Plans for 2013

Quick New Years Update!

My parents left on Saturday along with my brother and his family. We have all been walking around the house a little lost.  Kourtney has been especially down since their departure.  We had to have the discussion again about moving to Saskatchewan as Kourtney feels this would be a solution to a lot of her social issues. Unfortunatley, no matter how much Todd and I try to work this through in our minds, it is not feasible for many, many reasons. We both feel that we have a great life here and Abbotsford is where our home is and where we belong.  Enough said. The Kujawa's are staying put.

We have now have switched Kourtney's pain medication over.  She is sleeping much better and is able to stay up during the day. Her pain is now controlled and rarely does she feel the throbbing, aching pain that starts in her feet and works its way upwards.  Although everything seems to be on the upswing the only way this crisis can come to a close is to do bloodwork on her again this week. It will give us an idea where we are at with nutrition, (this looks promising as Kourtney has put on 8 pounds since November 24th) as well as some idea what her bone marrow is doing.  More than likely we are anticipating another transfusion as her body has been under duress for months. The doctors are working on a plan and the Occupational Therapist is going to figure some solutions to her foot pain as well.

We are making plans for our new normal;  some things to look forward to for the new year:

We are interviewing a nurse/nanny on Wednesday
We are anticipating returning Kourtney to school in the new semester
I am planning to return to my job and my coworkers that I absolutely love.

Have a Great New Year's Eve. It will be quiet around here as we have had non-stop guests and visitors  in our house and it's kind of nice to have our family (and Jenna) here.

DAY TO DAY......moment to moment

I have written 3 different blogs in the last 3 days. All saying 3 different things. Every day has been so different. Since Friday, we have been unable to manage Kourtney's pain. Her high's are high, her lows are gutwrenching difficult not only on Kourtney but for anyone who sees it occur. On Christmas Eve we made a switch to a medication that hopefully won't give her the high's and the low's, however it is all about weaning her off one and putting her on another with that comes withdrawal (which is a whole new type of pain).

Her skin looks better everyday, and the dressing changes are easy breezy and she has gained a whopping 7 pounds.  Its just this darn pain control that we can't figure out.

We did manage to have a great Christmas day celebration with the Lutzers, Kujawa's and the Finlays, unfortunately Kourtney has been unable to leave the house as we never know when the attacks will come as they have been so unpredictable.

We still have not been able to find a "new normal". Once again it's living day to day, moment to moment, knowing that God has a plan to do great things...............I just have to be patient.

And now she is itchy . . .

The fevers are gone, we are starting to understand her pain response, her skin healed up more than we have seen in over a year, and with the healing comes itch. Kourtney says that she would rather be itchy than in pain.  I agree, it is not as gut wrenching to watch her eyes roll back in her head when her back is rubbed, or head is scratched.
Today we got a visit from a doctor who specializes in chronic pain. I don't think we could have met anyone more kind, insightful and full of ideas in assisting Kourtney with her pain. I even got some ideas about the foot pain that has cursed her since July . . . other than Dr. Courtemanche I have never met someone who could give us such practical ideas.
We are so thankful for the gradual improvement in Kourtney, although the crisis is now over, there are still many decisions regarding pain control, education, and getting her into a daily routine. It is so difficult to be patient, as we live in a society that everything is done at the push of a button. It is difficult to be homebound during the Christmas season and want to be part of Christmas.I see and hear of all the Christmas parties, and gatherings that everyone is attending and feel sad that I can't be part of the celebration. But then I am reminded daily by mom and dad, that this "season" we are going through is the true meaning of Christmas. It is having Joy no matter what your circumstances, Joy even in our sufferings.

Hullabaloo

Lexi taking a nap under the Christmas tree.

After all the hullabaloo about the PICC line, it came out with just a gentle tug. However, we did go into Children's yesterday, and were completely surprised that the new bridge had decreased the traffic congestion that over that last 15 years to which we have become numb. The radiologist gave us hope that he could "dissect" the PICC line by first using numbing cream, but cautioned that if it caused too much pain Kourtney would have to come back get anaesthetized next week. This made Kourtney (and I) more anxious. In order for the numbing cream to work it had to stay on for the longest hour of our week. Kourtney was super anxious and cried when her arm was touched by the radiologist. Just as the freezing needle was going to placed the radiologist tugged on the line . . . and out it came. We all started giggling and laughing and Kourtney was in a state of shock that she didn't feel a thing. The radiologist said it made his week!  (The most amazing part was that the line wasn't secured very well, so the fact we got so much use out of it is a true miracle, and big kudos to Todd on securing during the dressing changes so it never pulled out.)

It was great to get out with Kourtney yesterday, but her pent up anxiety took a toll on her and she had more pain than usual. As I have stated before, Kourtney's road to recovery is going to be long.  It is very difficult for me to find the balance between how much we push Kourtney to get back into "living" again and how much rest she needs.  I have really changed my perspective from 4 years ago, as Kourtney is the one who now needs to decide what she can and can't do.  I have taken my expectations off which is the most difficult, but right, thing for a mom of a teenager to do. Kourtney's anticipatory pain, and emotional exhaustion play havoc with a body that is already diseased.  I can encourage her, do her dressings, and look after her the best way I know how.  Kourtney will need to decide if she wants to walk again, climb stairs and take charge of her educational needs. I simply can be her best cheerleader, but I can no longer play the game for her.

