Snowed and Snow

The last 5 days Kourtney has been dealing with excruciating post-op pain. She took so much pain medication that it would snow a 400 pound man, but it didn't touch her pain.  The simple fix would have been to get her admitted with a IV pain pump running. However, it would have meant having to endure the dreaded ER and exposure to germs that could complicate her already complicated situation. Between myself and 2 of Kourtney's doctors we had a plan. One can be brave for so long and of course it all happens1hour before I have to leave for work.

For the last two days I had questioned if I should work on Tuesday night.  Kourt had been taking one medication that worked well but had some serious side effects. Once again we had to weigh the odds and decide what was the best for Kourtney. We cut back on the "too good to be true" pain medication and the pain went from a steady 6 to a 10. She had just returned from the Spaghetti Factory where she ate an unusual amount of food (another side effect) and the pain hit with a vengeance. I called Dr. C. and he told me to bring her in to Vancouver so he could take a look to see what was going on under the dressing. So that meant I had to do the call of shame and opt out of my shift for the night. As always these moments are always "prearranged" as my friend Angela was in charge; no explanation just her blessing a" family always comes first." The next few hours was straight out of a sitcom as Kourtney and I had to run the gauntlet of nurses and residents in the emergency department explaining why she was there.

First of all Todd had come home from a bike ride as Kourtney had her breakdown. In his helpful/not so helpful way he thought we were going to Abbotsford hospital. We all gave him the stink eye as he finally clued in that we were travelling to Vancouver in the first predicted snow fall of 2018. Staying calm is not always my forte when Todd takes a while to clue in.  I had to remind myself that the reason I felt comfortable driving into Vancouver was because he bought us a reliable van in the fall and he makes sure we have snow tires.. In all of this Shaelyn (the forgotten one) had to be picked up from an appointment. 

As Shaelyn can only do she walked out of her appointment carrying a puppy while a new found friend carried a second.  The pair  are up for adoption and of course Shaelyn had an agenda. "It's for Kourtney!"  Ughhh!  Shae knows anything baby melts my heart. Feeling vulnerable in the moment I almost brought it home.  Knowing I would be the most responsible person looking after her,  the reality of having a puppy sunk in.  So I said ask your father.  Of course that conversation did not go well. It was a nice distraction well it lasted. 

Our drive in was free of accidents but Kourtney's pain was intense. On arrival the ER was full of sick kids with puke buckets and coughs. It was straight from a scene from Elf as Kourtney looked ginormous compared to the other children there.  There was no room to maneuver Kourtney's wheelchair and not one person offered to move from the end.  I planted myself right next to the waterless hand soap dispensers.  Soon we had a nurse take us to a room. I felt sorry/not sorry for her for this poor over vigilant nurse. Blood pressures on Kourtney are difficult when one arm has a picc and the other one is painful, O2 sats and temps are never straight forward. As she went through the long list of Kourtney's medications the poor nurse told me she paged "plastics" and "she" would be there in 30 minutes. I said, "Whoa, we were supposed to meet up with Dr. C. who is a HE."  That poor little nurse with the Harry Potter glasses decided to disagree with me! 20 years a mom, 25 years a veteran nurse vs a nurse of 5 minutes.  Rookie mistake!!  I told her I would be happy to page him myself.  Those Harry Potter glasses became foggy as she was starting to sweat. She went and talked to her supervisor and I could hear the eye roll in her voice. (Anyone who works in health care knows what I am talking about). She chose to continue with her plan of care and brought in a poor resident who had no idea what to do with Kourtney- so she paged Dr. C. 

In 5 minutes the Good doctor comes in. He took action immediately and removed Kourtney"s dressing. Kourtney was a brave trooper as she did it without many pain medication on board. There was no crying or screaming just deep breathing. At one point she had to tell me to quit breathing so hard as I was having sympathy pain.  The wound was deep and raw but the skin graft en grafted. I actually think it's the first time I have seen the skin en graft. The poor resident was dry heaving as the dressing was being changed. The wound becomes a petrie dish of bacteria , the bandages are a great medium that create a pungent odour. Dr. C. and I both commented on the smell but we  know it's normal . There was nothing obvious that could be causing the pain except for the huge gaping wound, So he bandaged her up changed her pain medication. I was all about staying the night but Kourtney wanted to go home. . So we trekked back slowly through sleet and ice and returned home at 1 AM. Kourtney had a great night her pain level down to a 2.  We felt somewhat relieved and after what Kourtney went through I could conquer some nasty highway driving. Kourtney went to sleep quickly.

