Upliftment

Once again my friend whose son, Tanner, had a liver transplant has supplied me with the upliftment that my heart and soul needed. This was on her sons webpage:

"You gain strength, courage and confidence by every experience in which you really stop to look fear in the face… You must do the thing you think you cannot do.” --Eleanor Roosevelt

This is all for some purpose, we just cannot see the ending. I sometimes lose focus on what is really important and that is that Kaelyn's soul has gained it's eternal glory in receiving her body. I know that this life is just a glimpse in our eternity and all will be well in the end.

Love,

Angie

Kaelyn in the hospital...

Kaelyn woke up at midnight on Saturday with really bad tummy pain. I tried to get her through the night with tylonal, benadryl and zofran (anti-naseau) meds. It sort of worked, she maybe slept three hours. So in the morning I called the hospital and brought her into the er. She had an ultrasound, and it looks unchanged from the last one she had before we left the hospital after transplant. Still some sludge in her common bile duct and some nacrosis in the left portion of the liver. Her bile ducts are still enlarged, but not any bigger than before. So, after about 7 hours in the ER they finally moved her to a room. She had an ultrasound today to complete the picture of her liver. They want to make sure there are no large fluid collections that may be causing discomfort. The plan is to do a cholangiogram on thursday or friday and see if there is any strictures (blockages) in the bile ducts. This may be causing the leak that is in her liver to not have a chance to heal and it in fact may be getting bigger. Though there is no increase in drainage. If there is evidence of strictures they will put in a bile drain. I know that if it is needed then we need to do it, but part of me screams noooooo. I have a feeling that once we get that drain placed that it will be a very long time, if ever, that it will be removed. Dr. Reyes says that it could be simple and short if the stricture is in an anastamosis (place where her duct is connected to the donors). The drain will just decrease the pressure to the leak and allow it to heal. And then they could go in and place a balloon in the stricture and open it up and hopefully take out the drain. I will place my prayers and hope in that scenario. I should know more about her CT scan tomorrow after rounds and I will try to update so you all know what is going on.

She is not having too much pain today and has had a good time playing inthe playroom and running around dazzling all of the nurses. So things are not too bad. So, just pray for her that she will be comfortable and we can figure out what is going on.

Love to all!

Angie

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