Crazy!

I can't believe my last post was in August and here we are in the middle of November! With going back to work and school and the kids going back to school, I don't know where that time went.

We are all doing great. Kaelyn is healthy besides normal colds and ear infections. Her liver is still doing amazing and her AFP is still in the normal range. She is loving first grade. Jacob has been doing amazing also. He having a great time in fourth grade and still loves to read. He has been placed in the fifth grade math class, our little smarty pants. I love that he loves school and learning. I hope we can keep that passion alive through out high school and beyond.

My sister, Amanda, just had a baby through an amazing birth mother. Little Emma Rose was born on November 13th. She is 6 weeks early only weighing 3 lbs 7 oz, so we are all watching and waiting anxiously while she is in the NICU. I can't wait to hold the little miracle girl! I am so happy for my sister and her husband. They are the most wonderful people you could ever know. They have been waiting for over two years for this blessing, and here it is. A little different and more difficult than they imagined, but oh so worth it.

Other than this excitment, our life has been pretty 'normal', if I dare say that word. Yeah for normal!

Love you all,

Angie

Busy summer

I can't believe that it is already August! The kids start school in two weeks (and so do I :P). We have had quite a fun, active summer. We have been camping, gone to Lagoon (the local Amusement park), been swimming a few times and so much more! Jacob went to Robotics camp a few weeks ago and loved it. He is my little engineer that is for sure. He really loves building and programming things. He wants to be a rocket scientist and a veterinarian when he grows up! Who knows, maybe someday we will need a rocket scientist veterinarian. His 9th birthday is in two weeks...can you believe that! He is very excited.

Kaelyn has been doing pretty well also. She has played and played and played. It will be an interesting transition into 1st grade. Full-time school can be a downer in the play department! I will let you know how it goes in a few weeks. Liver wise, she is doing amazing. No problems. I haven't been able to say that, in well....never!

I just started a new job two weeks ago. It has been really hard on me to leave the kids and go work. I didn't think it would affect me this much, but I really miss them. I guess I thought they would miss me too, but not the case. I come home and they say hi mom, and then go back to what they were doing. What did I expect? Them to run up to me and kiss and hug me until I turned blue and never let go? Yup...I guess I did. But I will adjust....this is one step closer to me being a nurse and it is well worth my aching heart. This job will pay for all of my nursing school and supplies, and I get priority registration into the nursing program when I get my prereq's done. One more year, and then I will be an official nursing student, two years after that, I will be an RN. Dreams are hard work!

I will update after school starts in a few weeks. Both kids in full time school...what a milestone!

Uggg...

I know it has been over a month since my last entry. Uggg...There is a lot to catch up on. I am going to start from after Kaelyn's birthday, since that was my last post.

The kids are both out of school! Summer break, yeah! Kaelyn made it back to school in time for the last two weeks. She was able to do the chicken dance at the dance festival. That is the one thing she kept saying while in the hospital that she didn't want to miss. She was a very cute chicken dancer. Jacob did La Cucaracha (spelling?). He was a handsome Latino dancer! I think all of the girls wanted to be his partner...who wouldn't with his cuteness (he would die if he read this!). Kaelyn was able to graduate from kindergarten with her class. It was a very cute program...and I definitely teared up multiple times. She is in the class of 2021. Weird! I saw that at her graduation and it blew me away.

Last week both of the kids went to a week long camp. It is a camp for cancer kids and their siblings, called Camp Hobe. I couldn't believe that Kaelyn was old enough to spend 5 days and 4 nights without me! I had a much harder time than she did. She was VERY excited. Jacob couldn't wait either, he had gone last year and was chomping at the bit to go again this summer. They both had the times of their lives, even though it rained every day. I guess the momma has to let go some time. I really missed them both. But Wade and I did have some fun of our own. We decided it was high time for some couple time. We went out to Wendover and had a free night stay at one of the hotels there. We are not big gamblers, but we found plenty of things to do. We went to a movie, and had the theatre all to ourselves. We also went to check out the old WWII airbase that is there and ate at our Fav hamburger joint. It was really nice to have to quality time with the love of my life. By the time Friday came around though, I was ready to have the kids back. The house was WAY to quiet without them. Though I did clean more in the two days I home by myself than I have in a long time!