Unfortunately I didn't sleep, I was hit with a whole new level of insomnia. So many things swirling in my mind. So as soon as the morning caregiver showed up I went to bed, but there were appointments to be made, classes to cancel my never ending list continued to grow. As I finally started to rest Kourtney's pain increased again, I told her to look after it as I couldn't. She dealt with it on her own and her pain improved.

Tomorrow brings a whole new day and another trek into children's for a dressing change. This time she will get it done with sedation so Dr C can have a better look and it can be cleaned up a bit better.
I most likely be there sweating it out with her,  ultimately I am her mom first and there is an emotional attachment that is looming over my head. I am worried about the pain, the biopsy results, the healing, etc. Some days it is just too much for this mama too handle. Thankfully we will have a distraction as Beth and Brielle will join us. They are huge lights to us.

I will let you know how tomorrow goes.

Home!

I wanted to send a post out last night, however we didn't have wifi ( one of the few glitches in the new hospital. )All the time put into planning for this surgery worked in Kourtneys favour. We were greeted by many familiar faces and everyone was happy to see Kourtney. The surgery went smooth except at the beginning Kourtney started bleeding- enough for them to come and find me so I could sign the blood consent. For a few seconds I kind of felt we were straight out of a scene of a tv show sitting in the classy waiting room. But that only lasted a few seconds because  I knew she was in good hands. Turns out that being proactiveh with an iron infusion prior to her surgery gave her the reserve she needed so they didn't need to transfuse her.

Interestingly enough Dr C said encased in the tumour was bone fragments.  Kourtney has  been convinced thst there was bone sticking out. He said we will know for sure when the biopsy is back. He took a graft from her abdomen and said it was perfect. Because she got a nerve block she couldn't lift her hand last night which meant she had no pain. She says her hand already feels better than it did. Let's pray this confinues..

The highlight however was having friends and family visit. I was blessed to have Marijke as my personal caregiver ( no typo there- I needed her) , a former caregiver Meaghan who was on shift that day. Meaghan almost gave the recovery nurse a hearts track when she walked in and started touching Kourtney. ( when you know how to handle her she isn't quite as fragile as she sounds) After surgery  Shaelyn and caregiver Amber   and for the first time ever that I can remember extended family. Luke, Beth and Brielle made the trek out just to see Kourtney. Brielle charmed everyone and of course stole the show. Todd came this morning to drive us home.

It's done I am beyond exhausted . Perseverance pays off..
As I reflect on this experience I have become increasingly aware that Kourtney is a survivor not a victim. Although she lives with one of the most painful  diseases known to man she would never want anyone to see her like that. this is so difficult for so many people to realize. I know that on the outside my family is not the picture of perfection - we are better than that we are bulletproof.

When Todd came to pick Kourtney and I up just the sound of his voice made me so happy. I love him more than I ever have and don't ever take for granted what a great man he is. Shaelyn blows me away at the leadership roles she has taken on at her school. She isn't front and Center playing sports, in musicals but she helps the special needs kids. She may not graduate high school with honours
however she will leave graduate next year, with people skills that most adults don't have. They make proud. Thanks for your prayers we certainly felt Gods prescense yesterday.

The Kourt

My brother Meldon has long called Kourtney "The Kourt." I could not help but smile at the irony as we prepare for another surgery tomorrow. Kourtney  means " surrounded.” As the old saying goes, it takes a village to raise a child. We have been reminded of this over and over again in Kourtney's 20 years of life. But in the last month as we prepare for this surgery it resonates with me even more how surrounded we are as a family.

 To be honest we aren't quite sure exactly what will happen when the surgeon puts her under tomorrow. All we know is that there is a large area on her hand that is painful, unusual and not healing properly. Although her biopsy reports revealed that it is benign tissue, the skin does no look normal and is causing far more pain than usual. The plan will be to clean up the wound and  debride the unhealthy tissue, biopsy more tissue and then put a skin graft on. We completely trust Dr. C. He has looked after Kourtney since she was a baby. He is protective of her and even advocated for Kourtney to have her surgery at Children’s Hospital despite being an adult.  A brand new facility just opened in November 2017.  The post-op pain will be comparable to the pain she is having already. However, this is not as straight forward as it sounds. Kourtney is complicated.

This is what the last few weeks have been like as Kourtney prepared for this surgery.

