Inpatient after almost a year and a half

So, I find myself in Primary Children's hospital ICS (Immunocompromised) Unit with sweet Kaelyn as an inpatient. It is a little surreal. We have gone almost a year and a half without having to "live" in the hospital. Normal is just a word...but I almost felt like we had once again attained it.

Kaelyn has been generally ill the past 10 days. Cold symptoms and such, but on Friday night, while we were visiting G-ma and G-pa Perry after Thanksgiving, she spiked a fever. The next morning I took her to the Urgent Care Clinic in Logan. They said, it's just a virus...I could not convince them otherwise. But she was doing better that day, so I went along with it. Mommy-senses told me otherwise. That night, she once again spiked a fever. But not as high, so I though she was getting better and she did well the rest of the day. Sunday night we went and got labs drawn, normal every two week labs. That night, once again - fevers. So I called the Liver doc and told them what was going on. They called me back after reviewing her labs and said that her liver numbers were up again and she was pretty dehydrated so they thought it best to admit her. I packed a bag and off we went. This was Monday afternoon. Monday evening and all through the night she fevered almost constantly. Her high was 105.3. She has not had a fever that high since she went into septic shock in Seattle. I was never so happy to be in the hospital. Today the docs are trying to figure out what is going on. Virus, liver, bacteria in the blood, appendicitis? The consensus for now is a possible abscess in her liver where a bile duct may not be draining properly or a bad virus. I hope it is the latter. We are going to do a CT Scan either today or tomorrow to check her liver.

Right now, she is sleeping and not fevering. They have started her on IV antibiotics and that seems to be helping. I will update when I find out more info.

As a side note...our Thanksgiving was great. We were able to spend it with my parents at their home. I have not been able to do that in many years! It was fun reminiscing with my mom and sister about how our favorite job on Thanksgiving as kids was to put the Cheese Whiz on the Celery. Isn't funny what you remember! I hope I can help my kids make those kind of fun, silly memories to think back on. Then we went up to Logan to spend time with Wade's parents. We helped them pick out a Christmas tree and decorate it. The kids really had a blast. Then when we got home we decorated our tree. Kaelyn was so proud that she was the one the spent the most time decorating. Jacob got a little tired (bored) and let her do most of it.

Time is precious and fleeting. Enjoy what you have, you may not have it tomorrow. If I have learned anything from life as Kaelyn's mom, it is to enjoy your time, love your family, don't worry about the little things. Take each moment, a moment at a time. As Elder Wirthlin said, in his last General Conference talk, before he passed away, "Come what may, and love it."

love,
Angie

Day to day

We have been getting Kaelyn's labs done once a week lately. Last week her liver numbers looked a lot better. We will see what this weeks look like either today or tomorrow. I am hoping that if they are back to normal that we can take her off of her prednisone. She even hates what she feels like on steroids. She came up to me the other day and told me that they make her feel mad and sad and happy all at once and it gets confusing. Poor thing! She has also been sick this week. Since we had to triple her immunosuppression she has been catching everything that goes around. Hopefully we will be able to taper that back a little too.

The kids are so excited for Halloween. Kaelyn is going to be a black cat and Jacob is going to be a vampire. Should be a blast! As soon as I find my camera (ugg...can't find it since I cleaned last....)I will post some more pics!

Love,

Angie

A little rejection anyone?

So, this past week has been a little crazy. We went in on Monday for Kaelyn's routine tri-monthly transplant clinic. Everything was going really well, until labs. Her liver functions were up, way up. So we scheduled her for a liver biopsy the next day. Our 1 hour clinic visit ended up a 5 hour clinic visit with us coming back first thing (6 am) the next morning. She was really nervous for her "surgery". Kaelyn told me that she doesn't remember having surgeries in the past and she was really scared. She said that she didn't want to have a surgery for 1000 years. It was really heart saddening. When she came out of the biopsy she asked me if she had her surgery yet, so I guess it all went well. The results are, that she is in mild rejection. We think that this all came about from her many colds in the past month. Her immune system bump-stared and started to go after her liver. She is on Prednisone (Steroids) and we upped her immunosuppression meds. Kaelyn on Steroids is not a pretty picture. She has many, many mood swings and is impossible to get to bed at night. Luckily today was her last high dose and she goes to a maintenance dose tomorrow. If her labs look better tomorrow than we will start to wean her off. We caught this quick, so I don't think that there will be any lasting effects. She will be fine and soon, steroid free (yeah for all of us!).