The only downer from Camp was what happened this week. On monday we received an email from the camp director that a couple of kids at camp had come down with the H1N1 virus (swine flu) shortly after returning home, meaning they were contagious up at camp. And then that evening, Kaelyn came down with a fever, cough and stomach pain. Man we had been trying so hard to avoid this one. I called her docs on tuesday morning and they quickly put her on Tamiflu, the anti-viral that is quite effective against this flu. I was very worried, not only for Kaelyn but for the whole family. Fortunately we caught it withing the first 48 hours and she seems to be getting better. Actually, she is running around the house playing like a monkey this morning. So, no worries. The rest of us are still healthy also. Wade and I did go around the neighborhood on Tuesday and tell eveyone what was going on. Kaelyn and Jacob had played with all of the kids n the neighborhood a lot over the weekend. I hope we didn't scare anyone too much, but we wanted them to be informed. I would feel horrible if one of the kids got sick and the family didn't now that they had be exposed. It is best if you can catch this virus in the first 48 hours. Anyway, we haven't had a single door bell or knock on the door in three days. I think they are all a little scared. Hopefully that is a good thing. We should off quarantine in a few days. Crazy week.

Well, now you are all caught up. We really are doing well. The roller coaster rolls on! Check out the flikr account, I have put up a bunch of photos.

Love to you all,

Angie

Kaelyn is 6!

Today is Kaelyn's 6th birthday! She is so excited. She came into my room this morning at 6:30 am and asked if it was her "real" birthday. When I said yes, she jumped for joy saying now I am really 6 years old! I can't believe that my little baby girl is really 6. It is miraculously amazing! 5 years ago on this date we were told she only had a 30% chance of surviving to her second birthday. Look where we are today! I thank God every day for that girl and her spunk. What a wonderful day for a party!

As far as liver issues go, she is doing great. Her labs are beautifully normal. She went back to school today and had a wonderful time. She doesn't even seem to be a bit tired. That may be due to birthday adrenaline, but I will take it!

Lots of love to you all,

Angie

Home Sweet Home

Kaelyn was able to come home last night. She is on IV Antibiotics with a PICC line in her arm. Home is as good of a medicine as anything, I think. She has been walking around playing her Age of Empires and dressing up our cat, Mickey-Belle. I think she is very happy to be home. She also slept very well. Nothing like home.

She continues to get better and better. She should be able to go back to school within a few weeks. She really misses her teacher and friends there.

I am so happy to have her and I home. Hopefully this surgery will be the fix that works long term.

Lots of love to everyone,

Angie

Much Better

We figured out a good regimen of pain meds for Kaelyn and she is doing much better today. She is up and walking a little bit and also playing and smiling some. Right now she is playing Candy Land with Jacob. He is such a good big brother. I am amazed by him. Kaelyn is finally starting to look like herself again. We are getting some of the excess fluid off of her and she is back to her rosy pink self. It sounds like if we can get her electrolyte balance and IV antibiotic dose more in control than we may get to go home tomorrow! Very exciting!

Thanks for all of your prayers and help throughout these past few weeks. We take one day at a time, but without Him, even that can be too much to handle.

Hunger partially satiated

They did let Kaelyn start on clear liquids yesterday. I had the surgeons paged twice in order to get them to make their decision and put the orders in the computer. They said at 7:15 am that they would make the decision, but it didn't actually happen until around 11. A 5 year old does not understand that the doctors said yes you can eat, but you have to wait until they put "orders" in the computer. It was a rough 4 hours. She still wants more then just broth and jello though. She keeps asking why she can't have noodles in her soup. Hopefully today they can advance her to atleast a full liquid diet. Then she could have malt-o-meal and yogurt.