I have a feeling that our life is going to change dramatically as we once again need to find a new normal.

Today felt different . . .

Actually, we didn't go to Children's today, and the dressings were done this morning. We found out that Kourtney's PICC line removal is not straightforward.  We were told there was a two week wait to get them removed by a radiologist. Once again Dr. Courtemanche pleaded our case, it went straight to the heart of the guy who did Kourtney's dilatation. (Ahem for you faithful blog followers - I did retract my statement about him), he had "no" problem fitting Kourtney in for tomorrow.

Although yesterday was a disappointing day it was nice to see Kourtney get out the house, even it was a trip to the hospital. We thought we would be on call today to go to Children's for the PICC removal so we were going to do her dressings last night.  She resisted having her dressings done and just wanted to have a nap. When she woke up it was like the old Kourtney had returned, chatting with Grandma and Grandpa in her room decorated with white Christmas lights.

It continued today.  This was the first time in years that there weren't tears with the dressing change, no shearing pain, and no 2pm fever spike. She had a quiet day on the couch, cuddling with the kitty. I am hoping and praying that these are all good signs. With our security blanket (the PICC line) coming out tomorrow . . . we are praying that she has finally, finally turned the corner.

And we're off . . .

Janelle and her parents took Kourtney to Abbotsford Hospital this afternoon to have her PICC line removed.  Long story short, they were unfamiliar with the type of line Kourtney had, they were not able to remove the line and the sterility of the line was been compromised.  So . . . now it's off to Children's Hospital for an unplanned emergency procedure to remove the line.

Cancel that!

Doctors are not available to remove the line at Children's Hospital tonight so we wait . . . until some time tomorrow.   We understood that it would be a simple procedure; use a little Emla cream and pull the line out, but every one we speak with tell us it's more complex than they can handle.   She will likely have to "go under" to get it removed.  So . . . now it's off to an unscheduled emergency dressing change tonight at home.  We'll be awaiting the call from Children's Hospital some time tomorrow and want to be ready.

Home Sweet Home

As much as I was dreading coming home, we have settled into a routine. Our "Kelly" helped out with dressing changes today; it went smoothly.  Kourtney's skin is looking better and the signs infection are starting to dissipate thanks to a wonder-dressing called Acticoat.

The only thing we are dealing with are the low grade fevers that cause a considerable amount of pain. Today, Kourtney could feel it coming on. She said it is like she has a heartbeat in her foot. If memory serves me correctly 4 years ago when she had the infection these fevers lasted awhile, I used Advil to reduce them but it caused her to bleed a lot from all her wounds. Now we just use Tylenol and although is effective it is not quite as effective as the Advil.

The PICC line comes out tomorrow. We haven't been flushing as there is almost certainty that her hemoglobin dropped so low after the PICC line was put in because of the heparin flushes. We noticed her dressings were saturated with blood at times and she bled easily just like when we gave her the Advil.

Shaelyn has not been forgotten during our crisis. While Kourtney was in the hospital, her frog and hermit crab died. We already have a dog and a cat. Our dog loves to cuddle, but our cat is elusive and won't cuddle with anyone.  Shaelyn got it in her head that she needed something that would not die easily; a kitty from her friend Avery's farm, a 4 month old barn cat.  Todd and I both agreed that a kitty would be a great distraction for all of us. We didn't do a lot of research on this cat, and of course I don't know much about cats. So when we met Fresca for the first time, I was a little nervous after I saw his long hair. But this cat is so cute that it is difficult not to fall in love with him at first sight. Even Kourtney likes having this purring cuddly cat with her. Our dog and cat are very traumatized to have this new member of the family . . . it has been fun to watch.

Todd and Kourtney

Todd came home last night from the ER with pain medication for kidney stones. He will have a CT scan done this week in order to see where the stone is . He also has a throat and ear infection....he is in rough shape. Todd has not slept through the night for months now, even though I stayed with Kourtney most nights at the hospital, Todd can not shut off his mind.
So last night I was on call for Kourtney, and finally Todd got a really good sleep. Kourtney slept well which means I did as well. We have meds to give at 2 and she is usually up by 5 to go to the bathroom as we have now switched her to night feeds again I fall back to sleep at 2 but at 5 I am wide awake, it makes me look forward to my afternoon nap.
I talked to Dr Cautermanche on Friday. He wants the PICC line out.....the sooner the better. I asked him about bloodwork, he felt it wasn't necessary for another 6 weeks. I am thinking a hemoglobin should be done, but sometimes I would rather go by symptoms.
Kourtney had one of her better days yesterday. She got sleepy around 9 and slept solid until 5. She continues to spike low grade fevers, with the fevers come intense pain, that cripples her. We have learned that tylenol seems to help more then the pain medication. Yesterday, we either outsmarted them or the fevers are starting to get better.
The dressing changes are easier to get through because Kourtney's pain relief is so much better. They still remain traumatizing for Todd and I, as we both know what kind of process it will take to get her skin into half decent shape. If somebody were to see them......yep you would be traumatized.
We still covet your prayers, just because we are home does not necessarily mean that Kourtney is better. She only gets off the couch to go to the bathroom or get ready for bed at night. I feel that Kourtney's road to recovery will have to be motivated by Kourtney, if I ask her to do something, she resists  . I am willing to help her out with whatever she needs but I will take cues when she is ready. I have let her know that I am happy to support her but I can't make her do anything she doesn't want to  do. It may sound rather calloused of me to say this, but I have tried to do this before, and it just doesn't work. When Kourtney is ready, she will tell me. The other day.......Kourtney asked me wash her hair.......that was a small step in the right direction.

