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.