They also took her off of her epidural last night. Wade spent the night with her and he said it was miserable. They put her on an oral pain med. This made her belly hurt, since all she has in her tummy is liquids (I am very upset they did this, you would think dr's should think about those things...grrr). She also is having some pretty bad gas pains that I guess the epidural was masking. The pain service needs to do something more for her. Wade had them paged around 4 times last night, but it sounds like they really didn't do much. They actually made her get out of bed and try to walk around 3 am! She hasn't been able to sit up let alone stand!!!! I am very upset. When I get in there today, there will be some heads rolling. I am usually a very calm, quiet person. But this day is the day my inner banshee comes out. What were they thinking?!!

On the flip side, today is the Pinewood Derby for Jacob. So he is going to go race his car that he and Wade made. I have to put on a happy face for now. Jacob deserves that. He really is a superhero alongside Kaelyn.

Hungry

Kaelyn is hungry. And the docs do not want her to eat yet. She tells me everytime she opens her eyes that she is starving and that the mean doctors haven't let her eat for four days. She is breaking my heart. The docs have good reasons for what they do, but I don't think they have spent any amount of time with a 5 year old that hasn't eaten in four days. It is stressful and extremely hard. The surgeons say that since this was such a extensive surgery involving the intestines they want her to take it slow with the eating. Hopefully tomorrow they will let her start with clear liquids. I almost wish she was sedated so she didn't have to go through this hardship. Poor little thing. She is also very swollen, her cells are really leaky causing her to be puffy everywhere. This is also very uncomfortable. I tried to get them to give her some lasiks to help dry her up, but they don't think it would help at this point. Maybe in a couple of days. Kaelyn is getting very tired of people telling her that she will be able to eat tomorrow. Tomorrow is a very long time for a five year old.

At least she is starting to be more awake and not in so much pain from her incision. I guess we have to take the pluses as they come. More tomorrow...

Feeling yucky...

We were transferred yesterday from the ICU to our room in the ICS (Immunocompromised Services), that is a good thing. It is so much better here. Quieter, less hustle, and a bed for a parent. Kaelyn is doing okay. She is still in a bit of pain. She had a really rough night last night. With blood and albumin transfusions, fevers, blood draws, pain and all around discomfort. The surgeon said that this is a very painful procedure, especially when you have a liver surrounded with as much scar tissue as Kaelyn had. It was adhered to the abdominal wall, so he had to cut it free. That in itself is very painful. Today we were minutely able to smooth her pain. That is, it was a little less than the night before.

We drew blood cultures last night because of the fever and the already have come back showing some growth. So she does have some sort of blood infection also. This is not so good news. This could mean that there is a leak somewhere in the liver or intestines. If that is the case, then it could mean more surgery. This was part of our apprehension for doing this procedure. We will see what bacteria does grow out of the blood and go from there.

She also is so hungry and the surgeons don't want her to eat. They have good reason, not wanting the liver to have to produce too much bile at the moment and her gut may not be fully revived after the surgery, but it is so hard for Kaelyn. She doesn't understand why the doctors would make her starve. This part is really hard on me and Wade. We are hard wired to provide basic needs for our children, and that includes feeding them when they are hungry. Maybe tomorrow they will let her eat.

I just want to skip this part and get back to having a healthy, well little girl. On top of it all, I have a silly chemistry final on Monday that just doesn't seem important now at all.

Prayer for comfort from the pain for our girl. She could use the extra blessings.

Love,

Angie

In ICU

Kaelyn was in surgery for about 5 hours yesterday. The surgeon explained that she has a whole lot of scar tissue and it took longer to get to where he needed to be. He actually had to extract the whole liver out of her body to get do what was needed. I was not aware that it was going to be that extensive of a surgery. He was able to go in and excavate the liver to the bile duct and put in a stent and suture the opening large enought that it should drain well. She is not feeling very good, obviously, but they did place an epidural to help with the pain. She will probably be in the ICU one more day. Her bilirubin is down, but some of her Liver functions are elevated. This is to be expected with that much handling of the liver.

