Kaelyn home...

So Kaelyn was able to come home on Sunday only from mine and Wade's constant assurance to the doctors that we could do the exact care at home as they were doing at the hospital. They wanted us to stay until the susceptibilities on the bacteria came back. They already had three back and were waiting on one. She was on two antibiotics that cover just about anything. So we saw no reason to make her stay since I can do the IV antibiotics at home. They almost didn't let us go, Wade finally packed everything up on Kaelyn's stroller and started walking around the unit! It worked, because he got to bring Kaelyn home not too long after. I was so happy! We would have had to wait until Tuesday to bring her home otherwise. All of her liver numbers are great. We don't have to go back into the hospital until the beginning of January! Christmas break!!!!

Everyone have a wonderful holiday and remember the birth of our Savior in your own way...

Love,

Angie

Scans went well...

So Kaelyn's cholangiogram went well. It did show that the drainage tube was partially blocked internally and externally was completely scarred around the tube. So nut much bile was being placed into the intestinal area and more pressure was building within the liver. This is probably why the old leak broke open again to releive the pressure. That is why we had drainage coming into Bob like a damm broke. So, with the new biliary drain which is a size bigger and the ballooning the did in there, hopefully we can decompress this liver so no further damage can be done to the remaining bile ducts. They did say that the bile ducts did look a little more inflammed this time compared to last. Which is a worry to me, but if we can decompress this liver than maybe it will repair itself and not be anywhere as bad as her first transplanted liver.

She is still in the hospital too. She was supposed to come home today, but the docs noticed that a new bug was growing in her older cultures and needed to wait for the drug sensitivities to come back. We need her on the right drugs to get the bugs. Even though I think we could be home while all of this occured and they could me a phone call to tell me the sensitivies and then i go pick up the righ meds and vwala! It is done. But this is a weekend in the hospital we are talking about. Things don't get done until monday...But hopefully we can make it happen on Sunday.

We need the whole family home to feel whole. It's kindof crazy that way. Jacob is sick again and it seems like he always gets sick when I have to go to the hospital with Kaelyn for any length of stay. I don't know what to do about that. But I did come home tonight and made him chicken soup, played some Wii with him, read a book, hooked the humidifier in his room and gave him some good night time cold medicine. I hope it helps. I hope that I can make up for in one or two nights that he needed this whole week. It's always so hard to leave him even though he is taken care by the people whom I trust love and care for him as much as I do, but sometimes Mommy is what you need. I love that kid and want him to be able to have mommy time when he needs it, not scheduled around hospital visits. But I guess right now we do the best we can...My whole family had really enjoyed the last 6 weeks we had out of the hospital.. I think it has been really hard going back. Sorry for the rambling...sometimes my mind just needs a release and this is where I can get a lot of my thoughts out.

But Kaelyn should be home tomorrow and we can start another hospital break. Which is something to look forward to. And Christmas around the corner has caught me unprepared and running out of time to prepare. So this week is going to be the time when Santa fills his sleigh!

Love to all and Happy Christmas,

Angie

Kaelyn doing much better

So Kaelyn was transferred out of the ICU last night around 10 pm to the surgical unit. I was so glad that we didn't have to spend the night in the noisey bright ICU. She is doing really well today. We have been running around, playing and just having as much fun as you can in the hospital. She is going to have an ultrasound today and her biliary drain changed tomorrow. Her blood cultures did grow some positive bacteria, which was expected from the septic shock she went through yesterday. So we are just treating that with IV antiobotics. I'm hoping we get to go home by the weekend.


Love,

Angie

Kaelyn in ICU

Last night Kaelyn spiked a fever around 11 pm accompanied with horrible tummy pain. So we brought her into the ER. As always, by the time we got to the hospital her fever had gone down and she was feeling a little bit better. So we waited for labs to come back and decide what to do. Her liver numbers are all okay still, but her white cell count was fairly elevated and she had a band (immature cells that point to infection) count of 75% which is really high. So we were just about on our way to a room and the ER nurse wanted to do one more set of vitals (thank goodness). Kaelyn's blood pressure was really low, like 50/20 normal is around 110/80 for her. So we had the swarm of ER docs, nurses and PICU fellows in our room watching her for about 2 hours while they pumped her full of fluids and antibiotics and started a dopamine (blood pressure med) drip. Finally her pressures started to come up. She was transfered into the ICU. Right now she is doing so much better. She is totally off of the dopamine and her pressures are stable. She was in septic shock. Sound familiar? She went through this the very first time she had her biliary drain placed. Only that time was much more serious. But when they mentioned that this was what was happening my heart dropped. It was so scarry the first time. Thank heavens that it was not quite as serious this time because we caught it earlier.

