Well, we were able to take Kaelyn home on Saturday. She absolutely loved being home. She ran around and played with everything and everyone! But, unfortunately, on Sunday she was having some pain and swelling on her right side. So, we took her to the ER and they admitted us. Atleast we were able to have 24 hours of fun at home. My parents were visiting from Utah over the weekend, so it was nice for them to be able to see her out of the hospital, even though it was for a short time.

They are going to let us go home today though. Which was a suprise to me! I am very excited. They think that her pain and swelling was from her biliary drain backing up some. We have it clamped so it was exclusively draining internally. But now we have a bag on again so it will drain both internally and externally. It has seemed to solve the problem for now. We are going to try and clamp it off again on Sunday and then come in on Monday for a clinic visit with the transplant docs. I am sure we will discuss a more permanent option at that time. We may have to place another stendt. But we will see.

We are still trying to plan our Disney trip for the first week in April. We had to hold off on getting tickets becuase they wouldn't insure our trip while Kaelyn was in the hospital, so hopefully today we will be able to book our trip!

We love you all!

Angie

One biliary drain out!

Today they took out the old biliary tube. It only took them about 15 minutes and she did not need any sedation. So far so good, no evidence of any bacteremia like last time. I was a little nervous when they took her to do the procedure, but all of the docs assured me that it would most likely not happen because she is on so many IV antibiotics. I think she will be fine. It will be nice not having two drains to worry about. Tomorrow I think we will clamp off the external part of the new drain and see if it will just drain exclusively internally. That is the goal. If it works, we won't need to have the big bag hanging off of her any more. Even though she does look awfully cute carrying it around in her cure little Hello Kitty pink backpack!

Well, the meeting with all of the docs yesterday went well. I think we cleared up a bunch of our questions. The liver is in good shape to handle the chemo, we really shouldn't have any problems with the livers function. And we decided for sure to start the Irinotecan chemotherapy on the 11th of April. It will be pretty intense, more than I thought. She will be on for 5 days, have two days off, on for 5 more days and then have two weeks off. We will go through 2 courses of this and then rescan and check her AFP. If her tumors look responsive to the treatment we will continue, if they are not, we will reconsider treatment. There are other chemos we can try, but they produce much worse side effects and require a whole lot more time in the hospital. But we will just pray that the Irinotecan works.

We are thinking we will go to Disneyland the first week in April. That will be so fun for us all I think! We are all very excited. It will be good to enjoy our children well and happy together.

Love to all,

Angie

Out of the ICU!

Kaelyn was transferred out of the ICU yesterday about 3:30pm. We are now back on the surgical unit in a much quieter environment. She is resting comfortably and all of her vitals are stable and well. She is on a whole lot of drugs so she is very sleepy. We are weaning her off of the sedation and IV pain meds today, so hopefully tomorrow she will be more lively and herself.

We are clamping off the old drain to see if the new drain is working properly. If it is, I think they will take out the old drain tomorrow. The docs all assure me that there is little chance of her going into septic shock again from this procedure because she is on three different IV antibiotics. I must admit that I am a little nervous about them going in there again. But I also trust Dr. Healey and I know that he knows what he is doing. Taking the drain out is very simple, they will do it in her room, so really it should be fine.

This afternoon we are meeting with both the oncology people and the liver people together. I am very excited about this, so we can get things straight on her treatment and the effects on the liver. So, I will let you know the outcome of that meeting soon.

Love you,

Angie

Day 4 in the ICU

Kaelyn is doing much better today. We think that she will be able to be extubated (breathing tube taken out) today. They have just about weaned her completely off of her blood pressure medicine and she hasn't had a fever in a couple of days. It will be so good to be able to have her talk and be awake again. They have had to keep her pretty well sedated while the tube has been in.

She will probably stay in the ICU 1 or 2 more days for observation, to make sure she is stable. Then we will be transfered back to the surgical unit for a few more days. Hopefully by the end of next week we will be able to go home.

After Kaelyn has had some time to recover, we have decided that we are going to take a short family trip to Disneyland! We are getting very excited, Jacob especially. The hospital has very generously offered to pay for some of our expenses like park tickets and our hotel stay. We were pretty shocked when our social worker came in and gave us that news! We are very thankful.

And then, when we get back, we will start Kaelyn's chemotherapy.

Kaelyn's has definitely been blessed with angels surrounding her these past few days. I think the reason she is getting better is that everyone acted so quickly, and I believe that we were all prompted to do so by our loving Father in Heaven. He is watching over us and know of Kaelyn's suffering, and I know that He is blessing her and our family.

Love to all,

Angie

Kaelyn in the ICU

First of all, Kaelyn's stent placement (internal drain) was a success. They were able to get through from the bile ducts to the intestine. Unfortunately, when she came back from recovery she had a fever of 104.5 and very low blood pressure. She was rushed into the ICU and started on blood pressure medications among other things. She also was intubated (breathing tube placed) to help alleviate her body of any unneccessary stress. The docs think that she has a blood infection called bacteremia and this caused her to go into septic shock. They also think the infection was caused by the stent placement. We think that there was some bacteria in her bile that was stirred up with the procedure and it entered the blood stream. She is currently on 3 antibiotics that will help her fight the infection. She also received two units of blood last night. She is currently stablized with the medication, but still having a fever of around 101. We have tried to start to wean her from the meds, but as we do this her blood pressure starts to drop. The ICU Docs seem to think that she will need to remain in the ICU for atleast 7 days.

It was a terrifying day yesterday, but today is better.

Love,

Angie