With all the pain Kourtney is experiencing she has had to increase her pain medication. This does not require a trip to the doctor and then to a pharmacy. Recently family doctors have gotten their hands slapped for the over prescribing of prescription pain medications so it's not easy to obtain a prescription. We have a pain Doctor that comes to our home and always makes Kourtney and I feel better about what she is taking and never hesitates to help us. Kourtney is very cautious about what she takes as she doesn't like to feel tired and sleepy. It's a fine line but we are always thankful that he doesn't ever make her feel guilty for using the medication.

Our local GP is the quarterback for Kourtney. He organizes everything to make sure all requisitions, medication and blood work are reviewed and Kourtney is well cared for. We are thankful for such a supportive man. The one doctor though that goes beyond the call of duty is  is an interventional radiologist.  These doctors have revolutionized health care by doing procedures under X-ray. Because Kourtney is such a difficult IV start Dr. B. will start IV's, dilate her esophagus and for this upcoming procedure put in a pic line. A pic line is wire that goes into the heart. It makes it easier to have IV access and can stay in for an indefinite amount of time. Kourtney had the procedure done last week. What is usually a simple procedure turned into a tough 2 hour ordeal. Kourtney had a mild sedative at the beginning but was aware enough that she felt the pain of the freezing go in and knew that her nurse was a student of her grandpa Dave's. 

For tomorrow’s surgery Kourtney will not receive a general anaesthetic. It's so difficult to intubate her, so they will use conscious sedation. Although she won't remember anything it makes the surgery a bit more complicated as she will continue to feel pain and have reflexes. So in order to achieve good sedation she requires a skilled anaesthetist. She has had a designated one for her last few surgeries. This time she has agreed to help out again. However, it meant another trip into Vancouver. It worked out Todd could take her in. I am so thankful for him. Tomorrow Marijke will be joining us just another part of the village. 

Although there is so much to be thankful for, it resonates how complex Kourtney and her care is. These past few months have been so difficult as we have watched her suffer more than she ever has. They only way I can reconcile this grief is knowing and understanding that Kourtney still has life, a good life. She still is in school, enjoys outings and is so capable in making decisions regarding her care. We know Gods ways are perfect and we can only rest knowing that God controls this sweet little life. My role is to be there advocate and spend time with her. I have peace about tomorrow, it will be a long day but I look forward to. Spending time with her. I feel blessed to be her mama and thankful this journey has been made easier by the people who surround our family!! We will keep you updated.

 Pulling the plug . . . on bible college

I feel like it’s time to lay it all it all out on the table. These last few months have left us empty, worn out and not being able to know where or who to turn to. It’s the first time that I feel no one can help us get out of this.

I feel like I am hiding a secret. Life is not OK. It’s not OK. It’s not OK. Everyday I struggle to get out of bed because I don’t know what Plan B will be, or if there needs to be Plan C.   I have no more answers.   Everyone looks to me but I am out of resources. I am tired of begging people for help

I need to provide background information for you to fully understand what we have been through and the impact it has had, not just on Kourtney, but our entire family. We feel helpless and are having a difficult time knowing where to turn. We have a depressed 19 year old who desires independence and community, who has a mind to be stimulated and who needs friends who aren’t “employees”.

The latest problem began when our daughter turned 19.  Instead of steering our daughter towards a life on independence, our regional healthcare system reduced, Kourtney ‘s respite funding by almost 50%.  They basically told us that it was time for Kourtney to wear her “big girl . . . diaper”.   A diaper!  That was their solution to Kourtney’s night-time bathroom needs because it costs less than to have a caregiver around.  It was humiliating.  When we first applied for her adult funding we filled out a time task analysis; a day in the life of Kourtney.   It took hours for us to complete but it took just minutes for a “committee” to reject the respite hours we feel Kourtney needs.  We were told to appeal but I have chosen not to.  It is a waste of emotional energy and time, neither of which I have. It is my understanding that it’s a ploy by the healthcare region to start with minimal amount of grant money, and bank on families being too exhausted to.  It’s not right that we have to go through that after having 19 years of help and now have to beg for hours.  I wasn’t even allowed to talk to a social worker to help us navigate the system as they felt our family’s problems were psychological and far above what a social worker could do (not even kidding).

Which brings me to college. Kourtney ‘s desire was to attend bible school, live in a dorm and have some independence.  With her 19 birthday being in September we had no idea what her funding would look like (never did we think it would get cut back as much as it did).  So Kourtney enrolled for one class at CBC and had one caregiver (provided by us) that drove her to school and stayed with her at school.  We learned later that Kourtney had signed up for one of the most difficult 1st year courses. Despite the challenges of her course, she still loved it. But she didn’t get to know anyone; there was no community, no contacts. Basically she felt ignored her first semester. I raised concerns however unless I am lighting the place on fire my voice doesn’t get heard.

