Kaelyn is Tubeless!

So, the removal of the tube was very simple and quick. She did not even need anesthesia. I though that the docs would want to watch her for a few hours but they just sent us home after we were all done. I didn't feel comfortable leaving Salt Lake so we stayed in the city for a few hours after. She did just fine. No fevers and feeling well. So far so good!

Now we just wait and watch.

Angie

Tube is coming out!

Kaelyn will be going in on Friday, yes this friday, at 9 am to get her biliary drain taken out. I am in a little bit of shock that it is so soon (as if a year wasn't enough time to get used to the idea!!). But this is what we have been waiting for right. We are going to do it as an outpatient surgery and just watch her for any signs of infection at home. Hopefully nothing will present itself and Kaelyn can have a tube free weekend!!!!! She hasn't been without some sort tube sticking out of her body since this all began in May of 2004. I am really nervous and excited. Our ward here in Tooele is going to have a special fast for Kaelyn on Friday and will be attending the 7 pm session at the Salt Lake Temple for her. If anyone would like to join in with the fast or attend the Temple in your area please do. She needs prayers and angels. I will update as I can on friday to let you know how it goes...the tube removal should be uneventful, it will just be the watching for infection part that I am a little unsettle with.

Love to all,

Angie

PS - I just put a few new photos on the flickr account - they include Jacob's birthday and both of the kids first days of school. Kaelyn also has been putting herself to sleep all by herself (First time ever!!!) so we rewarded her with a Dora bed - one of the pictures has her in this bed just loving it!

Tube news....

We finally heard back from the docs in Seattle regarding their opinion on what to do with the biliary drain. Their recommendation is to pull it out and see what happens. Wade and I both feel that trying this before doing a major surgery is a good idea. If all is well in her biliary system after pulling out the tube we will have spared Kaelyn yet another surgery. Tomorrow Kaelyn has a transplant clinic appointment, so I am going to bring all this up with her docs here. I know that they would much rather do the surgery and I want to find out why.

So, I will try and post tomorrow with more info and what the final decision is. I am hoping and praying that Kaelyn will be tubeless sometime soon and with a healthy liver to boot!

Love you all!

Angie

Stay one more night

So we did end up staying one more night after the tube replacement for a few more doses of IV antibiotic. But we are home now! Hurray! Kaelyn is doing great.


Angie

Tube change today

Kaelyn will be going in for a tube change and cholangiogram today. I am very happy that the docs actually listened to me and scheduled her. For some reason they are hesitant to change the drains unless she is in distress...I don't think that makes any sense. I want to avoid that, not wait for it. Needless to say, Wade and I are very frustrated with some of the doctors here (not all, we have met a few very nice docs). But the doc we see most is very hard to work with and she always seems to be out of town. We have been waiting for two months to hear what the long term plan is for Kaelyn and her biliary drain. And this doctor just, in our opinion, doesn't seem to see any urgency in figuring out a plan. Grrr!!! Of course, she is out of town this week, so no answers.

I'll stop complaining, now for the good news....after Kaelyn's tube change we get to go home! Yeah!

Angie