The Surgery

THE SURGERY

Kourtney had a balloon dilatation done on her esophagus. It is done under radiology. She had a contrast dye put into her esophagus and then under x ray a catheter was passed from her mouth into her esophagus. On the catheter there is a balloon that is injected with air. When they see the narrowing they fill the catheter up with air and it creates an opening where the narrowing is. The radiologist said the narrowing was quite small which made it easy to get but significant enough to cause the problems she was having.

This is done under a general anesthetic. She had quite a long wait in the waiting room before the surgery, so when it was time for her to go she was completely frightened. When they were going to put the mask on to gas her she freaked out like I had never seen her do. I had to hold her and they managed to knock her out with the gas. I ran back to her room in tears and ready to cry my heart out in the room when I ran into a girl who I met in the hallway the day before. She said she had been praying for us and gave me a hug. Her son was in the hospital being investigated for seizures. We really felt that we were led to each other in the hospital and so thankful she was there when I was ready to lose it.

Meanwhile while all this is happening our realtor was putting an offer on the house with the swimming pool. The offer got accepted!! We will know next week if we get it as it was subject to the owners of the house finding a place by Sunday. Pray that this time it will go through.

Now we are home. Kourtney is in quite a lot of pain and irritable. (do you blame her?) She can swallow better now and noticed a instant difference after the surgery. My head is spinning as there has been so much happening in the last week and now it is time to process it.

We also saw many different doctors in the hospital and feel the 6 nights we stayed in there were worthwhile and necessary.

In the hospital I had a lot of thinking to do. I will never understand the hand of God, The fact that God has entrusted Kourtney to Todd and I is overwhelming. Everyone she met in the hospital was amazed at her happy little personality and brave little spirit. I can't help feel honored that this fragile-bodied girl is ours and how she impacts so many lives. It is sometimes very easy to lose perspective especially after sleepless nights of watching a child in pain. But being through this last ordeal has made me aware once again of the sovereignty of God.

Thank- you so much for standing behind us as our army in prayer.

Love,

Janelle

Bing, Bang, Boom !!!

It has been awhile since I e-mailed. Right now I am at Children’s Hospital with Kourtney waiting for surgery on her esophagus. We have been here for 4 days. The last month has been full of surprises and in this last week we finally got some answers.

As you know we have been trying to sell our house. We had two accepted offers go sideways due to lack of financing. Todd’s class this year has been a handful and he has been looking for a change for next year. Kourtney has been doing fairly well during the stress but she started having issues with swallowing at night.

Last Monday, May 22 I said to Todd and the realtor, “I have a feeling it is going to be a good week.” I had to be optimistic; it really couldn’t get any worse.

The Bing Bang Boom came this week.

BING - THE KOURTNEY

Kourtney started on antibiotics for a mild skin infection about 1 month ago. The antibiotics caused a heartburn effect and she began having problems swallowing at night. The pain of the heartburn made it difficult to swallow her saliva. Some nights it took her 3 hours to clear. Needless to say Todd and I were up with her through the night. Even if we took turns we still felt tormented by watching our little girl gag at night. We decreased her antibiotic dose in attempt to reduce the heartburn. It helped but did not take care of the infection. We had a week of very hot weather and the infection continued to grow on her skin. Then she got a cold which made her skin worse, and with the increase in mucous she started having problems swallowing at night. The blistering on her skin multiplied and so did the infection. I knew she needed more antibiotics, yet I knew that her esophagus couldn’t handle the irritation.

Tired and confused I went to my family Dr. He suggested I phone the dermatologist. He told me I was at my breaking point and I needed to get Kourtney admitted into the hospital. The dermatologist was away, so I emailed the plastic surgeon Kourtney sees on a regular basis. He told me to bring her into Emergency and he would take care of her.

He admitted her on Wednesday, put her on IV antibiotics, arranged for a barium swallow, and scheduled her for a dilatation on her esophagus for Monday. We are in a private room. Kourtney has sat very still and is enjoying her life of watching TV, DVD’s, reading, and playing with her Nintendo DS. I have looked at this as being a positive break from the everyday routine and the house selling.

BANG - THE JOB

Todd has been wanting a change from grade 4, the daily grind of planning the day and marking, and of course report cards. This week the principal asked him if he wanted to be the school librarian and teach music and Phys Ed to the primary grades. This means a lot less stress. (I think that requires a cardigan, tweed pants, and bow tie) I will have to go shopping when I get out of here!!! I would have done that anyways.

BOOM - THE HOUSE

This week we had about 8 showings. Probably a good thing I was in the hospital with Kourtney. On Friday our realtor called and said he had an offer on our house (3 times lucky I thought), but he said the people who had an offer on our house a week ago had just been approved for a mortgage. They are friends of ours, so we chose to sell the house to them. OUR HOUSE SOLD FINALLY!!! Our realtors refer to themselves as “realtors for life.” We thought we gave them a “life long” listing as they have never had two deals go sideways. We are still deciding about the house with the swimming pool as we believe the price is still negotiable. We have till August 3rd.

MY FEELING WAS RIGHT . . . It has been a good week. Only by your prayers we continue to get through.