The toll on the family.

It took us a couple of days to figure out medication regime for Kourtney. Today was the first day it seemed to be working.............
It is beginning to take its toll. Todd is in the emergency right now he has a throat, ear and kidney infection. He is getting pain meds right now and awaiting bloodwork. Please continue to pray for our family.
Thankfully my parents are here. They have sooooo helpful and seem to always be in the right place at the right time. My dad even put his chefs hat on today and made lunch. It was delicious!!

She is Home

Kourtney is home!  She looks and feels better, the shade of grey is now gone and some colour has returned to her face, her pain is under control, and she is gaining weight. She just showed me how she can swallow her milk in one gulp (pre-dilatation it was 5-6 swallows. I might have to retract my statement about the radiologist . . . first time in years she has been able to do that). Her skin took a beating . . . the cycle begins.

There are still not a lot of answers as to what really started this crisis.  G-tube feeds running through her (dumping syndrome), a gastrointestinal bleed, chronic wound infections, inflammation; more than likely a combination of all the above. All we know is this road to recovery will be long and arduous.

If you have been following our blog for the last couple of years, most of you know that 4 years ago we went through a similar, yet different, crisis. This time we have been fortunate to have the PICC line to get the necessary blood work, treat the underlying infection on her skin, and save numerous painful IV pokes. We know so much more about Kourtney than we did last time and are able to treat her better. I have seen Kourtney get better but I know what is in store for us.

I also feel that being in our community hospital, we tapped into invaluable resources for our family; counselling, child psychiatrist, social workers, nursing support, as well as some amazing friends.  (I told the psychiatrist that he opened up a lot of open wounds for me.  He just smiled and said, "That's my job." ) These people are very aware of my rock bottom experience and are helping our family get through this crisis. It will save numerous trips into Vancouver as well so we can have the closer to home approach. 

Next week Todd and I will take Kourtney into Children's for more blood work. If it's all ok then I feel the PICC should come out as it is a big source of infection, and then we face the long road ahead for healing and building up Kourtney's strength again. Knowing that Kourtney has not gotten worse in the last 10 days of hospitalization makes me optimistic. This week though will be a long week . . .

The Fighter

Kourtney's pain medication has now been switched from IV to her G-tube. She had a great day yesterday with relatively little pain. The low grade fevers come and go at different times of the day but once again this is a normal part of the process when there are open wounds. She is tolerating her feeds and has gained 3 pounds since admission. (Since one of her feeds went onto her bed instead of in her I say that is a good sign.) The dizziness is gone, and her legs are slowly becoming stronger. She has been getting exercise by her numerous trips to the bathroom.  The copious amounts of IV fluids help to keep her fever down but they also require frequent trips to the bathroom.  We opted out of getting her a commode chair because this encourages her to continue to walk. The dressing change was easily managed. We are hoping to go home on Thursday, and then hopefully have a meeting at Children's to discuss some long term plans.

Despite Kourtney doing better, yesterday was one of the most difficult days I had in a real long time. The psychiatrist had a meeting with Todd and myself attempting to help us through our crisis. This meeting triggered emotions that have been suppressed and maybe not completely dealt with. Throw in mental and physical exhaustion and I became messy quickly.  I felt angry and scared. The thought of staying in the hospital any longer was overwhelming;  the thought of bringing Kourtney home seemed even more overwhelming. I wanted someone else making decisions for Kourtney. I have nothing 

more to offer or give.

When I got to the hospital I needed to talk to someone, but due to lack of cell service, it became obvious that my conversation needed to be with God. Nobody else could settle this matter other than the one who created Kourtney and chose that she would be  my child.  "How dare God do that to me?" I called out.  As I lay in bed, the little blue pill I took would not overtake my sleep.  God would not let me until I worked out my anger and resentment that I was holding on to. Oh my was there ever a lot that I had to let go of. I know through the night we had nurse that was a believer.  I knew she was praying for us. It took me hours . . . and then Peace came. Peace that can only can come from giving up control, knowing that God is in control. Finally sleep came . . . but it was the Peace I received was so freeing.

In the stillness of the night God reminded me that there was still so much more that He needs to accomplish through Kourtney. 

"Call unto me and I will show you great and mighty things which you do not know"

I just have to continue to remember that as much as she looks like me, and has the attitude like me, she is not mine.....she belongs to God. The kid is a fighter . . . by all human understanding she has no reserve to keep fighting this horrible disease, but she continues to fight. Has she turned the corner . . . not yet but I can be cautiously optimistic that she is close.

Results are in!!

Kourtney had blood work today. . . hemoglobin is still hanging in, albumin has come up ever so slightly and her white count is fine (which means there is not a blood infection or septicaemia). The fevers are coming from her obvious leg wound.

This is the first time in six weeks we can say Kourtney may be turning the corner, but the road to recovery is still long. 

Continue to keep us in your prayers!!!

The Voice of Reason

Yesterday after my good sleep I got to the hospital, Kourtney looked so unwell. Her temperature started to rise, heart started pounding and the temp didn't come down with Tylenol. It made me physically ill to see her in this shape. The reason why temperatures are scary is that Kourtney has a central line in. She is colonized with staph and therefore the line is as well. So if her temperature starts climbing over 39 then the line needs to come out and we are looking at a very sick child with no IV access.