Second semester rolled around no plan was in place, not from a lack of trying. I knew that if I could only meet with the “right” people at the college it would have been an easy solution.  Between working, transitioning payroll forms, being a mom to Shaelyn, training new girls for Kourtney’s care, Kourtney having surgery a few days before Christmas, taking Kourtney to weekly appointments into Children’s Hospital, being worried about my husband who has been sick since October **(whole  other story) I had no time to tackle people to have a meeting with us. No one seemed interested or able to effectively help Kourtney transition. We did not have the funds anymore to send a caregiver with Kourtney.  This would have been the easiest solution. It took us a week into the new semester to schedule a meeting, with the academic support people. At this meeting we were told that Kourtney had a grant for transportation to and from school, money for a tutor and other miscellaneous expenses. Kourtney really wanted to go to bible school.

This all seemed too good to be true and it was.  Kourtney had already missed her first week of school, so she was looking forward to starting. However, we were told that she would have someone meet with her at school so they could turn the key for the archaic lift system to get Kourtney up and down the stairs.  Kourtney was so excited about being independent and called the school to make sure that someone would be there. On her first day she was told to stay home because nobody could walk 50 feet and take 3 minutes out of their day to turn the key for the elevator.  I was woken from my night shift slumber and I was very upset. I ended up calling the president of the school and that’s when I got fired up. We ended up having a meeting with him and the solution to the problem was to pay to have someone turn the key. Not for someone to be in class with her, but to just to turn the key.  I would have pulled Kourtney out at school at that moment, but Kourtney was so thrilled when she came to school in her electric wheelchair with no caregiver with her.  She was excited to meet people. She was confident that there would be enough people around to help her turn the key.

However the bumps continued, larger ones with more frequency.  The lift not working, the grant money only being a fraction of what was estimated.  Ultimately, it felt like we were trying to fit a square peg into a round hole.  It just wasn’t worth it anymore.

So, with sad hearts we made the decision to pull the plug on Kourtney’s education at Columbia Bible College. It was not an easy decision, but now that we’ve made it, we feel free. During this time Kourtney’s health has steadily been declining, so we will turn our focus on getting her better.  She will be getting an iron infusion and blood work done. We have a few getaway trips planned and she will now join us on our family Arizona holiday. Kourtney and I will start talking with department heads at our local university which is set up to more easily accommodate her needs.  It is heartbreaking that Kourtney cannot attend bible school.  

Now it’s time to concentrate my efforts on getting the help she needs. My next plan is to start rattling the chains to get Kourtney more respite help. The department has been restructured,  there is no contact person which I consider positive because I will go straight to the director of the program. If there is one thing I know I am capable of is fighting for her to make Kourtney’s voice heard. I refuse to go through the nit picky appeal process when her first application was not even looked at.

Just a P.S. We have some amazing supportive friends (MATT and MO, CHERYL AND LIONEL) and we are so excited to have family that moved here from Saskatchewan!

**Todd as well saw a specialist this week. He has been suffering with laryngitis that lasted over 3 weeks. Being a music teacher he was not very useful in the classroom. He will start a gradual return to work and start seeing a vocal coach to help him rehabilitate his voice. It’s a common problem with teachers.  I have been thankful that he has been home as he has been a huge support to all of us through this very difficult transition.

P.P.S.  Just got an invoice for an attendant to operate the key for the elevator.  Even included hours for when the class was held in the commuter lounge (ground level) for 3 days.  No attendant was needed!

So far 2016 has not eased up on our family. In January, Todd went to the Dr’s to have a minor procedure done to remove a stent left over from his kidney stone surgery in December. It could not be found because the slinky-like tube recoiled up towards his kidney. The only way it could be removed was through surgery. So once again Todd had to be put under to remove the stent.  Although it was a very quick procedure Todd does not do well with anesthetic. All in all, it was a relief that the kidney stones and the pain that came with it was completely gone.

Spring break was a huge milestone for our family. We went on our annual family vacation to Arizona without Kourtney. Now that Kourtney is in college she doesn’t have the same spring break as Todd and Shae so we made plans to leave Kourtney at home. She showed a lot of independence by booking caregivers and making her own plans during our time away. Although things didn’t quite go as planned we were very thankful for grandparents in Regina that dropped everything to come and spend time with Kourtney.  Little did we know that we needed them more than she did when we came home.