She's sleeping right now and we will hopefully be transferred out of the ICU tomorrow. What a day...

CT scan results

Hip Hip Hurray!!! Kaelyn is still cancer free! We braved the snow storm that we had here and went into to Children's for her scan (I still have that Utah blood flowing through me - bring on the snow!). It went wonderfully well. She did not need anestesia which makes it so much easier on her. She is such a big girl. Her oncologist, Dr. Thomson was very pleased with the results. There are three areas in her lungs that they have been watching and all of them are either smaller or unchanged with means that they are scar tissue of some kind. Dr. Thomson also said that the greatest chance of recurrence is within the first year post chemo. And Kaelyn has just past her year mark with no sign of recurrence! There is always a chance of recurrence with Hepatoblastoma, but atleast it is less. I am just bursting! It is really very exciting. She only has to go get CT Scans every six months now and AFP's drawn every three (unless there are liver issues).

I love posting good news! Hope you all had a great Thanksgiving, we sure did.

Love,
Angie

Good news...

Kaelyn is doing so good! Her docs have given her the okay to start preschool! I think I will start her on Monday. She is so excited. It will be so good for her to do some normal three year old things and play with different kids. They also tapered down her prednisone (steroid) to every other day. Which is wonderful! The only issue that we have is with Bob, her JP drain. Dr. Healey thinks that maybe because we have had it to suction that there has been too much negetive pressure not allowing the little leak to heal. So, we have taken off the suction and will see what happens. So far, Bob is still draining but it will take time for the leak to heal.

Kaelyn does have a rountine CT scan and oncology clinic visit scheduled for the end of this month. We have to do this every three months. She also has a routine biliary drain change scheduled for the beginning of December. Hopefully all of this will lead up to a very uneventful, blissfully simple holiday season. If I don't post again before next week, everyone has a wonderful Thanksgiving!

Love,

Angie

PS: I finally posted some pics of the kids from halloween. The other is one that the hospital is using in one of there mailer add campains (my daughter, the super model!)

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

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

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

Out of surgery, in ICU out of ICU...

Busy couple of days!

It has been really hard to get to the computer. And it seems when I finally have time to go update, so does every other parent in the hospital.

Kaelyn came out of surgery yesterday around 2 pm. Dr. Healey evacuated a lot of fluid from her abdomen, including a pocket that looked like it had bile in it. He hopes that area stays dry, if it begins to fill again she might have some sort of leak in her common bile duct. He also cleaned out the blood clots in her abdomen. He could not see any active bleeding, which is good. He closed her muscle layer and let only the skin and fatty tissue layer open. So she is just about fully closed. She only has about an inch wide would, but it stretches across her whole belly. I think she will feel much better with her muscle layer closed.

She was transfered to the ICU after surgery just to watch her overnight to be cautious. She was in a lot of pain and the ICU resident on last night would not increase her morphine drips, he was afraid of compromising her airway. It was a long night. But this morning after rounds her transplant team was a little upset that the ICU folks let her go through so much last night and quickly increased her drips. She felt better after a few hours on the higher does and is resting comfortably right now. We are currently back on the surgical unit out of the noisy ICU (yeah!).

Dr. Healey took her off of her heparine drip two nights ago in preperation for surgery yesterday. So far she is doing well off of it and has not had anymore problems with bleeding (Dr. Healey believes that is why she was bleeing, the heparine). She has had two ultrasound since surgery and her Hepatic arteries Right and left has some flow. So that is good, off heparine with flow. Healey is going to keep her off of her heparine for now since things look okay in there. He believes that as soon as the post-op swelling goes down that we should see even better flow.

