No real news...

I just wanted to post just so everyone knows that we are still around! Sorry it has been so long. Kaelyn did have a tube change last week. It had gotten pulled a little bit out of place. The IR doc did not stitch it in the last time! I was a little perturbed to say the least. This time he did stitch it. She has not been feeling the greatest since then. We were supposed to go to Yellowstone today for a family reunion. But I had a bad feeling about taking her today, so we sent Jacob with his Grandma so he could enjoy some vacation and I took Kaelyn into Primary Children's for lab work. I have not heard the results yet, so probably in the morning. I am just afraid that we will get up to Yellowstone and Kaelyn will get a fever, what do we do then? Well....she is feeling better tonight than she did this morning, so we will see. Maybe tomorrow or the next day we will go up and join Jacob. I hope so. It really is hard to miss those family memories...

No real answers...

So we had transplant clinic today. Dr. Book, her liver specialist, tried to explain to Wade and I what the IR doc saw in her last cholangiogram. It looks like the drain is not connecting to the rest of the biliary system, except for a couple of small ducts. She did say that the biliary tree looked good, but these small little links would not handle draining the entire biliary system without the catheter that is in place. So no pulling the tube anytime soon. Dr. Book said that she was going to send the Seattle docs (Horslen and Healey) the last cholangiogram and speak with them over the phone for some suggestions on what to do, since they know her system really well. Dr. Book said that most likely it will involve a biliary reconstruction surgery to open up the biliary system into one instead of two separate systems only connected by those little ducts. It's moments like these that I feel like second guessing our decision to move....but, I still feel that we need to be in Utah, so I guess we will just trudge on. I just really miss all of the familiar faces. And the trust that we had built up with all of the docs on Seattle. I want to trust the docs here, but I am so glad that they are willing to run by what they think and get the opinions of the Seattle team. I am just a little shocked, since when we left Seattle we were under the opinion that Kaelyn's biliary system looked great, and now one month later we are facing a surgery. I am looking forward to hearing what Docs Horslen and Healey have to say....

Well, I will write again when I have more info...

Love,
Angie

Tube change...

Kaelyn went in today for her first tube change here in Utah. They were two hours late getting her in, but that really isn't anything astonishing. It just means more hungry Kaelyn time to fill. The IR Doc here was a little baffled though, which in turn kindof baffled me. He said he was amazed that Kaelyn's liver was draining as well as it is. He said he was confused on how it all was working. I don't like to hear that a doctor is confused when he is taking care of my little angel. He said he was going to re-look at her previous scans sent from Seattle Children's and talk with a myriad of folks, including the liver surgeon and liver specialist here and also with the IR folks at Seattle Children's, not to mention his colleagues and anyone else he could think of. What does that mean as far as Kaelyn's future liver health, I don't know. She has a transplant clinic appointment on Monday, so I am writing a list of questions and concerns to bring up then. I am praying that this IR doc just hasn't seen a case like Kaelyn's. Hopefully after all of the discussing and studying of past scans will clarify that the liver is fine, like we have been told all along.

Well, we will see....

Home Sweet Home....

We are finally in a home of our own and I love it! The kids have made friends already and things are starting to get unpacked. The neighborhood is amazing. Everyone is so friendly. Kaelyn has been well for almost two weeks. It has been such a blessing to have this time to try and settle in. I hope it continues!

Love,

Angie

Discharged...

Yeah! Kaelyn was discharged yesterday. She had no growth on her cultures and her cholangiogram went very well. They did it without sedation to see if the tube was blocked or if there were any new strictures or pooling of bile. Kaelyn is such a super girl! She did just great. The IR Docs did not see anything new. There was a slight stricture in the same spot as usual, but bile was flowing just fine through it. She also had her 6 month routine CT scans done, again without sedation! I think all of the techs and radiologists think she is amazing (and she is, of course). She was so still, it went very well. I have not heard results from that. On Monday we have her official transplant clinic appointment. I think we are going to discuss her ct's then.

Well, all is going great so far. We are going to move into our new home on Monday. I finally got to see it for myself last night, Wade did good. It is so cute! I really love it!

Love,

Angie