Kourtney got some very special visitors that became a great distraction for me as well for Kourtney. Ryan and his Mom Paula from North Vancouver. Ryan and his wife, Ren, have a little girl with the same type of Eb as Kourtney. Ryan has spent countless hours learning and educating himself about EB. Kourtney and I felt very honoured that they would make the trek out to see our family.

After they left Kourtney's temp had not come down, she felt unwell. I felt that she should be taken into Children's under Dr. Courtemanche's watchful eye......then my cell phone rang.

It was Dr. Courtemanche.  He was fully aware of what was going on with Kourtney, and said at this point she is sick enough to be at the hospital but not sick enough to be at Children's. He reminded me at Children's the only "eyes" on Kourtney are the resident team called (CTU), and in Abbotsford we are constantly being monitored by real and experienced Pediatricians who know Kourtney very well. He told me if Kourtney's temp spiked to 39 then she would have to be taken to Children's. However at this point her temps have remained "low grade."He realized that Kourtney is very fragile at the moment but there would be nothing different they would be doing at Children's. He said he is around and to get a hold of him, if I needed any reassurance or advice. He also told me our GI doctor was away, so on Monday they will talk to him, as well Dr. Davis and Dr. Courtemanche are putting their heads together about everything as well. It is very nice to be able to leave this all in their capable hands.

I came home for another sleep......although my sleep is short lived these days, it feels nice to have a comfortable bed.

Kourtney's spirits were really down yesterday. I do think it is the Morphine, however I do know that once she is switched to oral pain medication, I will feel a bit better bringing her home. I want our family together again.

Update

Abbotsford Hospital doesn't have wifi, my 3g doesn't work the greatest as well, so that is why blog posts aren't coming daily. Keep checking, we are attempting to stay ontop of it.

Yesterday morning I woke up and realized that Kourtney and I both had slept for 6 hours without any interruption. I was so relieved until I found Kourtney in a pool of her feed, it had leaked out onto the bed, and of course this meant dressing change. It was one of the better dressing changes because Kourtney was so medicated that I was able to really clean her up well. She sat in the shower for at least an hour, all the dressings slid of easily, and her skin wasn't looking too bad. I thought Kourtney was starting to turn a corner......
But then Kourtney started having incredible pain in her leg and spiked a fever. The fever went down instantly with Tylenol, however the pain was a bit more difficult to stay ontop of. She was started on Iv antibiotics and given Albumin( this is what was so low when she was admitted) to see if this may help more with the wound pain she is having. Lack of Albumin causes swelling in the tissues.

During the late afternoon she perked up nicely, as was her usual happy self, with a will to push through all this. She knows that the only way through this is stay well emotionally and the best way for her is the continued visits from friends and family-that seems to fill her love tank.
I came home for a sleep last night and Todd stayed with her. It was nice to sleep in my own bed, and wake up to Lexi calling for me at 0600.
I have spoken with most of the Kourtney's doctors from Children's. They all feel Kourtney is getting the best care in Abbotsford, and at this point there would be not much more they would be doing for her their then what they are doing locally. We actually think we are getting better care, although it is very difficult not to be under the watchful eye of Dr Davis and Dr Cautermanche. They both have poured a lot of time into Kourtney and know her well.

At this point what we know.....is Kourtney is stable, she is showing signs of improvement however the road to recovery  for her is going to long and slow. I am so happy her pain is under control and we are able to change her feeds to see if they are absorbed better.

Shaelyn is doing a  better. My mom has always had a way of making us "talk". That's why I became a coffee drinker at the tender age of 10, she would pour me a cup and make me tell her about my day..She was able to get Shae talking about the issues( but Shae isnt' drinking coffee yet). She is happy and lighter, more worried about her Grade 6 immunizations then anything else right now.

Staying Put

Kourtney will be staying in Abbotsford for the rest of this week and into next week as well.  Her pain continues to be managed with morphine but she is weary and worried about what the future holds.  We are still waiting for the team meeting at Children's Hospital; Dr. Courtemanche has heard from a few key doctors but is frustrated that some remain silent. They won't be silent for long as Janelle plans to rattle a few cages tomorrow!

Today, however, we are thankful for many things!

• Janelle's mom arrived from Regina
• Lots of friends and family came to visit (as well as a few Abbotsford Heat hockey players)
• Cups and cups and cups of coffee
• Tomato basil soup from Safeway
• Another good dressing change
• Excellent care from the doctors and nurses

Tonight Kourtney will be starting on a different type of feed as the dietitian here has concluded that Kourtney has not been properly absorbing some key nutrients in her current feed. Dr. Courtemanche has also recommended supplemental zinc and selenium.  Who knew that those elements could be contributing to her low albumin levels?

So, we sit and wait.  Sitting and waiting is not so bad though when surrounded by such good friends.

Holding Pattern

Kourtney is still the Abbotsford hospital waiting a bed at Children's as well as a "plan" for her. I am not in huge hurry to go.....as I am surrounded by so many friends, family coworkers. We have had the party room all day, even the members of our local hockey team the Abbotsford Heat, came and got a picture with Kourtney. (our young nurses were a bit excited to have them there as well).

What they are thinking is the "hunch" I have been having for awhile. Kourtney is not absorbing her feeds.This would cause a lot of her problems as well. So right now in our local hospital they have changed her feeds to something that is absorbed better. I do think this will "steer" us in the right path but unfortunately I don't think this will fully solve the issues, and at this point am afraid to speculate what is ahead of us.