WE will keep you updated about the purchase of our new home and the results of Kourtney’s surgery!!

Love,

Janelle

Harold's Heart

Hi there. I am back from Calgary after spending 4 days there with my dad and mom. I am happy to report that my dad is doing well and will be discharged today from the hospital. I want to write down the details while they are still fresh in my mind. I don't expect everyone to read this, but for you that have questions, here I go.

My mom and dad drove to Calgary to help Murray with the paper work for his new house in Okotoks and then were going to fly from the Calgary to come to Abbotsford to visit my family.

My parents were through security already when he started having chest pain. My mom was apprehensive to alert 911 until she saw my dad sweating. Then she knew that there was something more going on. When she called for help a Westjet rep came alongside her and explained everything to her and stayed with my mom until they left in the ambulance for the hospital. My mom said that the Westjet employee was reassuring and calming, just like on the TV commercial. They took him to the Peter Lougheed hospital first. Because his chest pain intensified and was unrelieved by Oxygen and Nitro he was transferred him to Foothills hospital. Foothills hospital is one of the leading Cardiac hospitals in Canada.

My dad had two blockages (plaque, bloodclot as we found out the medical terms are the same). He had an angiogram (they took a picture of his heart by injecting him with dye and then x-raying him) which revealed two of his cornary arteries (the vessels that give blood to the heart) were blocked. One vessel was 100 per cent blocked and the other one 80 percent. The two vessels were on the left side of his heart, so they could only clear one at a time. Immediately they did an angioplasty on the vessel that was 100 percent blocked. They put in a stint to keep the vessel from collapsing and from forming further plaque buildup. My dad was awake during the procedure and said that the chest pain was relieved instantly. My dad stayed in CICU (Cardiac Intensive Care Unit) overnight and later was moved to a telemetry unit where they monitored him for 2 days. Here he waited patiently for the second angioplasty. Yesterday, he had a second angioplasty. I have heard it wasn't completely cleared out but the medication (Plavix) will take care of the rest.

The damage to his heart was minimal. The ECG showed no changes from the time the chest pain started to after he was monitored on the ward. (They look for changes in the ECG to see if a person is having a heart attack.) My dad's only sign was chest pain and on the first assessments made by the ER doctors they thought he might be having hernia pain, but the medical team listened to what dad was saying. A heart attack is damage to the heart muscle and when the heart muscle is damaged it releases a residue into the blood called Triponin. My dad had 3 tripinon levels drawn over 24 hours. The levels were slightly elevated which indicated damage to the heart muscle, what we call a heart attack, or as the medical staff refers, a myocardial infarction (MI).

My dad will be on medications now to help his heart muscle contract more easily, since there has been damage and the heart muscle is not as effective. He will also take Plavix for a prescribed amount of time to decrease the amount of buildup in his vessels. He will also start on a cholesterol medication. His cholesterol has never been elevated but they still really don't know what the norm is for everyone. He will also carry nitroglycerin with him. If he has chest pain in the future he needs to take it. If it relieves the chestpain he has stable angina and if it doesn't relieve the pain it is unstable angina and he needs to go to Emergency.

My dad had a stress test 3 years ago that he passed with flying colours. He has never had high blood pressure. He has had some twinges of chest pain when he was exercising but usually was relieved by the cold air deep breathing.

My dad's only factor for having a heart attack is stress. He will get onto a cardiac program and learn some tips in managing his stress, returning to exercise and changing his diet.

I was sooooo proud of my dad. The nurses and doctors loved him as he is gentle and kind. His understanding of the procedures and medications were profound. When he was getting his IV out he bled a lot. The nurse said, "I can't beleive how much you are bleeding." My dad said, "Just remember I am getting Heparin." I was so proud of him that he understood the side effects of the medications.

My mom's faith remained stellar through all of this and felt God's hand tracing the whole situation. This next little while will be a learning curve for her as she learns about medications as well as signs and symptoms to watch for if dad has heart problems again. Plus my dad won't be able to drive for a month so she will be in charge of the driving.

They will be with Murray and Carlin for a few days in Okotoks and will get back to Regina either by flying or driving.

I have to admit that I actually enjoyed my time in Calgary. We had a mini family reunion (5 out of the 6 were there). My dad's grin just got bigger and bigger as each one of us walked in to the CICU. I haven't spent that much alone time with my parents in years. I felt privileged to go and support my family and learn as much as I could while I was there.

Todd and the girls survived, although very disappointed that they couldn't see their grandparents. We have a lot to be thankful for. It is a huge wakeup call to live everyday to the fullest as you never know when things are going to change.

Thanks for your prayers. I left Kourtney for 4 nights and she did great. Love to you all.

Janelle

January Update 2006

Since I emailed you last things have gotten back to normal. Unfortunately though Kourtney has not been sleeping well over the holidays. So . . . once again we are feeling sleep deprived.

On Monday night Todd and decided to medicate Kourtney so that we could all have a good night sleep. The first dose did nothing and Kourtney had a difficult time going to sleep. The second dose had an adverse reaction and made her restless through the night. We had to be up early for a 0930 appointment in Vancouver to see the plastic surgeon. I was so tired and frustrated as, in her restless sleep, Kourtney made a lot of new blisters. I was rather short with Kourtney in the morning and Kourtney was edgy also.

