Surgery Details

Okay, so I talked with the surgeon yesterday and he explained the procedure to me and why we need to do it so quickly. The bile duct that we had the drains in a few years ago are not draining. The past few years they were draining only a trickle at a time into the common bile duct, but it was enough. Now the place that it was draining from is totally closed off. He said that they will have to make about a 5 or 6 inch incision in her abdomen, go into her liver and create a new duct (his words - boar a hole in her liver - sounds scary) from this undraining bile duct to the common bile duct. Luckily the bile duct that needs to be drained is very large because of all of the back up, I guess this helps. He said that there could definitely be complications, like leakage or if he even nicks or messes with the main portal vein their could be problems. The main portal vein is basically the only blood supply to her liver since her hepatic artery was blocked at transplant. The other complication may be her lungs. Since she has had the flu her lungs are not so strong. She may have to spend some time in the ICU intubated (with a breathing tube). Also, not fun. But he believes that we need to do this surgery as soon as possible. If we wait,like the anesthesiologist want to, the liver will start to deteriorate even more causing more damage to the liver tissue and making it harder to operate. Also if we wait she will most definitely get an infection and have to have drains placed, which is not a fix only a bandaid. And we all now how hard it is to have drains. When she had them the last time, she was in and out of the hospital every two weeks with drain replacements, infections, IV antibiotics and other craziness. Hopefully everything will go well. And we can have our pink, happy little girl back.

She will go into surgery tomorrow morning, I am not sure what time exactly. I will post updates tomorrow.

Angie

Jaundice

So, Kaelyn had labs drawn on Monday of this week. We got a call on Tuesday saying that her liver numbers were significantly elevated. Dr. Book scheduled her for a liver biopsy on Wednesday. She had not been feeling the greatest the previous few days, fever and nausea. She also had been really itchy. Her kindergarten teacher even commented on it when i picked her up on Monday from school. We went in on Wednesday to do the biopsy. After the procedure she felt really crummy. She vomited and spiked a fever. Then she felt like she couldn't breath and her O2 saturation kept falling below normal. So we put her on oxygen and some anti-nausea meds. An X-ray was done to make sure she wasn't bleeding. She wasn't. So what was going on? We were finally admitted to the hospital about 3 am. The next morning when she woke up she was as yellow as a daffodil. Her bilirubin jumped from 0.2 to 5.9 in two days. She also has the flu. Thus the vomiting, fever, and difficulty breathing but that did not explain the rise in bilirubin. So we went in for an ultrasound. This didn't show too much change from the one we did in January. A little narrowing in the common bile duct, and still some dilitation in the interior bile ducts. Her biopsy did not show any rejection, which is good. Dr. Book met with the liver surgeons to discuss Kaelyn. They think that a surgery to connect the bile ducts to the intestines would be the best option for her. I wasn't in the room when the dr's explained it to Wade, so I can't describe the procedure better until I talk to the surgeons. Hopefully I will be able to talk to them today.

I can't believe we are back to this. This happened really fast. She isn't feeling very good. So I need to get back to her. I will try and update as I can.

~Angie

Sorry Everyone!

You know, no news is good news right? I apologize for not updating, well, almost 3 months.

Kaelyn is doing spectacular! So far her liver numbers look great. The ultrasound we had done in January showed inflammation in her bile ducts, but not really any worse then previously. She is feeling good and being an almost 6 year old! Her birthday is next month and she asks me about it almost everyday.

We took a much needed trip to Washington last week. We visited all of our favorite Washington family members. Sorry to those of you we didn't get to see. I wish I could have visited Seattle Children's. We really miss you guys. Kaelyn still asks about Nurse Anne and Nurse Krispy (Christy).

Love you all...don't worry if I don't update, it means that all is well in Kaelyn land and we are busy having a 'normal' life.

Labs and Ultrasound

Kaelyn's Liver functions are actually doing better, except for her GGT. The GGT is the number that shows how the bile ducts are doing. It is higher than last week, but not as high as it has been. On top of that, she had a couple of white stools. So, I called the docs and told them this and they scheduled her for an ultrasound. We went in yesterday to have this done. I haven't heard anything back on the final report, but the radiologist said that her central bile ducts are more dilated than the past ultrasound, they are measuring 8mm and the previous ultrasound showed 3mm. He was a little baffled that only the central ducts are dilated and not any of the peripheral ducts. One possibility, he said, was that she may have an infection in there. Dr. Book was out of the office on friday, so hopefully on Monday we will know where to go from here. At least her liver functions are better, so no biopsy for now. That's good!

I am not too worried. Her stools are back to normal color as of yesterday, so at least we know bile is flowing and not completely obstructed. She really is doing well, so don't worry. I will update when I hear the final report on the ultrasound hopefully Monday.

Thanks....

Angie

Liver numbers

Kaelyn's liver enzymes are up once again... Her docs lowered her immunosuppression last week, in hopes to not over medicate. But, labs show this week that her liver doesn't like it. Her enzymes are all up in the 300's again, they were rocking steady in the 50's for a while which was amazing. So, if the increase in immunosuppression meds doesn't do the trick, she will probably have to get another biopsy done next week to see if she is going into rejection again. I am going to put some positive vibes here by saying that I think that meds will work. Let's see if I am right. She gets labs done tomorrow night, we will probably hear results Monday or Tuesday.

In non liver news -
Kaelyn has discovered a new series of books that she absolutely adores! Skippyjon Jones. These books are hilarious! You do need to have a general idea on how to say a few Spanish words (nothing Dora can't teach you!) but the books are so funny. She goes around the house all day calling me "picklepants" or "bunny boots". She got a couple of the books for Christmas and one included an audio CD of the book read by the author. I think she listens to that thing at least 10 times a day! I just crack up when I read those books! Try them, they are great!

Jacob just started a book club at the local kids bookstore here in town. I think he is really going to enjoy it. He is currently reading the "Warrior" series. It's about cat warriors. I haven't read them yet, but he is really enjoying them.

I will post next week when we hear about Kaelyn's liver numbers.

Lots of love to you all,

Angie