Kaelyn doing much better

So Kaelyn was transferred out of the ICU last night around 10 pm to the surgical unit. I was so glad that we didn't have to spend the night in the noisey bright ICU. She is doing really well today. We have been running around, playing and just having as much fun as you can in the hospital. She is going to have an ultrasound today and her biliary drain changed tomorrow. Her blood cultures did grow some positive bacteria, which was expected from the septic shock she went through yesterday. So we are just treating that with IV antiobotics. I'm hoping we get to go home by the weekend.


Love,

Angie

Kaelyn in ICU

Last night Kaelyn spiked a fever around 11 pm accompanied with horrible tummy pain. So we brought her into the ER. As always, by the time we got to the hospital her fever had gone down and she was feeling a little bit better. So we waited for labs to come back and decide what to do. Her liver numbers are all okay still, but her white cell count was fairly elevated and she had a band (immature cells that point to infection) count of 75% which is really high. So we were just about on our way to a room and the ER nurse wanted to do one more set of vitals (thank goodness). Kaelyn's blood pressure was really low, like 50/20 normal is around 110/80 for her. So we had the swarm of ER docs, nurses and PICU fellows in our room watching her for about 2 hours while they pumped her full of fluids and antibiotics and started a dopamine (blood pressure med) drip. Finally her pressures started to come up. She was transfered into the ICU. Right now she is doing so much better. She is totally off of the dopamine and her pressures are stable. She was in septic shock. Sound familiar? She went through this the very first time she had her biliary drain placed. Only that time was much more serious. But when they mentioned that this was what was happening my heart dropped. It was so scarry the first time. Thank heavens that it was not quite as serious this time because we caught it earlier.

She's sleeping right now and we will hopefully be transferred out of the ICU tomorrow. What a day...

CT scan results

Hip Hip Hurray!!! Kaelyn is still cancer free! We braved the snow storm that we had here and went into to Children's for her scan (I still have that Utah blood flowing through me - bring on the snow!). It went wonderfully well. She did not need anestesia which makes it so much easier on her. She is such a big girl. Her oncologist, Dr. Thomson was very pleased with the results. There are three areas in her lungs that they have been watching and all of them are either smaller or unchanged with means that they are scar tissue of some kind. Dr. Thomson also said that the greatest chance of recurrence is within the first year post chemo. And Kaelyn has just past her year mark with no sign of recurrence! There is always a chance of recurrence with Hepatoblastoma, but atleast it is less. I am just bursting! It is really very exciting. She only has to go get CT Scans every six months now and AFP's drawn every three (unless there are liver issues).

I love posting good news! Hope you all had a great Thanksgiving, we sure did.

Love,
Angie

Good news...

Kaelyn is doing so good! Her docs have given her the okay to start preschool! I think I will start her on Monday. She is so excited. It will be so good for her to do some normal three year old things and play with different kids. They also tapered down her prednisone (steroid) to every other day. Which is wonderful! The only issue that we have is with Bob, her JP drain. Dr. Healey thinks that maybe because we have had it to suction that there has been too much negetive pressure not allowing the little leak to heal. So, we have taken off the suction and will see what happens. So far, Bob is still draining but it will take time for the leak to heal.

Kaelyn does have a rountine CT scan and oncology clinic visit scheduled for the end of this month. We have to do this every three months. She also has a routine biliary drain change scheduled for the beginning of December. Hopefully all of this will lead up to a very uneventful, blissfully simple holiday season. If I don't post again before next week, everyone has a wonderful Thanksgiving!

Love,

Angie

PS: I finally posted some pics of the kids from halloween. The other is one that the hospital is using in one of there mailer add campains (my daughter, the super model!)

No news is good news!

I just wanted to post and let you all know that Kaelyn has been doing really well. It has been so fun watching her play while she feels good. We have had a really good two weeks. She does still have the JP drain, and it is still outputting some, but she sure doesn't let that slow her down! She calls it "Bob". I kept saying that we needed to go empty the bulb (the JP drain has a little bulb on the end to collect the fluid) and one day Kaelyn asked me, "mommy why is his name Bob?"! Ever since then the JP drain has been our friend Bob. It's very cute!

So I finally got the kids in for pictures the other day! Now I can replace the one I have on my wall with Kaelyn beautifully bald with an NG tube in her nose. The kids did great and we got some really cute pictures. I won't be getting them until December but it was all worth it. We had to brave the flood waters all around us to get to the photo place. It's been crazy wet around here. We went to the river a couple of days ago and it was so high and turbulent. They had all of the roads closed any where near the river. On wednesday Wade couldn't even get out of town to get to work! Our house is fine, but there are others that we know that have had some flooding. It's been very wet...

Anyway, all is well. Kaelyn goes in on Tuesday for her transplant clinic appointment and I am sure we will be talking about "Bob".

Angie