I have to say that I miss Seattle Children's very much right now. The ICU here is not hospitable to parents, no parent bed in the room. I can't leave her there alone, so I slept in the rocking chair by her bed. There are many other things that I could rant about that are lacking here compared to Seattle, but I won't. Let's just leave it at I miss Seattle Children's.

I will try and update at time allows.

Rollercoaster

Okay - so we are back on for surgery today. I guess the surgeons previous cases all went really well and fast. So Kaelyn will go into the OR around 3:00 pm this afternoon. Too bad they couldn't have done her this morning...this means that she has to fast until then. No food all day makes for a grumpy girl.

I will update later...

No Surgery Today

The surgeon just came in this morning and told me that they want to postpone the surgery. So no surgery today. He said that there is a recent liver transplant patient that is not doing well, like Kaelyn did after both transplants, and needs his attention. I totally understand that. He also said that he wants to be able to dedicate plenty of time to Kaelyn's surgery and not feel rushed or get interrupted. So possibly she will go in on Friday. He said that if she is stable, they may even wait two weeks to give her time to recover from the flu (the anesthesiologists would be much happier with that scenario). I am both relieved and stressed about this! I was all ready for the surgery and the hopeful fix, but ya know, it's always good when your child isn't cut open for the day! I just hope that she is in fact stable enough to wait.

She visibly is doing much better today. Her Bilirubin is down today, not to normal, but much better then previously. She is a little less yellow and much more energetic. She currently is hiding in a nest of pillows and blankets laughing and giggling. It's good to have her back.

We may be able to go home until surgery if the docs feel she is stable enough. I will update later today after I hear what the plan is.

Surgery Details

Okay, so I talked with the surgeon yesterday and he explained the procedure to me and why we need to do it so quickly. The bile duct that we had the drains in a few years ago are not draining. The past few years they were draining only a trickle at a time into the common bile duct, but it was enough. Now the place that it was draining from is totally closed off. He said that they will have to make about a 5 or 6 inch incision in her abdomen, go into her liver and create a new duct (his words - boar a hole in her liver - sounds scary) from this undraining bile duct to the common bile duct. Luckily the bile duct that needs to be drained is very large because of all of the back up, I guess this helps. He said that there could definitely be complications, like leakage or if he even nicks or messes with the main portal vein their could be problems. The main portal vein is basically the only blood supply to her liver since her hepatic artery was blocked at transplant. The other complication may be her lungs. Since she has had the flu her lungs are not so strong. She may have to spend some time in the ICU intubated (with a breathing tube). Also, not fun. But he believes that we need to do this surgery as soon as possible. If we wait,like the anesthesiologist want to, the liver will start to deteriorate even more causing more damage to the liver tissue and making it harder to operate. Also if we wait she will most definitely get an infection and have to have drains placed, which is not a fix only a bandaid. And we all now how hard it is to have drains. When she had them the last time, she was in and out of the hospital every two weeks with drain replacements, infections, IV antibiotics and other craziness. Hopefully everything will go well. And we can have our pink, happy little girl back.

She will go into surgery tomorrow morning, I am not sure what time exactly. I will post updates tomorrow.

Angie

Jaundice

So, Kaelyn had labs drawn on Monday of this week. We got a call on Tuesday saying that her liver numbers were significantly elevated. Dr. Book scheduled her for a liver biopsy on Wednesday. She had not been feeling the greatest the previous few days, fever and nausea. She also had been really itchy. Her kindergarten teacher even commented on it when i picked her up on Monday from school. We went in on Wednesday to do the biopsy. After the procedure she felt really crummy. She vomited and spiked a fever. Then she felt like she couldn't breath and her O2 saturation kept falling below normal. So we put her on oxygen and some anti-nausea meds. An X-ray was done to make sure she wasn't bleeding. She wasn't. So what was going on? We were finally admitted to the hospital about 3 am. The next morning when she woke up she was as yellow as a daffodil. Her bilirubin jumped from 0.2 to 5.9 in two days. She also has the flu. Thus the vomiting, fever, and difficulty breathing but that did not explain the rise in bilirubin. So we went in for an ultrasound. This didn't show too much change from the one we did in January. A little narrowing in the common bile duct, and still some dilitation in the interior bile ducts. Her biopsy did not show any rejection, which is good. Dr. Book met with the liver surgeons to discuss Kaelyn. They think that a surgery to connect the bile ducts to the intestines would be the best option for her. I wasn't in the room when the dr's explained it to Wade, so I can't describe the procedure better until I talk to the surgeons. Hopefully I will be able to talk to them today.

