RESTING

Kourtney had the best sleep she has ever had in a long time. She is still sleeping. I know she needs the rest.

Yesterday, Kourtney and I spent time alone with the psychologist. We are working on ways to make Kourtney's baths easier. The other day she observed the dressing change so she had a huge understanding how difficult it was for her and for me as a mom.

After that Kourtney and I watched two movies and had a quiet evening.

We also received a letter of apology from the doctor that prescribed the medication that gave Kourtney a violent reaction. I felt that there has been closure to this and now have to put the whole ordeal to rest. We requested a letter of apology, just so that we could feel that she understood how much trauma our whole family faced during this time.

Today I feel a little overwhelmed by everything. I need lots of prayer. I sometimes feel like this load has been mine to carry for so long, everything about Kourtney we have learned through trial and error. Reading my past blogs I have realized that there always has been some kind of obstacle that we have had to tackle over the years. This is the biggest one because we are in the hospital again (Kourtney's longest stay before all this was 9 days when she was 2). The doctors are quite concerned because of the open area on her back that doesn't seem to be healing, and all the other open sores on her body that the infection ravaged through. Really, truth be told, we don't meet the criteria for being admitted, but because one doctor finally took us on we are are here, and I feel I don't have to do this alone. Our plastic surgeon is quite willing to play quarterback for us and help us get through this. I feel relieved that I am not on my own with this any more. In 11 years this is the first time that I had to ask for expert advice, most of the time I have gone through these crisis's on my own and have told the doctors what Kourtney needs. I remember when Kourtney was first born I brought her home from the hospital, I just had this sick feeling about the responsibility of caring for a child with high needs. I don't think anything can ever prepare yourself for watching your child suffer. The psychologist says I am detached. . . yep, I probably am, but it is a defense mechanism. Yesterday, I just laid with Kourtney on her bed and watched movies, she wanted me right beside her. I think that is why she slept so well, she needed me just to be her mommy not her nurse. It was nice.

Oh dear, after all this rambling, she is still sleeping. I am not going to disturb her.

I still haven't been able to apply for employment insurance yet because my sick time bank has not been emptied. I have been phoning my manager over the last two weeks and have not heard from her. Today I phoned the old manager and told her I needed this solved so I can get paid. Thankfully, I was able to talk directly to her she was going to resolve this. Please pray that I get paid my sick time and than I can get paid through EI (which will take 28 days). Just another thing to irk me, especially when finances are the one area that we have done well with. Just another control issue that I have to leave with the Lord.

Sure looking forward to seeing my bro tomorrow and Shaelyn.....she is going to take two days off of school and spend time with me here and at the hotel. I do believe Madagascar comes out on Friday. We are going to that with Kourtney!!!!

I love getting emails!!!!

Post Transfusion

Last night Kourtney got her blood transfusion. After 3 missed IV starts, she was fit to be tied by the end. She was very restless last night as she was getting it and woke up very sweaty. Today will be a quieter day. The psychologist will talk to Kourtney and I individually today. The dressing changes are being done only every 3 days. It really is nice not having to face that mountain every day.

We can not believe that last February-July, Kourtney did not have to wear any dressings at all. Now almost every area requires something. This infection has outsmarted everyone. I am just hoping and praying that we will find the a good plan to outsmart this bug. Eventually we are told that it will simply disappear. We are praying that it does.

We are using the honey dressings. They are soothing and healing. Just pray that they continue to work really well. It is just going to be a long couple of weeks.


Janelle

Decision 08....

It ended up that I didn't go to the meeting...that is ok though. I am happy though that the right people were there, pediatrician, plastic surgeon, dermatologist, and hematologist. I knew they were all on the same page. What they decided.....was.....

- take a close look at Kourtney's nutrition via bloodwork, to make sure she is getting adequate nutrition.

- blood transfusion, to bring up her Hgb and help her heal.

- Stay until the wound on her back heals up (yeash....2-3weeks).

- at this point the professionals don't feel she has an infection. Her wounds look clean, but she just has so many of them that we'll have to monitor it to help her heal.

My brother is coming on Wednesday with his girlfriend, they will be staying in seperate rooms(just thought that may need some clarification)  in a hotel in Vancouver. Kourtney is allowed out on passes, so we will be able to shop in Vancouver.....Lululemon here we come.

Two funny things....sense of humour is important at times like these.

First of all daylight savings time. Shae and I stayed in a hotel. I forgot about the change in time, so we are all ready to go and start our day at 0700 am. Shae and I were ready to hit the town and go out for breakfast.  Downtown Vancouver is pretty  dead Sunday  morning and to make matters worse most of the stores did not open until 1100. You could tell that the two of us were from the country (Abbotsford). Both of us somehow forgot to bring socks, both of us had blisters on our feet, so we had to buy socks and bandages. I felt like a street person with her daughter on Robson Street putting socks on. We both felt like we were walking on clouds after that.  That was a long morning for the two of us.

Second of all my dad my sweet 71 year old dad is coming out to spend time with us in two weeks. Now picture this. He can only stay for 8 days instead of 10 because he has to be back for his mom's, yes his mom's, 100th birthday. It gets better......my grandpa is 105 and they have been married for 78 years (not sure, it may be more). They just went in the nursing home last year.

Ok maybe not that funny. I thought it was.

Some things that may help pass the time are....You Tube Posts. Kourtney loves The Church Office. We have internet access in our room.

Anyone reading a good book, and want to lend it to me?

Prayer requests......

Healing, rest and comfort for Kourtney and for myself.

Todd and Shaelyn, as they try to make do without Kourtney and I around.

That Kourtney's back heals up well, and that she makes a full recovery. 

Janelle

They will be giving her the blood transfusion in the next couple of hours. Pray that it all goes well.

Kourtney Update 2

We are still at Children's. Just to update you......

As of yet Kourtney has not been transfused. Friday was a very frustrating day as there was a lot of miscommunication between the residents (the student doctors) and the doctors that I spoke with to get Kourtney into the hospital. Decisions were being made based on lack of knowledge and experience with  Kourtney's chronic illness. I had a meltdown and sent these poor residents out of the room with their tails between their legs..

To make a long story short. We are having a multidisciplinary meeting tomorrow to see how we can best treat Kourtney. Keep praying.

Kourtney Update 1

I am so glad we are here at Children's, I feel a sense of relief knowing that this time we are in great hands. So here is the scoop. Kourtney's Hemoglobin levels are extremely low (Hemoglobin carries Red Blood Cells to your body, low levels make you tired, heart palpataions and decreased resistance to infections). So...the solution is iron supplements, Kourtney has been on iron on the maximum dose of iron supplements, not working because iron can't be absorbed when there is an infection. THE VISCIOUS CYCLE. So they will look at her blood work tomorrow, and prepare to do a blood transfusion with IV iron which will be better absorbed with the blood. This should make her feel more like my perky Kourtney, plus help bring healing to her body. I really would love to see my perky Kourtney back. I know a blood transfusion......icky but as a dialysis nurse I have seen the benefits more than the negatives.

Everyone is quite excited about the honey dressings, tomorrow we take some of them off. I peeked tonight, wow what a stench but underneath was some amazing healed skin, please pray that her back will show the same amount of healing.

Specific prayer requests would be.......Peace in my heart. Peace for Kourtney and healing. Thanks for taking time to read this.

Toodles, Janelle