My mom came today.....we have made a very nice room for her downstairs, I have a feeling she is going to be here for awhile.

Tired, exhausted, but so relieved that Kourtney is comfortable.

Quick Update

I knew Kourtney wasn't well on Sunday when even Uncle Wonderful couldn't move her off the couch to go to the mall and play the "wheelchair game" they have come to enjoy. She did have a good day and was restless at night.  So. . . I thought maybe her hemoglobin had come up. I ventured to take her for a walk in her wheelchair.

We got about a half a block when she turned pasty white and became nauseous.  Meldon and I took her back to the house, where it took her a while to recover, and she started having major pain.  I deliberated all day what I should do.  My dear friend Angela came over and discussed with Kourtney what would make her feel better.  Kourtney said, "I want to go to the hospital."

Due to a bed crunch at children's hospital, Dr. Courtemanche encouraged us to have her assessed at Abbotsford Hospital. Thanks to some wonderful people I work with, who I can truely say are my friends, we got directly admitted and were assessed quickly by a paediatrician. After they drew some blood work, my suspicions were right, her hemoglobin was OK, however now her albumin is scary low.  What does this mean now???  We are really not sure.  Kourtney will be transferred to Children's after a team meeting where they will come up with the most reasonable options.

It is a relief having her in Abbotsford, especially knowing her pain is so well controlled with the morphine. The dressing change was totally and completely peaceful.

She is in the right place.  I am really happy that I can be in our local hospital for now. 

Clarification

I know we have a lot of people praying for us and reading the updates on Kourtney.  I feel that I need to clarify a few misconceptions that may be circulating in the community.  I want to make it clear that in no way are we keeping Kourtney "comfortable", nor have we "given up" Hope that she will get better.  However, we have taken all of our cards off the table to make sure we are giving Kourtney every chance for her body to get better.

At this point we have withdrawn her from school and have not attempted for her to continue with her virtual school.  Her body is weak; we want her to preserve any energy she has into healing.  Her body is working very hard to keep up so until we know what we are dealing with Todd and I are in agreement that this is a necessity. We do know and fully understand that is it important to keep her emotionally well.  I believe all the visitors we have had as well the company of our caregivers have helped keep her spirits up. I realize soon that her brain will need more stimulation but I know that right now I would just become terribly frustrated if I tried to encourage her to do school work. She has started some physio as well and recognizes how important it is to keep moving.

What we do know is that Kourtney is not yet in "system" failure.  Her kidneys and liver are fine. Her heart is "OK" at this moment, but because the heart is a muscle the more it works the bigger and weaker it gets (opposite from what we would think - not like when we exercise). Kourtney's heart is beating so fast related to the anemia and malnutrition issues that the possibility of damage is a reality.
So what are we doing now?

To preserve our sanity Todd and I decided to switch Kourtney's feeds to the daytime instead of night. Todd (I seem to have the Lutzer gift of sleep) was very sleep deprived as Kourtney's feed alarmed almost every night due to Kourtney rolling on her tube as well a very finicky feeding pump. In addition Kourtney had to have her first round of her daily double at 0500 am. Sometimes it was so difficult for her to walk to the bathroom that she wouldn't make it on time. Keep in mind that there were dressings that got soiled. I think her feeds were running right through her as it seemed to come on so quickly.  This could be why her nutrition is so poor.  So now that Kourtney is home we are doing "intermittent" feeds during the day.  So far so good.  Kourtney said she sleeps better, and now Todd does as well. We are hoping that doing this may help slow down her bowels a bit too and increase absorption of her feed.  So far there have been no emergencies.

We as well have restarted her on an injection called EPO.  We had taken her off because the hematologist believed it wasn't working.  However, since she hasn't been on it she hasn't been making any red blood cells which she always have made in the past. EPO is what Lance Armstrong was using to "blood dope".  It stimulates red blood cell production and kicks them into high gear. We are holding out hope that this will help.

I think Todd looks a little bit like Lance Armstrong!!  

We still have not heard about a team meeting . . . but I do feel that the doctors feel we have to give this time to play out before there are any moves.

Once again, we ask for your prayers.  It is very difficult to have life in a holding pattern, especially around the holiday season. But as I have said before it is way more Peaceful around our house. The break has been much needed.  I have started getting out and enjoyed some Canadian Black FridaySales!!

The lazy rainy days of . . . November

I haven't been out of the house for two whole days;  probably a record for me. This morning was rough as Todd and Shae went off to school and I knew it was going to be just Kourtney and I to face the day. The happy humming of the vaccum as our dear and faithful cleaner Anna was busy making our house spic and span, and visits by very special people made the day less quiet. There is more Peace in our home now then there has been in years. There is no more pushing Kourtney to walk straight, do homework or negotiating for 5 more minutes of sleep. No more outbursts of tears saying she can't do this anymore. No matter how much I encouraged her the more I realized that a regular routine had become way too difficult for her.  I try to wake her up around 8, we have moved all her dressings and supplies to her bedroom. It just seems so much simpler now.  This morning I did most of her morning routine while she was on the bed. We were going to go out for a walk, but the rain didn't let up.  I am realizing that Kourtney's stress level, was affecting our whole family more then we really knew.

