No news is good news!

I just wanted to post and let you all know that Kaelyn has been doing really well. It has been so fun watching her play while she feels good. We have had a really good two weeks. She does still have the JP drain, and it is still outputting some, but she sure doesn't let that slow her down! She calls it "Bob". I kept saying that we needed to go empty the bulb (the JP drain has a little bulb on the end to collect the fluid) and one day Kaelyn asked me, "mommy why is his name Bob?"! Ever since then the JP drain has been our friend Bob. It's very cute!

So I finally got the kids in for pictures the other day! Now I can replace the one I have on my wall with Kaelyn beautifully bald with an NG tube in her nose. The kids did great and we got some really cute pictures. I won't be getting them until December but it was all worth it. We had to brave the flood waters all around us to get to the photo place. It's been crazy wet around here. We went to the river a couple of days ago and it was so high and turbulent. They had all of the roads closed any where near the river. On wednesday Wade couldn't even get out of town to get to work! Our house is fine, but there are others that we know that have had some flooding. It's been very wet...

Anyway, all is well. Kaelyn goes in on Tuesday for her transplant clinic appointment and I am sure we will be talking about "Bob".

Angie

Surgery went well...

Kaelyn came out of surgery yesterday around 12:30 pm. The IR Docs were able to get the stent through the stenosis and into her intestines. They did the angio (balloon) dilitation and opened up the blockage. The rest of her bile ducts still look great. That is music to my ears! They say that this tube should not clog up as easily as with her last liver because of the way the bile ducts look. There should be little to no sluffing and so less icky stuff to clog up the tube. The plan is to change the tube once a month (which was the plan with the last liver, but we could never make it that long). Hopefully all will go as planned. She was discharged from the hospital this afternoon and we are now home. She is having some pain from the procedure but is doing better today than she was last night.

Good news!

Angie

Cholangiogram and tube placement

So, Kaelyn is currently in IR for her cholangiogram and tube placement. They are planning on doing the balloon thing through the blockage today. So hopefully that goes well. She has been in surgery for about an hour and a half right now. Usually it only takes an hour. It always makes me a little nervous when things start going longer than normal.

Halloween was so much fun last night! Jacob was a veterinarian and Kaelyn was a mermaid princess. They looked so good! I did get some pictures, but cannot find my USB connector for the cammera...hopefully I will find it soon so I can start posting pictures again. Kaelyn has changed so much since her transplant. She has so much hair! I actually gave her bangs a little trim a couple of weeks ago, her first haircut! She was so happy! She said, "mommy, that didn't even hurt!" I think she was a little nervous of the scissors coming so close to her fore head. She is such a cute doll. And Jacob is just growing up so fast. His teacher says that he is such a great kid in class and that he is an example to all of his classmates! He is learning to read and write! I love 1st grade! It's so fun to see him sit down and try and read a book. I loves to write on white boards and put little messages on them. The last one he did was I love mom. Melt my heart!!!

I will try and post later today to let you all know how it went.

Angie

Jacob's turn...

This week has been all about Jacob. On Sunday morning around 3 am he spiked a really high fever of 104. So, I called our doc on call and he wanted us to bring him into the ER. I retook his temp while I had the doc on the line and it was down so the doc said that I could wait and bring him into a walk-in clinic on Sunday. We did that and it was not a good experience. Needless to say, I will not go to that clinic again. They did a quick strep test that was negetive and sent us on our way tellin me that it was just a virus (my mommy senses were telling me different). Jacob just continued to get worse so I called our doc again on Monday and got him in for an appointment. They too did a strep culture and the quick version was negetive, but the doc felt that he most likely had something not virus related and put him on an antibiotic. Tuesday was not any better so I called again, the doc was afraid that he might have mono, so I took him into clinic for a mono test and a CBC. Later that night we got a call from the clinic saying that the 24 hour strep culture was positive. Wednesday he was still spiking 103 degree temp so I called again and went back to the clinic. Luckily his mono test was negetive. The doc put him on a stronger antibiotic. He has had his two doses today and seemed to be doing much better tonight. So, hopefully he is on the downhill side of this and will get better. I have never seen him so sick. It really worried me...after all we have gone through with Kaelyn our minds tend to think of the worst possible scenario. Luckily this is just a common illness that is very treatable - thank heavens once again.

So, Kaelyn has been very blessed with health this week and with sleeping through the night! I really believe that has been a gift from above so I could concentrate on Jacob and get him through his restless, fever filled nights. Little miracles! (I hope it will continue so maybe I can get a whole nights rest soon!)

Lots of love,

Angie

Cholangiogram and tube placement

Kaelyn went in for her cholangiogram and tube placement on Friday. She did very well. The bile ducts look great! Isn't that good news! She does have a blockage or stricture in the anastamosis (place where the common bile duct is sewed onto the intestines), but this is the scenario that we hoped for. A drain was placed, but was not able to go through the stricture just yet. Her liver had too much swelling to risk trying to go to roughly and push their way through the stricture. So for now the drain is sitting inside her liver draining externally to decompress things in there. It seems to be working. The drain is putting out a lot and Kaelyn's pain is so much less than it was. On November 2 she will go back into the hospital for another cholangiogram and place the drain through the stricture with a balloon dilitation to open it up. Hopefully she will only need the drain for a little bit and when the stricture has opened up and stabilized we can take it out. I was just so happy when the docs came in and said her bile ducts look wonderful. I think that was just the best news we could have ever heard. I was so worried that we were heading into a repeat of the last two years. Thank goodness it's not.

We are now home as of yesterday, and Kaelyn is loving it! Unfortunately Jacob is sick, but he should get better soon.

Love to all!

Angie