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

Bye, bye purple line....

Bittersweet as it is, Kaelyn's purple Power PIC is out. She had a fever on Friday night, late (of course) and so we headed into Primary around 2 am on Saturday morning. When we were in the ER trying to get labs, her central line (ie, purple line as Kaelyn called it) was leaking. Since she got this line in Seattle, 16 months ago, Primary does not have a repair kit for it. So, unfortunately or fortunately (I can't decide which one it is yet) we had to have it surgically removed today. The surgery went well, and pretty purple line is gone. What does this mean for Kaelyn? Well, she will have to get "poked" for all of her lab draws now and she will have to have an IV placed whenever she needs fluids or IV antibiotics. Ouch! But, it is one less conduit for bacteria to enter her body, which is a good thing. And one less foreign thing in her body to create infection. So, bittersweet. She will probably be inpatient for a few more days. She will probably have a cholangiogram and tube exchange while we are here. Her biliary drainage is smelly - usually a sign of infection.

But, regardless, she is doing very well. Playing with her horsies and watching Dora. Two of her most favorite activities...

Love all,

Angie

Clinic

On Monday Kaelyn had labs drawn and a transplant clinic appointment. Her liver labs are all elevated, hopefully it is just because she has a cold. We will go back in next monday for follow up labs. If they are better than all is well, if not - well- we will schedule a cholangiogram and possible liver biopsy to rule out rejection. My opinion is that the labs are elevated because of the cold and it is not rejection. So we will see on Monday how is goes.


She is doing better as of today with her cold so hopefully things will be fine on Monday.

Jacob started school this week - 2nd grade. He says that he loves it and his teacher is really nice. Whew!


Angie