MRP

As of today the biopsy results aren't back. The emotions are running high as this surgery has thrown us a huge curveball with the amount of pain Kourtney has been having. It came to a point last week when we had to start wrapping our heads around the idea that there may have to be another operation if this bewildering pain continued. Although the preliminary results of the biopsy showed no cancer, Dr. C. was still not convinced.  The results will determine the next phase. So many things are running through my brain. Finally, on Sunday our family doctor returned from vacation and took charge of the situation and became the MRP (Most Responsible Person - a medical term used in the hospital when a patient is admitted in hospital - usually a doctor who orders medications, procedures and consults.

It may seem like I am over involved; a micromanager or enabler. To be honest since we have had our funding increased I have done my best to back off. I haven't done a dressing change in months!  According to Kourtney I am not fast enough. Kourtney also doesn't like it when I get her dressed.  She often tells me, "How do you dress yourself when you can't dress me?"  To be honest it doesn't bother me. I am happy to back off. I think it's healthy and an important transition to being an adult. However, these last few months of arranging, organizing doctors, and figuring out the right pain meds it may not seem like I have backed off. Just to be clear I don't need to be needed. 

Last week we adjusted Kourtney's meds and did a dressing change with sedation.  I thought the pain was under control. I decided to work on Friday and my 12 hour shift went on swimmingly, without any word from Kourtney about her pain. I felt relieved. It turned out not all was well. Kourtney's pain wasn't settling AND I was told that Kourtney's pain medication was running low. So why was I just finding about this now? Friday night. When doctors aren't on call and turn off their pagers and cell phones for the weekend. (This medication can not be called in by a doctor. The physician has to hand write it out on a triplicate form, can't be faxed etc). After a gentle tongue lashing to her MRP of the day, Todd,  I could not dwell on it but moved to Plan B.

After several attempts at contacting doctors, I banked on the fact that Dr. C., being a workaholic, would still have his pager on.  Of course he was happy to help, however, it meant "TODD" had to drive all the way to Vancouver to pick up a prescription. Once again it just seemed so unfair.  That same day  I received a "kick to the stomach" that I didn't see coming. I can't and won't expand on the details however I have had to give it over to God. A difficult task as I have been wounded deeply. Although Todd dropped the ball the day before his redeeming qualities overshadowed a very minor situation. He has the ability to give me perspective, keep me grounded and loves me and our family unconditionally.  Despite our best efforts Kouryney's  pain continued.

By Sunday afternoon Kourtney was adamant she needed to go to the hospital to get some IV pain medication. I was in full agreement as I felt I was in over my head we were giving an insane amount of medication with no benefit. I felt helpless. In a last ditch effort I tried to get a hold of our family doctor on a Sunday afternoon. I don't take for granted that these doctors are so willing to help. But taking Kourtney into the hospital brings another set of problems. Doctors who don't know Kourtney's history have a difficult time wrapping their heads around EB nevertheless her 20 years of having it. Kourtneys  doctors don't want her admitted for because she is so complex. The long and the short was DR K became her MRP.  He acknowledged that this had been an erroneous weight on my shoulders and he would take over. He changed a bit of this and added a little it of that, called Dr C and voila the pain went away in an hour. No word of a lie. One little pill a strong antinflammatory changed her pain instantly.  It's been 48 hours and Kourtney is back to herself.

Now we wait......for the results. Thankfully Kourtney can leave the house and be more distracted.

So so thankful for the medical people in Kourtney's life. It certainly takes the pressure off not being her MRP but just her MOM.

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!