Rollercoaster

Okay - so we are back on for surgery today. I guess the surgeons previous cases all went really well and fast. So Kaelyn will go into the OR around 3:00 pm this afternoon. Too bad they couldn't have done her this morning...this means that she has to fast until then. No food all day makes for a grumpy girl.

I will update later...

No Surgery Today

The surgeon just came in this morning and told me that they want to postpone the surgery. So no surgery today. He said that there is a recent liver transplant patient that is not doing well, like Kaelyn did after both transplants, and needs his attention. I totally understand that. He also said that he wants to be able to dedicate plenty of time to Kaelyn's surgery and not feel rushed or get interrupted. So possibly she will go in on Friday. He said that if she is stable, they may even wait two weeks to give her time to recover from the flu (the anesthesiologists would be much happier with that scenario). I am both relieved and stressed about this! I was all ready for the surgery and the hopeful fix, but ya know, it's always good when your child isn't cut open for the day! I just hope that she is in fact stable enough to wait.

She visibly is doing much better today. Her Bilirubin is down today, not to normal, but much better then previously. She is a little less yellow and much more energetic. She currently is hiding in a nest of pillows and blankets laughing and giggling. It's good to have her back.

We may be able to go home until surgery if the docs feel she is stable enough. I will update later today after I hear what the plan is.

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.