AFP Results...

Kaelyn had an AFP drawn this morning. It came back as 1.1, normal! Yeah! There is always such anticipation when we draw this, so I am so relieved.

She will have her cholangiogram and tube change on monday. So far, no growth on her cultures.

Everyone here at Primary Children's have been so great. It is an adjustment, we do miss our nurses and docs in Seattle, but I think Kaelyn will be well taken care of here.

Love,

Angie

Primary Children's Hospital

Well, long story short - we are already in Utah. We had to move a few weeks early for insurance reasons. Crazy - I am glad that the packing part is done. But, not even 12 hours after pulling into my parents house yesterday, we areexploring Primary Children's in Salt Lake as an inpatient. I flushed Kaelyn's drain this morning and there was some resistance and than whoosh, so I think I dislodged something. I called the liver folks here and tried to get a cholangiogram scheduled. But no more than an hour later Kaelyn started chilling and then spiked a fever. So off we went into Primary's. I am fairly certain she will have positive blood cultures. We changed her dressing on both her drain and her central line. Both of them looked a little red and the drain actually smells a little funny. So, more antibiotics here we come! The crazy thing is that she just finished her last two week course of antibiotics on Wednesday. Something is going on. We just have to figure out what that something is. They did an ultrasound today and it looked good. Probably tomorrow they will do a cholangiogram to see if there are any strictures in her biliary system.

All of this after an 18 1/2 hour drive with two kids and a cat. I think I am a little tired.

Love,

Ang

Birthday pictures

We are home.

We got to go home Friday afternoon! I was very surprised and happy. I love Dr. Horslen...the docs came around for rounds and were all set to have us stay until we had two more days of negative cultures and Dr. Horslen pipes in with something like this, This mom knows what to watch for and how to administer antibiotics. If there is a change in her cultures we will just give her a call. Let's let them go home. I was so excited and happy! And, Kaelyn has been doing just fine at home on antibiotics. So hurray! I hope I can get his kind of trust from our new docs in Utah.

We are packing and packing and packing....I can't wait to be settled in our new house in Utah. 17 more days....

Love to all,

Angie

ER visit...but good news...

Back in the hospital once again. Kaelyn presented a fever late Wednesday night, so off the the ER we went. She does have positive blood cultures so we will be here until atleast Sunday. She went in for a cholangiogram and tube change yesterday. The docs came back with wonderful news. Her biliary system looks amazing! They could find no evidence of sludge or narrowing. They mentioned that if we were not moving out of state they would have considered pulling the tube to see what would happen. But because of our move they wanted to be cautious and leave it in until after we are settle. I was actually very grateful they decided that, because the last thing we need during our move is a major liver event and have no access to see what is going on. Dr. Shaw, our IR doc that does most of her tube changes, mentioned that he called the IR doc in Utah and is very confident in her ability to care for Kaelyn. He filled her in on all of Kaelyn's info and they think that within a month after we are there that they may be able to get rid of the drain! I am very excited! Kaelyn has told me that the first thing she wants to do when she is tubeless and healed is go swimming. She will be a very cute little mermaid! So keep those prayers coming (it would hurt to cross your fingers too!). I think this will be a wonderful summer!

Angie