There isn't a lot to report from a medical perspective, except Kourtney is swallowing better after her dilation. The radioloigist who did Kourtney's dilation is now on my very small list of doctors who will never touch her or any child with EB ever again. Kourtney has had two dilataions done before and never has she experienced the pain afterwards that was inflicted on her. (She wasn't intubated so it was not the tube that caused it).

I have emailed all the doctors and have requested a meeting to discuss what needs to be done regarding Kourtney's care. The one thing that gives me HOPE right now (call me crazy) is a blog post from August 2009 . . . The Bone Marrow Transplant.

In all honesty I believe it will happen one day but it will happen at Children's Hospital and it will be covered by our health care. I believe there will be a clinical reason to get it done and that reason is her anemia issues that I blogged about a month ago. A bone marrow transplant would replace her tired worn bone marrow with healthy under worked bone marrow.

It seems like the perfect script.....but once again I have no control. Kourtney's is God's and I have to place this in HIS hands. Right now I am enjoying the blanket of tranquility over our family right now and for that I am thankful.

Continue to pray

Kourtney's morning started out with a dizzy spell. The rest of the day was better.  She had more awake time than sleep time and required nothing for pain.  During the dressing change she was quite miserable . . . she hasn't been that miserable in a long time.  I may be a sign that she has a little more energy).

I called for a team meeting with Kourtney's Doctors at Children's. So far I have only heard back from the hematologist. He told me he didn't want to alarm me in some ways a bit of redemption for me. He attempted to explain what he meant, offered me some Hope that all is not lost. He isn't 100 % sure of  his suspicion that Kourtney's bone marrow is completely depressed.  (I don't know if one bullet to the brain is easier than 4 stabs to the heart.) If he had told me this on Friday, would I have felt better?  I'm not sure.  I know I fear the unknown more than the known.  He also reminded me that Kourtney's nutritional status can be causing a lot of these symptoms and agreed there needs to be a team meeting.

Please continue to hold our family in prayer. Little Shae has no appetite, (and for you that know her that is so unusual, she has lost quite a bit of weight).  Todd is busy this week with school, I am thankful he is continuing to work despite what is going on at home. He is my Rock. Most of the times I have Peace. Last night I was able to get out to a movie.  I'm so thankful for my friends Angela and Jeanne who have been there every step of the way on my journey. Thanks to my other friends who have come to visit. Keep them coming!

Kourtney is doing OK emotionally. There are moments that she will come up with some of the funniest things, and then moments later she will be overcome with emotion and fear. However, she knows how awful she has felt, and I do believe that the break from her highly regimented routine is a welcome change, not only for her, but for all of us!!!!

PEACE

Last night I asked one thing to pray for and that was PEACE. We were all able to get some rest tonight. We had many visitors yesterday, and we appreciated it. Anyone please come for a visit. You don't have to bring anything (coffee is nice) or a great Netflix suggestion. Just let us know before you come. Kourtney remains low on energy as well is very scared! She knows how unwell she is. We just want to have her rest. She had a lot of her friends come yesterday including her 18 year old friend Monique (HAAHAA). Today, pray that there will be joy in the day and in our journey! Also pray for wisdom for Todd and I in the weeks to come. We don't want to feel constantly panicked but if we feel Kourtney needs to taken in to hospital again that it will be clear. Yesterday was one of the most difficult days I have had in years, but thanks to amazing, amazing friends you guys helped get our whole family through it!!!

It's like a knife went through my heart!

This will be probably one of the most difficult blogs that I will have to write. A part of me is numb, the other part of my mind is going 100mph and trying to bring Hope to this situation. However, since they could not isolate where the bleed came from the hematologist highly suspects her bone marrow is not working anymore and even the transfusions will only last for 3 weeks at a time. When he told me this it was like a knife went through my heart. He told me like I knew this was a commonly known fact and I should have known this and in some ways that was even more difficult for me to take. Kourtney was in the room sleeping so I was the only one who absorbed this information. We also learned that Kourtney's nutritional status is not good. She is not making use of all the feed we are giving her. Not sure why, but once again it seems like Kourtney's body is so overwhelmed that she is starting to shutdown. At this point it will be "wait and see" how Kourtney handles this transfusion. If she holds on to it then we will have more Hope that this was an acute blip with EB. If she doesn't hold on to it then it will be clear in our minds that we will have many decisions to make regarding her care. This was a blindside for me and not something I was prepared for. Please pray for strength wisdom and a whole lot of HOPE. WE are exhausted, scared, but also feel that although we are walking through the dark valley we know and feel that it is so out of our realm of control. Thanks for your prayers!

Water to wine....