It's always a roller coaster, isn't it....

Love ya,

Angie

Kindergarten and 3rd grade

I kept meaning to post about Jacob and Kaelyn's first day of school, but then get distracted. So here is my attempt at finishing that goal!

Jacob started third, yup that's what I said, third grade this year! Argh! I can't believe that I have a 3rd grader. The first day of school was on his 8th birthday this year. Poor kid...but I brought doughnuts to class that day and his teacher let him go home early as her birthday present. I don't think it turned out to be too bad of a day. He really likes his teacher and has a few friends from last year in his class. Everyday he comes home and tells me that he learned a new letter in cursive today and that he is learning multiplication. He loves school (boy, am I glad!) Another big milestone for Jacob was his baptism into the Church of Jesus Christ of Latterday Saints last saturday. It was quite a special day. He was so excited. I was pretty darn proud of him for making that decision. I think I cried a lot that day! Happy tears though. I am still in shock that I have an eight year old. He should be a toddler!

Kaelyn started Kindergarten this year. She really loves it. It's fun to see her in her way-too-big for her backpack walking to class. She is learning sight words, the prospect of reading is really exciting to her, and having a blast meeting new friends. She,unfortunately, has already missed a few days of school due to illnesses. Her immunosuppression is getting her down while her body gets used to all those new germs. I think things will be better as the year goes by. She is still liver healthy and cancer-free. What a joy!

I have started up school too. I am going to the Utah State University Extension pre-Nursing program here in Tooele. Right now I am taking generals and pre-req's for the course online. I am really enjoying it. I get most of my school work done while the kids are in school. It took me a few days to blow the cobwebs out of my brain and get into the swing of things. I have always loved school, and it feels really good to get out there and work toward my goals.

Wade is working really hard to support me in this and has taken a second job. He has always wanted me to go back to school, but circumstances prevented it until now. What a wonderful husband I have. He is doing all he can to help me succeed. I am so thankful for that. I am also so thankful that we are blessed with health and time to be able to do these things.

A joyful life....

Love,

Angie

Happy ER visit?

Kaelyn, the Olympic Diver, landed in the ER last night. She has loved watching the Olympics, especially the divers. She gets up on her little Dora stool and dives her fancy dive into a pool of blankets with little to no splash. She's been getting tremendous scores from the panel of judges (who may be a little biased, seeings how it is comprised of Mom, Dad and brother...) But last night she was using a prop, a wooden dowel (oops on mom's part). Maybe you can see where I'm going with this. She dived with dowel in hand and the dowel ended up poking her in her eye.....it was not fun. She was bleeding from her eye and she said she couldn't see. So, we rushed her into the ER here in Tooele. The doc looked at her eye through the fancy eye microscope and then dyed her eye yellow and looked at it with a black light. Happily, no cornea damage or scratches. Just a big bruise and some burst blood vessels. Jacob thought all of the scientific stuff was way cool and had Kaelyn interested by the end too. Happily ever after.....

A normal kid ER visit! Wow, we really are progressing into 'normalcy'.

In other news...school starts this week. Jacob will be in third grade and Kaelyn starts Kindergarten next week. I can't believe my eyes when I look at these two. They just grow so fast.

Jacob also has his 8th birthday on thursday, consequently the same day school starts. What a present, the first day of school!

I also added some more pics to the flickr account. It has some from Jacob's birthday party and a few extras.

love,

Angie