Clinic appointment

So today Kaelyn had her first outpatient clinic appointment post transplant. All of her numbers look really good. They are lower than they have ever been. This is good. Dr. Healey said that if her numbers keep looking this good for the next month that she is probably out of the woods for bile duct damage. Hopefully they will look good from here on out. There is a chance that the leak in her biliary system could be a sign of narrowing and blockages in the bile ducts. The hope is that the drainage will discontinue and that would mean that the little leak is all healed and the bile is flowing where it is supposed to. If it keeps draining we may need to put a bile drain in. That always seems to be hanging over our heads...but it may not happen. The JP drain she has right now is not really putting out much, so hopefully it will soon just be down to nothing and we can remove it and not worry about anymore bile issues. Time will tell.

Other than the doctor visit Kaelyn has been so happy to be home! It is really just good for body and spirit to be in your own home (for both Kaelyn and I). It is really fun to see her running around again, even if she is still a little wobbly from not using her muscles for 5 weeks. She looks like a new little walker.

Time to gives meds and get everyone to bed, me included.

Angie

Kaelyn is home!

I know I have left some holes in the story, but first things first: We are home! Kaelyn was discharged yesterday evening and we got home around 6:30 pm. It feels soooo good. Kaelyn and Jacob have really been enjoying being "a family" again. That's what they both keep telling me. Very cute.

So, on Monday, Kaelyn ended up only having an ultrasound. Her liver numbers were much better on monday and have continued to get better. The ultrasound showed that the common bile duct was filled with some sludge. Thus the reason the numbers went up. So they decided to just put her on Ursodile (bile thinner) and not do the whole liver biopsy/cholangiogram thing (thank heavens, literally). So, here we are, home.
HURRAY!

She did have to issues with withdrawal from her narcotics. So I did bring her home on a slower wean, but we can handle that. Atleast I have my little drug addict home! We just need to interest her in eating now. She also came home with one of her JP drains. She had a scan done yesterday where they pushed some contrast into the drain and watched where it went. It does communicated with the biliary system, so Dr. Healey just wants to leave it in for a couple more weeks. He feels that it is such a slow leak that it will heal up on its own. But we have dealt with tubes and drains for so long that it only feels 'normal' to come home with one! Eventually though, she should have no tubes comeing out of her belly, won't that be amazing!

We are just going to enjoy our little family this weekend and have fun with each other!

Love ya,

Angie

news...

Well, we all hope and pray for good news, but sometimes it just doesn't work out the way we all hope. Kaelyn's liver numbers are on the rise, doubling everyday. We had an ultrasound this morning. The good news is, we still can see some flow in both right and left hepatic arteries. The not so good news is that her bile ducts are very dialated and that could mean a blockage somewhere or her liver is finally showing us the damage that may be going on. Tomorrow Kaelyn is going in for a needle biopsy to make sure she is not having an episode of rejection. This is not as scary as it sounds. Rejection can be reversed very easily with about a weeks worth of IV Steroids. The other thing she is having done tomorrow is a cholangiogram. Sound familiar? She had many of these with her previous liver to check her bile ducts for flow or the lack of. She most likely will come out of surgery tomorrow with the dreaded, but ever familiar, bile drain. Hopefully they will see beautiful bile flow with no blockage, but I am not crossing my fingers.

I do apologize for the lack of updates lately. It has been really hard to get out of Kaelyn's room to a computer. Also I have been very tired, so when she is sleeping usually so am I. I will try and update tomorrow though so you all can hear the news.

Angie

Scan for bile leakage

Today Kaelyn had what is called a Hide-a-scan (I am pretty sure that is not how it is spelled, but that is how it sounds). This scan uses radioactive liquid that is injected into the broviac line and is traced through the body with a camera. It took almost two hours to complete. Kaelyn did a pretty good job with it and even fell asleep about the last 10 minutes. The results were good, no leakage that could be seen. Tomorrow they are going to run a shorter version of the test to make sure there is no remaining radioactive particles in her system. If they find some it could mean that there is a small leak. But today's scan points to no leak. Yeah! So, they reason for the green drainage could be that it is an old hematoma that is only now being drained. I guess blood can turn a bile "ish" green color when it gets old.

We talked a little bit about when we get to take Kaelyn home today. It will probably be two more weeks. Her weaning off of the narcotics will most likely take that long to complete. She has just been on them too long to go any quicker.

Jacob is doing okay with all of this. He came to visit us in the hospital yesterday and I think we had a pretty good time. Right when he was leaving though, he asked me when he was going to see me again. That just about broke my heart. No 6 year old should have to worry about the next time he can see his mom, especially in a happily married, functioning family. That is one part of this whole experience that still makes my heart hurt. How is this going to affect Jacob. Though he has been quite brave and non-angry about the whole thing. He is such a special kid.

Once again, I put my trust in the Lord and pray that all will be well.

Angie

Making progress...

Kaelyn seems to slowly be getting better. This morning she woke up and was playing and scooting all over her bed. An hour later though she was worn out and is now taking a mid-morning nap. It was fun to see her want to play so much! Her tummy is still kindof of full looking, like there may be some fluid collecting in her abdomen. The drainage out of her drain looks green. They tested it for bilirubin yesteday and it does have a fair amount in it. So there may be some sort of leakage of bile somewhere. Tomorrow Dr. Healey will probably make a suggestion on what, if anything, we need to do about it. Atleast she is not fevering and in too much pain. We actually are starting to wean her again off of her narcotics. That is another good sign that things are moving in the right direction.

Love,

Angie