I can't believe we are back to this. This happened really fast. She isn't feeling very good. So I need to get back to her. I will try and update as I can.

~Angie

Sorry Everyone!

You know, no news is good news right? I apologize for not updating, well, almost 3 months.

Kaelyn is doing spectacular! So far her liver numbers look great. The ultrasound we had done in January showed inflammation in her bile ducts, but not really any worse then previously. She is feeling good and being an almost 6 year old! Her birthday is next month and she asks me about it almost everyday.

We took a much needed trip to Washington last week. We visited all of our favorite Washington family members. Sorry to those of you we didn't get to see. I wish I could have visited Seattle Children's. We really miss you guys. Kaelyn still asks about Nurse Anne and Nurse Krispy (Christy).

Love you all...don't worry if I don't update, it means that all is well in Kaelyn land and we are busy having a 'normal' life.

Labs and Ultrasound

Kaelyn's Liver functions are actually doing better, except for her GGT. The GGT is the number that shows how the bile ducts are doing. It is higher than last week, but not as high as it has been. On top of that, she had a couple of white stools. So, I called the docs and told them this and they scheduled her for an ultrasound. We went in yesterday to have this done. I haven't heard anything back on the final report, but the radiologist said that her central bile ducts are more dilated than the past ultrasound, they are measuring 8mm and the previous ultrasound showed 3mm. He was a little baffled that only the central ducts are dilated and not any of the peripheral ducts. One possibility, he said, was that she may have an infection in there. Dr. Book was out of the office on friday, so hopefully on Monday we will know where to go from here. At least her liver functions are better, so no biopsy for now. That's good!

I am not too worried. Her stools are back to normal color as of yesterday, so at least we know bile is flowing and not completely obstructed. She really is doing well, so don't worry. I will update when I hear the final report on the ultrasound hopefully Monday.

Thanks....

Angie

Liver numbers

Kaelyn's liver enzymes are up once again... Her docs lowered her immunosuppression last week, in hopes to not over medicate. But, labs show this week that her liver doesn't like it. Her enzymes are all up in the 300's again, they were rocking steady in the 50's for a while which was amazing. So, if the increase in immunosuppression meds doesn't do the trick, she will probably have to get another biopsy done next week to see if she is going into rejection again. I am going to put some positive vibes here by saying that I think that meds will work. Let's see if I am right. She gets labs done tomorrow night, we will probably hear results Monday or Tuesday.

In non liver news -
Kaelyn has discovered a new series of books that she absolutely adores! Skippyjon Jones. These books are hilarious! You do need to have a general idea on how to say a few Spanish words (nothing Dora can't teach you!) but the books are so funny. She goes around the house all day calling me "picklepants" or "bunny boots". She got a couple of the books for Christmas and one included an audio CD of the book read by the author. I think she listens to that thing at least 10 times a day! I just crack up when I read those books! Try them, they are great!

Jacob just started a book club at the local kids bookstore here in town. I think he is really going to enjoy it. He is currently reading the "Warrior" series. It's about cat warriors. I haven't read them yet, but he is really enjoying them.

I will post next week when we hear about Kaelyn's liver numbers.

Lots of love to you all,

Angie

Food Storage Made Easy

A friend of mine sent me this link to a new website starting up this year all about how to get your food storage in order. I thought it was worth mentioning and passing it along. Check it out if you would like. Looks like they have some good info on starting your food storage and using what you have.

Click on this icon and it will take you there...have fun!