She is going to get a blood transusion tonight, her hematocrit is down to 22. So that should help her feel better. And hopefully tomorrow after a good night's rest with the right dose of pain meds she should feel much better.

Love,

Angie

Back to surgery tomorrow

Kaelyn needs to go back into surgery tomorrow. She is having some bleeding and her patch that is covering her wound is not holding. Her abdomen in more distended today, probably from excess fluid and the liver being enlarged. So the patch is being stretched past its limit and is starting to open a little. So Dr. Healey will take her back in tomorrow to investigate where the bleeding is coming from and clean up any fluid pockets he can find. One good thing is that they will be able to close her, or atleast close her a little more.

Yesterday was quite an eventful day. She had her ultrasound in the morning and we discovered that the flow in her arteries was much less, if not even unmeasurable. So later that day they took her in for a CT scan to see if they could find the flow. Thank heavens they did, the right side is still blocked but the left side was showing flow. Dr. Healey is still concerned that it has slowed down though because the ultrasound could not pick it up. Where the last few they have been able to find it right away. So, unfortunately we are back in the waiting game to see what will be the results of slowed arterial flow. Dr. Healey speculated a few different scenarios: One, it could be total Deja Vu from the last liver (not wanted). Two,we could have one good side with working bile ducts and one bad side that would eventually be resected but leave a healthy working liver (better choice than one). Or three, optimistically all could resolve and the bile ducts could be healthy and well and everything working good (best choice, but least likely). So we wait to see what the liver will do.

Hopefully all will go well in surgery tomorrow and she comes back completely closed. She would be so much more comfortable. Even though she is sitting up in bed and playing with toys. It would be great to have her running. One thing I have learned (at least tried) is patience. And the knowlege that God is there every step of the way.

Love,

Angie

More awake...

Kaelyn was more awake yesterday. She was up watching Scooby Doo with Jacob and other cartoons. She did take a nice long nap, which seemed to help her feel a little better. I went home and slept last night, it's my last night at home for a while. Wade is going back to work tomorrow.

Wade said that Kaelyn was up a lot last night due to a tummy ache. They gave her some Zofran (anti-nausea med) and some benadryl. I guess that helped a little. We need to find out why she is feeling sick. Could be due to the fact that she has had nothing in her tummy for two weeks and now we are putting formula in through her NG tube. We did start it out very slow though and only gradually increased it through the past day and a half. Maybe they just need to cut back on the volume for a little while.

Well, I am off to the hospital. Thank you all for your prayers, notes and phone calls. It is really good to hear from you and know that so many prayers are being offered in Kaelyn's behalf. I know that Heavenly Father listens to them all.

Love,

Angie

Out of the ICU!

Good news, Kaelyn was transferred out of the ICU today! She is now on the surgical unit, where we usually stay. Amazingly, her nurse is the same (Annie, one of our favorites) as when she had her first transplant and was transferred out of the ICU. Coincidence? I love it!

Kaelyn is still not feeling too well. She has been very sleepy today. One of her cultures from her breathing tube, pre-extubation, has grown a little bacteria. So we are starting her on yet another antibiotic. So hopefully that will help her feel a lot better.

Her ultrasound looked really well today. Her right HA (Hepatic artery) is still blocked with no flow, but her left HA looks even better. I guess it was a little sluggish before, today it looks as if it is flowing with no problems. Yeah herparine! She does still have a lot of gas in her intestines that may have leaked a little into her bile ducts. Since her common bile duct is attached directly to her intestines some air may have been forced in. But the docs say that this is not harmful to the liver, it will just work itself out.

Kaelyn is also going to have a NG tube (feeding tube, through the nose into her stomach) placed. She just doesn't feel like eating and she needs to take in about 1300 calories a day. I talked with her about it and she said she would rather have the tube than try and eat right now, precious girl. She too wise for her 3 years...

So, I am looking forward to a little less commotion in our room tonight - and hopefully a little better sleep.

Angie

Extubated!!!