On the way there she was quiet and rested with Larissa (our nurse) at her side. There were little or no traffic problems, so the anticipated 1 1/2 hour trip took only 1 hour and 5 minutes.

We saw the plastic surgeon and he was quite pleased with the outcome of the surgery. Kourtney said little during the visit. I inquired about scheduling a surgery for 2006 just because the wait list is so long. The plastic surgeon asked Kourtney, " When do you want your surgery?" Kourtney responded, "In 500 years." We went on to talk about other things. When the surgeon was leaving he asked Kourtney, "Do you have anything else to say?" Kourtney said, "No." But then she stopped, looked at me, and said, "Maybe I do. Could you schedule a head transplant for my mom?" I was so lucky I had been to the bathroom because I probably would have dribbled I was laughing so hard. I could not believe the wit and eloquence that came with it all at the same time. The surgeon told Kourtney that he would have to send me to Paris for that.

I share that story because for all the tragedy Kourtney has endured, her delightful personality comes out so often. Her teachers say that she picks up the humour, that most other children don't understand. The surgeon said that the EB gene is next to the exceptional character gene and he has always impressed with the quality of character of people with EB. I am alway amazed by her happy disposition and how she likes to socialize.

Thanks for your many words of encouragement and support. We feel comforted to know we have a team behind us in prayer.

Janelle

December Surgery Reports

December 18

Tomorrow at 1250 Kourtney is scheduled for Surgery. This has been a bit of a rough week as she has had some esophagus problems, so since Tuesday nite we have had sleepless nites plus a full week of Christmas performances, visiting with friends plus a big party for Kourtney just to celebrate her. We had 10 of her friends here plus at least 10 other very significant people in our lives including her teacher from last year.

Kourtney will be having surgery on both hands to release the webbing and straighen them out, also the plastic surgeon will make the opening of her mouth wider by reasing the skin at the corners of her mouth (also the called comisures).

Pray for us! We will stay overnight and than will come home. I am looking forward to Tuesday when we bring her home. I have my Christmas shopping done, Todd will be home and we can just enjoy being together in our beautiful home. Doesn't that sound nice in the midst of the hustle and bustle of Christmas ? The pain should be too bad as she will be bandaged up.

I just wanted to update you also since my last email. If you remember we were waiting to see what was going to happen with the nurse that was on with Kourtney when she fell. As it turned out the nurse took herself off the job, so Kourtney was going to school with the other nurse only 3 days a week.

The most amazing part is our nurse that we had for 4 years and left to go to Europe for 9 months is back. She is more than willing to go to school with Kourtney!!! She will also work in the home also, so that will give me abit of a break. Will give you more details in upcoming emails.

Thanks for all your love and support.

December 19

Thanks for praying!!

It was totally amazing turning on the computer this morning and seeing so many e-mails from friends and family.

Kourtney woke up and was very anxious about the surgery. She started retching because she was so nervous. I even tried cheering her up by doing my “shopping cart” dance to Boney M’s Hark the Herald Angels Sing, but it didn’t seem to work. I won’t explain it because the visual would just be a little much. I phoned the surgeon and asked if we could give her something to settle her before the operation. I had some Ativan on hand and that settled her nicely until we started getting close to the hospital. It was then she threw up.

The anaesthetist that was on was kind and compassionate. After her surgery he stated that he was happy to look after Kourtney’s special needs and was thankful that things went well for her.

So . . . after 3 1/2 hours of surgery, Kourtney has piano fingers. No pins in her fingers to keep them straight! Her mouth is wide and we can actually see her beautiful teeth. The recovery will be long but I also know that this will really enhance her life and her ability to do things.

We are in a private room in the hospital and expecting to leave tomorrow morning. Kourtney is sleeping soundly right now. Her hands are all bandaged up and her lips are swollen but even in her sleep she looks content. The relief must be great for her, as she was under incredible stress this past week. Please pray for a speedy recovery.

Well, Merry Christmas to all . . . just think during the hustle and bustle of this week the Kujawa 4 will be hanging out at home, watching ELF, The Grinch and playing Disney Monopoly.

Shaelyn hung out with Dave and Bev today. She has been very concerned for Kourtney’s health. We are so thankful that we have family so close and also willing to help us out in every capacity.

Thanks for all your prayers and e-mails. Todd and I found it amusing that we got some alone time together with no kids. We had a nice cafeteria lunch and treated ourselves to a Starbucks. WOW a date!!!!

I am planning to send some Christmas pictures out but we will see. Forgive us if we don’t get around to it.

Love with a ton of relief,

Janelle and Todd

December 29

To all our friends,

Just to let you know that Kourtney has done extremely well since the surgery. We did the first dressing change on boxing day and were surprised how calm she is. Her hands look great and so does her mouth. She has a lot more freedom moving her mouth and also her fingers now also.

Shaelyn was sick for 3 days with high fevers. She is now on the mend also. Thanks for your continued prayers. We are anticipating a wonderful 2006. Love to hear from you all.

Janelle