Our time in Arizona was relaxing. We hiked, shopped, swam, spent a lot of quality time with our family (Natalie and Kourtney) and enjoyed the unseasonably warm weather. The 2^nd last night we were there Shaelyn started complaining of a very sore stomach. Todd and I went out at 3am and bought medication to help with the pain but it didn’t let up. She begged us to take her to the hospital.  In all of our visits to the USA this was the first hospital visit ever (go figure). Shae does not complain of pain so we knew she was serious. After spending 6 hours in pain at the hospital the doctor refused to “image, scan or x-ray her” because he was sure she didn’t have appendicitis. He thought it was the stomach flu. She got some IV morphine that settled her but unfortunately that night the pain returned. We were leaving the next afternoon so instead of changing flights, car rentals, hotels etc. I drugged Shaelyn up with Todd’s kidney stone medication and boarded the plane. It was a long trip home for the poor girl. Thankfully Shaelyn’s friend, Emma, (who came with us) kept her in good spirits on the way home. Two hours after arriving home I took Shae to emergency in Abbotsford and waited another 6 hours only to hear the same words echoed, “its not appendicitis.”  Fortunately the Dr. was concerned about her pain and ordered an ultrasound for the next morning. After another dose of morphine Shae settled for the night.  The ultrasound confirmed appendicitis and Shae’s blood was showing more signs of infection. The surgeon did not waste anytime in booking an OR and Shae had her appendix removed. When she woke up after surgery she instantly felt better. Fortunately it was angry but had not ruptured! She recovered well and we became very aware that Shae has a very high pain tolerance after having 4 blood draws and 3 IV’s.

Easter we celebrated with my parents as well as Todd’s family. We thought we were could breathe again. We did not anticipate any foreseeable issues until a week later. Kourtney had a “routine” appointment to see Dr. Courtemanche.  Kourtney’s last skin biopsy was in February and we hadn’t heard the results. We thought  “no news was good news”.  Nothing prepared me for the next news. “Frank” (the cancerous growth on Kourtney’s hand) was now considered a “tumour” and was A LOT more aggressive then the first reports we had. I was not at the appointment so the details are sketchy but Kourtney was told surgery needed to be booked immediately and she would have to make a decision if she wanted to have extensive skin grafts done to her hand or have it  “amputated”. The news was so unexpected, nothing could prepare us for this.

But once again God’s sovereign plan came into play this week. I was really tormented by this news, as mentioned I did not go to the appointment so I did not know all the reasons behind this decision. My mind was flooded with ideas. I wanted to go see Dr. Courtemanche on my own but because he knows Kourtney and EB I decided I needed to trust him. Which is very difficult and almost unheard of in our overtaxed medical system.

 Kourtney   took matter into her own hands, and  made an appointment with our family Dr on her own.  They both came to a decision to do the skin grafts. It was one of the most freeing experience not having to make the calls for her.

The last 3 weeks we heard nothing.  Kourtney phoned the office but there was still no plan. It was very difficult to be still and wait, so I got busy around the house and did the biggest spring clean ever.  I tied up all the loose ends. (Then the dog started peeing blood, found out she has stones in her bladder, she will will be having surgery on Monday). So life continued on although there were anxiety attacks and fears had to be covered in prayer. My mind rested though in the fact that Dr. C was in charge.

Life continued on for Kourtney. She wrote her final exam on Thursday and on Friday she got the call that she will have surgery at Children’s on Wednesday. (isn’t God’s timing perfect as always).

 So far Kourtney has been a “textbook” for EB complications. However, the last 3.5 years thanks to an amazing group of local doctors and a miracle, Kourtney’s skin, her pain control and her quality of life  has exceeded expectations for this type of EB. Now we enter a whole new stage of EB. We are thankful for Dr. Courtemanche who has looked after two adult patients into their 50’s, managing their wounds and their cancer.  I want to chose to think positively and prayerfully. I have chosen not to research this or look at the stats. I don’t know what comes next as far as investigations of the cancer will go. All I know is that we will take this one minute, one hour, one day at a time. As well we have a very amazing team of ladies working with Kourtney this summer.  So thankful for the way God provides every need for our family.

So Monday is surgery for the dog and surgery for Kourtney on Wednesday April 27^th.  It will be the 4^th Kujawa surgery in 2016 and the year isn’t even half over yet. (yikes).

I will keep you all updated. Please send your love, prayers and thoughts to us this week.