We found out a couple days before the procedure that the anesthesiologist that was going to do Kourtneys procedure was the one who bullied us into the bath that damaged Kourtney's skin 4 years ago! I didn't have enough emotional energy to fight this and decided that all I could do was pray that God would turn water to wine or that God would give Kourtney and myself some sort of grace and love for this obnoxious woman. I prepared Kourtney for this and told her that she hopefully had learned her lesson to listen to this mama bear! On arrival to the hospital kourtney told me she was having bad thoughts and was convinced this dr was going to poison her.... I explained to her that her job is her livelihood and that would not to this! (but then I started having bad thoughts!!) On arrival to surgical daycare our nurse was kind,fastidious, professional, but didnt crack a smile. We went through our regular procedures, no blood pressures, temperature under the arm and yes she leaves her shoes on when she gets weighed, and do you have an attachment for her gtube? Then I asked who was the anesthesiologist, the nurse started into a fit of giggles when she told me it was Dr Lauder (the anesthesiologist that knows Kourtney the best and took Kourtney under her wing after all of this happened) the nurse excused herslef from laughing by saying she just loves Dr Lauder...somehow I knew there was more to that story from the nurses reaction however,due to the professional code ethics I will never know what kind of shakedown went on! All I know that God must have have a sense of humour by taking the murky water and turned into a fine wine. Sometimes it is the smaller miracles (and very funny)that help me get through these very tough times, the best part is that I didn't have to anything but have complete Faith and trust that God will work things out! Still after the procedure there are still no solid answers! Kourtneys hemoglobin dropped again significantly so she was transfused last night! Kourtney will have her heart checked out as well due to her abnormally high heart rate! The weird thing that her skin is not the issue at this point, infact it is better then it ever has been! I am trying to stay positive...... The other day Kourtney had visits from Kim and Kelly.....if you guys are reading this you have been missed more then you know! You gave Kourtney friendship and showered her with so much love! Also Jennifer M thanks for your visit, you are a true friend to Kourtney,a rare jewel!,, Please hold us in your prayers!

Routine

It is November 13th today....the new school year is well underway, and there is no routine. I feel like we have been in a holding pattern for the last month, as Kourtney has struggled with being unwell. I keep hoping and praying that we will settle into a new normal.....and we haven't. I don't do well not being in a routine. Today I had a meltdown.

Most likely it was because  my mom left today (she will be back in 34 days with my dad), its pouring rain,  pitch dark outside at 430, and my jeans are starting to feel tight again, as I have been able to keep up with my exercise routine. I don't know how much I should be pushing Kourtney to be exercising, studying, her body is so weak. She just yawns and yawns and yawns when we do homework with her, and when she stands up she is short of breath and goes so pale. A part of me just wants her to watch TV or netflix. If I push her I feel guilty if I don't push her I feel guilty and ashamed of myself for lack of discipline......but I can't do it all. That is the way I feel right now. Kourtney is so irritable that even the slightest wrong move can send her into orbit. We both know that I know her skin the best.

I also had a long chat with the hematologist today. I am not sure why he thinks that her hemoglobin of 79 is fine, and nothing we should not worry about. He didn't think her anemia was a problem until we went through her history and then it became evident that a hgb was too low for her. Although he is such a nice guy, and has always been receptive to my suggestions, I don't think he fully understand anemia of EB- I find that exhausting. But then I talked with Dr Cautermanche, he had received the report from the Abbotsford Hospital, and acknowledged my concern. He gets EB. He calls himself the plastic surgery paediatrician quarterback and understood my complete frustration ! He rallied the troops and......

Thursday Kourtney will have a scope. Please pray that they will find the source of the bleeding and that it will be simple fix......like changing her medication. For Kourtney to be poked and prodded it just causes so much damage, even the scope has the potential for problems. Then she will be admitted overnight, and be transfused. Please pray that she will be able to hold on to these red blood cells and she will feel better!! She will also see a cardiologist and see if they can get to the bottom of fast heart rate. 

I made the mistake of investigating on the internet....not a good thing. I have to take this all one day at a time. I am exhausted mentally and should have not gone close to the internet.

Please pray for an answer on Thursday.....it is not a great way for her to live.....we all want her well.

I want to say she is better.

I want to tell you that Kourtney is better......but she isn't. She continues to be dizzy, short of breath, and pale. I phoned the hospital where I work to see who the paediatrician on call was, and it was one of my favourites. I took the liberty and called him,he is such a good guy he met us there, and avoided long ER wait.

He checked her heart out right away, because it was galloping. It was fine. They did a hemoglobin....and it has dropped again!!! Frustrating that they didn't figure out what the problem was while we were there.

We will hang out tonight here, and then take her in this week for another transfusion as well as a scope.

Yep I am scared!!

Home

So we got home at 9 pm! Todd and I had to learn to look after Kourtney's line before we left! Never in a million years did I imagine that I would be doing daily heparin flushes, and 1 minute hub scrubs, for Kourtney! Yes the line is still in, she still needs her scope to investigate her bleeding as well keep a close watch on her blood levels!

Coming home is bitter sweet.  I have to be honest! In the hospital I had nothing else to do to tend but to tend to Kourtney.  It made me realize how easy she is to look after (when it is just her and I).  No early morning routines,  I could take my time with the dressings, no housework, no laundry, just her and I watching NETFLIX. Both Kourtney and I were getting antsy and were wanting to come home.

But as soon I walked through the door the overwhelming feeling hit me as Shaelyn's piano didn't get practiced, tears that she doesn't understand her math, the house in the same state of disarray when I left, lots of unpacking from the hospital stay, and the list goes on, figuring out how I was going to catch Kourtney up with her homework . . . and the list goes on.

But last night as I laid beside my snoring husband, just knowing he was close by, made me realize I was indeed Happy to be Home.

Hospital

I really am sorry for not updating you all sooner. However, blogging on my iPad is a bit tough as Kourtney's laptop has been in use with our new addiction . . . "NetFlix".  Kourtney has been in the hospital since November 1st.

Yep, my suspicions were right the other day when I blogged about her not feeling better . . . nobody knows how bad I wanted to see Kourtney doing well after her her transfusion.  I had a week off work which was a relief because then I got a pretty good idea of what was going on with Kourtney. She had missed a couple of days of school prior to the transfusion so I wanted to help her catch up. I started studying good old Chemistry 10 and learned all about radioactive decay and tectonic plates. The more time I spent with Kourtney the more I realized that she was unwell.  She couldn't stay awake when I was going through her Science and it seemed that every bone in her body ached.

