Update on Drains

Well, unfortunately the internal drain was not able to be placed. Kaelyn's bile duct walls are too thin in result of the inflamation and a possible infection. The external drain is still in place and they will retry the surgery in a few weeks after her ducts have a chance to strengthen up. If they are still not successful with the interventional radiology method (inserting the tube with the guidance of ultrasound) they will possible do a more invasive surgery to try and place the drain. Hopefully the next time around all will go well.

We have been in and out of the hospital a lot in the past few weeks for various reasons, but Kaelyn is doing very well. She seems to feel pretty good. And she looks awfully cute carrying around her bile bag in a pretty pink Hello Kitty backpack! What an amazing girl she is!

She also is featured in an ad campaign for Seattle Children's Hospital. Her mug is on the home page of www.seattlechildrens.org. If you click on the link next to the picture it will bring you to a larger version of the photo. The man with her is the head of the transplant program at Children's and is very involved with her care. It was pretty fun have her in her first "model" shoot! She is deffinitely a natural, as long as her pacifier is alon for the ride!

Love to all,

Angie

Promising News...

Hello everyone,

This past week Kaelyn has undergone two surgeries to place drains into her bile duct system. Right now they are internal/external drains, meaning that Kaelyn has a tube coming out from her tummy area draining into a bag. On Wednesday, Feb 16 she will go back in for another surgery to try and place an internal drain from her bile ducts directly into her intestine. The surgeons have given us promising news about this. They are hopeful that we may be able to save her liver and not have to go through another transplant! That is the most wonderful news! They think that the liver function has been hindered by the dialation of the bile ducts, and ever since the drains have been placed her numbers have been getting better and better. So, if we can get this internal drain to work properly to reduce the inflamation and blockages in her bile ducts she will not have to have another transplant! What a miracle sent from our Father in Heaven. He is watching over our daughter and sending blessings in all forms.

We will update after the surgery on Wednesday. Love to all!

Angie

Biopsy Results

Good News! No sign of infection or rejection taking place in Kaelyn's liver. They think her elevated labs are in result of continued deterioration of the bile ducts. Which in itself is not good either, but is a whole lot better than rejection or infection. Kaelyn and I are back a home now, thank heavens we only had to stay one night in the hospital.

Love to you all.

Angie

Liver Biopsy

This week has been a huge whirlwind of emotions and events. On Monday we went into our normal clinic visit and all seemed well. That evening we received a call from the surgeons. They said that Kaelyn's potassium level was very high and they wanted her in for labs the next morning. They also warned us that a high level could cause seizure or black outs and at worst cardiac arrest. Needless to say we did not sleep well that night. Her potassium level was fine, it was just a lab error, but her liver function results had skyrocketed to almost double what they were last week. So, we recieved a call on Wednesday afternoon telling us that Kaelyn needed to come into the hospital with in the week for a liver biopsy to test for infection or a possible rejection episode. That brings us to today - Thursday. We came into Childrens early this morning for an ultrasound - we have not heard official results of that yet, but it looked about the same as previous ultrasounds, some slight blood flow noted into the liver from the hepatic artery but not much. Then it was off to surgery for a biopsy. This in itself is not too invasive, they just a use a hollow needle to exact some tissue from the liver, but Kaelyn was fasting, had no nap and was very cranky afterward. She didn't handle the anestesia well, vomited and also had a bad bleeding episode after taking out her IV. She is finally asleep now, and peaceful. We will be staying the night here at Childrens and will hear the results of the biopsy tomorrow afternoon.
I will place an update tomorrow after we hear the results.

Please keep Kaelyn in your thoughts and prayers. She is so precious and now that she is older and has tasted freedom the past two months she does not want to be here at all. I don't blame her, either do I.

Love to everyone,

Angie

January 3, 2005

I need to apologize for not upkeeping the blog over the month of December. With our move and all of the holiday hustle and bustle we just didn't get our computer up and running until this past weekend.

Over all though it has been a wonderfully uneventful (hospital) month for us. Kaelyn has not had to be admitted to the hospital for almost two months. She is doing so great! Kaelyn herself has not been uneventful though. She has learned to walk!!!!! What a wonderful Christmas present for all of us! She is just toddling around now, getting into anything and everything. It is so cute watching her short little legs shuffle around. What entertainment! She also has been working on a head of hair. It seems to grow some every night! Her eyebrows are dark and very full and her head hair is, I think, going to be a light brown color. She looks so great! She also has surprised all of her physicians. On her last clinic visit Dr. Healey confided in me that he thought she would be having serious problems by now with the bile ducts. He figured she would be having infection and jaundice and be heading for her second transplant by now. But, as far as we can tell at this point she is well. Her labs are stabilizing some, still high but not climbing any higher and her health has been amazingly well. So, for now the plan is to still have her listed but not accept any organ offers until something changes in her health or her labs start to sky rocket upward. That was wonderful news to us! It sure has been a good month. I believe that we have been blessed with the miracle of a little more time. What a blessing!!

Jacob sure has had a great time having us all together too. We all had a marvelous Christmas. I think we all needed the time to be together without the looming threat of hospitalization. It was just wonderful. We also are just loving our new home! It is so great that Adele (Wade's sister) lives just two doors down. The kids are having a great time with their cousins and I love having the company during the day. It is also very comforting knowing that Adele is their to help us when the times get tough. She is wonderful!

I hope all of you had a great Christmas season. We sure love you and I am going to try to keep the site updated more often now that we have our computer up again.

Love to all,

Angie

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