shoulders and upper arms, it is once again the nasty MRSA that is playing havoc with skin. Once again the "oldfaithful" dressings were not doing the job, and hi ho hi ho, it back to Children's Hospital WE GO and GO and GO. AS a result of this nasty infiltrating bug on her skin her hemoglobin took a huge plunge and started us on the hamster wheel that we became so accustomed to 3 years ago. The problem is however, that nobody (except DR Davis), seemed to care that this was going on. No matter how many times I complained, nothing was done. I took her to the dermatoligst, she ordered a 30 gram tube of antibiotic ointment, and sent us on her way. (the wounds are so big that this tube lasted us hmmm 3 dressing changes, thanks for your help.
In October, and 4th round of antibiotics I finally got Kourtney to page the plastic surgeon and talk to him herself, that is when we finally got some action-a new dressing- which amazingly enough it worked! However 5 weeks later we still have to beg, borrow, steal it from different deparments at the hospital, which I figure is annoying but watching your child in excruciating pain happens to trumpi the annoying part of this. (Abbotsford sells it for 10dollars a pop for a 2X2 peice- when you are trying to cover areas the size of North and South America on a map- dressing changes are as expensive as a new lulu lemon)
This back and forth to Children's is getting a bit too much, as now Kourtney is in high school, and missing a day is like missing a week of school, so on top of the 2 hour commute to children's ( both ways) dumpster diving for dressings, dressing changes, trying to manage my home, working, I have now spent countless evenings helping Kourtney with homework-especially social studies! However the butter cream icing on the cake,came last Friday.
Kourtney went in for an iron infusion. We left at 0830 got there at 1030, and were supposed to have an anesthesiologist start her IV. There was a trauma that just came so no one was available, for 1, 2, 3 and 4 hours. We had one nurse who came in and gave it not one but 3 tries and left Kourtney's arms, black, blue and very blistered. Why didn't I stop her, um well, I don't know! After a doctor came and poked her for the 4th time, Kourtney was done, and I made it very clear that there wasn't going to be a 5th. Frustrating. We had an appointment with the psychologist that same day, and asked some very pointed questions and felt Kourtney's care needed to be closer to home, she also questioned why we wouldn't move to Saskatchewan where her cousins were. Shaelyn already asks me everyday why we can't be closer to cousins and to tell you the truth I am beginning to wonder that myself.
Kourtney and I came home at 5, dressings were changed, dinner eaten at 730 and to bed we went bed. Wow what a great life we lead!
Before the iron fiasco we were planning on having a multidisciplinary meeting ( 7 doctors and 3 therapists showed up for a round table discussion on Kourtney's care).Speaks volumes however that her primary care provided was a no show because he was waiting for a phone call. The bottom line is that Kourtney's care needs to be closer to home, her iron infusions will be handled at the Abbotsford Hospital from now on and we will take her to a pediatrician on a regular basis that will monitor her. I am thinking there will be a lot of education for the staff, but if it saves 4 hour commutes, I think the trade off may be welcomed.
We still however need to do what is best for our family. Since our Saskatchewan visit in July our girls and myself for that matter, still have a very difficult time to being back in Abbotsford. Kourtney has few friends, who are swallowed up by extracurricular activites that Kourtney does not have a lot of energy for. Shaelyn's adjustment to her new school has been better then expected, however, play dates are non existance as the commute between Maple Ridge and Abbotsford is too much.
Todd enjoys his job, and enjoys leading worship at church. I still love my job and work with some amazing people that are truely the best friend :) I have ever met, however, it is very difficult to come home to my very sad, and truely in every sense of the word - lonely girls. So ya! What do we do with that. I do beleive that if God wants us to move that it will become increasingly clear, it would not be a huge benefit to Todd and myself socially, financially or physically ( the snow), but if our girls would reap the benefits of having 9 cousins, 3 aunts, 3 uncles and grandma and grandpa, the benefits would nee d to be weighed.
We start with small baby steps, the closer to home approach, we will go from there.
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