On Halloween night I took Shaelyn and her friend out trick or treating.  When I got home Kourtney was whiter then a Halloween ghost and was unable to concentrate on studying for her Science quiz.  I took her to the bathroom that night, and noted her stool to be black. A part of me wanted to pretend that I didn't see it, but its smell and consistency just reassured in my mind there was a bleed going on. Thursday morning she was shaking and continued to be pale. When I saw her in this condition I became nauseated knowing that she was most likely bleeding internally. Todd went to school to arrange for a TOC, and I started  packing supplies for a stay in the hospital.  I phoned Dr. Courtemanche, and he said he would make arrangements for her.

I started second guessing myself when we drove in as Kourtney seemed to settle down somewhat.  Upon arrival at Children's Hospital we were triaged right away as Kourtney's heart rate was 176 bpm, and her colour was fading very quickly. The whirlwind of events that occurred was amazing.   We were seen by a doctor in emergency within 30 minutes (the wait would have been closer to 3 hours). The anesthesiologist was called and after two tries the IV went in the anesthesiologist said, " I am sweating like a pig."  Kourtney, you can really make the guys at the top of the totem pole sweat.

As the blood work results started slowly drifting in my suspicions were confirmed.  Kourtney's hemoglobin dropped significantly since her last transfusion . . . there was a geyser inside somewhere and we had to figure out where . Dr. Courtemanche got us admitted to "his" floor; the floor where surgical patients go but because of what happened years ago, he is pretty darn protective of our little princess. He made it clear  that "no residents" were to see her. What a relief!

Kourtney seemed to stabilize through the night when they started her on a medication through the IV called Pantoloc. Unfortunately, her IV fell out during the night and the next option was to put in a Central Line.  This would avoid the need to poke her over and over and over again for bloodwork, IV's as well as any procedures that need to be done.  We have avoided this over the years because she is such a high risk for infection so the chances of the central line (which goes right into the superior vena cava - the heart vein)getting infected are increased, which could cause another set of problems (that I don't want to think about and have to really give to GOD). However, Dr. Courtemanche and I felt it was absolutely necessary to get to the bottom of this. He felt very uncomfortable sending her home without knowing how approximately one cup of blood got lost in only 9 days post transfusion.

So as she was taken down to interventional radiology to get the PIC line (central line in) we both felt unsettled.  I really didn't understand what was involved. Kourtney senses when I am uneasy, and played off my fear, and broke down when she was going to get up on the table. I told her she didn't have to do this but she would continue to feel crappy and the only way to make her better was to get this line in so we could find out what is making her so unwell.  With that she marched up the table, and continued to be  miserable, that is until Dr. Cassidy walked in. We met him 9 days ago when Kourtney had her last transfusion.  This man with the strong Scottish accent put Kourtney's IV in, was so kind and gentle with Kourtney, as well he is a "wee bit handsome".  Kourtney in her misery didn't see him come in and when I said, "Kourtney look who is here!", Kourtney looked up and smiled. You know that smile when you know she is truly happy . . . or being totally deceitful. Those of you who know her well, you know the look.  Everyone in the room saw the connection. Dr. Cassidy took her little hand and held it talked her through putting the mask on and he held her arm as she was getting her line in. I came in to help with the dressing and thanked him for coming in. He said, "No it is my pleasure. For everything that she goes through she is so pleasant."

Now she has the line in we have learned a lot about what is going on in her body. It is amazing that blood work provides so much information about what is going on. We know her liver and kidneys are OK (Dr. Courtemanche made sure I knew this cause he knows that I was a dialysis nurse forever and knew it would easy my mind).

One possible explanation though came up on her blood test. She had a positive Coombs test which could cause these symptoms, however, she did not have blood in her urine,  just in her stool. She could have had a delayed reaction to the blood transfusion, and there was an antibody in her blood that she was rejecting which could cause hemolysis (or breakdown of red blood cells-causing her hemoglobin to be low)   I know its confusing . . .

But her stool also tested positive for "occult" blood which means there is bleeding higher up. So at this moment we are still waiting for arrangements to be made for a scope of her stomach and her small bowel. While we are here Kourtney and I both feel that a dilatation of her esophagus may be a good thing as she is experiencing a lot of problems swallowing lately (not as bad as before but it is getting worse).

What I find amazing is how Dr. Courtemanche and Dr. Davis have supported us and been here everyday to see how she is doing. The internal specialist is new to the hospital, and we have found him to be agreeable and quite lovely as well. He has respected what I have told him and acknowledges that I know Kourtney's history the best. As long as they listen to Mama, there is no Mama Bear!

The most random thing that occurred was Kourtney's "old" teacher's aide, Tammy, was flying from Calgary to Vancouver the same day and same hour Kourtney was admitted. The Vancouver airport is close to the hospital so Todd was able to pick her up. Kourtney introduced her to the nurses as her Grandma, who then commented on what a young grandma Kourtney had. It was quite amusing. It made us realize how much more we missed her.

We have had many special friends come out to visit and have made some new ones.

We are still here until they can arrange the scope and dilatation together. Although its not the greatest place to be it has eased my mind greatly knowing that she is getting the best care.