Yeah! Kaelyn was finally extubated on Wednesday. That is why I haven't had a chance to post any new updates. She really needed me wednesday and that night she hardly got any sleep so I was not good for anything yesterday. So, this morning after a full nights rest (Wade stayed the night with her while I came home) I am finally updating the site. I apologize for missing two eventful days.

She still could not talk much, so it was frustrating for her not to be able to get her point across. Yesterday so could get out a few more words, so hopefully today she will be able to talk more. We need to get her to start eating. I guess at 4 am the nurses tried to put an NG tube down her nose (why they thought 4 am was a good time puzzles me, especially since she was sleeping) but Wade put a stop to that. They haven't even let her try to eat on her own yet. Urrr...that makes me upset. So thankfully Wade protectively said we need to let her try first. I think they are going to give her today to try...I know we can get her to eat, she absolutely hates NG tubes.

We might be transferring to the regular floor today, yeah! Better sleep for all!

They started doing ultrasound every other day, so yesterday was our first day without one. It makes me a little nervous, but there really has been no change in about a week. So, it makes sense.

Today should be a good day. It has been so fun having our Kaelyn back. She is laughing and trying to play and sing (with no voice, it's pretty cute!). And she also has been loving to try and blow bubbles (little does she know that it is therapy for her lungs!).

Love to all,

Angie

Clarification...

Okay, so when Dr. Healey came in today to talk to Wade and I about the situation we both felt a whole lot better. He explained that the artery splits into two different branches once inside the liver. Right now the left branch of the Hepatic artery is flowing nicely, while the right has no visible flow. Because the thrombosis is in the interior of the liver he cannot go in and revise it. He also does not believe that putting in any TPA (mega-heparine) would do any good because it would all follow the left branch where there is no blockage. So really, surgery would not be in Kaelyn's best interest. Dr. Healey said that there is a chance that the heparine she is currently one could unclog the artery, given time. So we will just watch and see. He also said that it is a very good thing that one branch of the hepatic artery is flowing. She could have a very good, if not normal, life if that left lobe of the liver remains stable with good blood flow. If the right side never clears it would eventually shrink while the left side would grow to compensate. She would possibly have to have a resection of the bad lobe, but Dr. Healey said that is totally fixable.

There is hope!

Angie

Not going to OR

Dr Healey and Reyes have decided to not take Kaelyn back into the OR to try and clear the artery. They believe that the time for now is to just wait and see if the flow will return. This is extremely frustrating, though I know that they really cannot do much about it. I kindof glazed out the rest of rounds this morning. I think my brain just could not handle any more. So I am going to have a dr. come in and explain to Wade what was decided, because he really needs and wants to know everything that was said.

Kaelyn did have a fever all last night and her tummy was red and hot to the touch. So they sent off more cultures to see if she has an infection. She already has a yeast infection in her abdomen. So they broadened her antibiotic coverage to try and cover her for anything. All in all she is on 5 different antibiotics.

Her DNA testing will come back on Thursday to see if she has any kind of clotting disorder. Her Hemetologist (which coincidentally is the same as her Oncologist, Dr. Thomson) came in yesterday and mentioned that she thought that possibility of her have coagulation disorders is rare considering she had her port in for almost two years with no problems. So we will see.

I believe that it is all in Heavenly Fathers hands now. It has always been, but I am realizing that we have done all we can. Please continue in prayer for Kaelyn.

Angie

Clot...

Kaelyn came out of surgery last night around 8 pm. I spoke with Dr. Healey, he said that when he looked at her hepatic artery before trying to close her that he noticed the flow was very sluggish so he had ultrasound come in to the OR to take a look. By the time they got there the flow had stopped completely. So he did a complete revision of her hepatic artery. He took a portion of donor artery (the same donor that she received her liver from) and made a new connection. After he did this there was good blood flow. He almost closed her, leaving just a small portion of the abdomen open. He didn't want to put too much pressure on any of the organs by closing her all of the way. He suspects that she does in fact have a clotting disorder. So he is going to consult with the hematologists to see if they have any suggestions on keeping her arteries clear.

This morning ultrasound came in and found that it looked like the artery may be blocked once again. I have not heard what Dr. Healey would like to do. He really wants to give her time out of the OR to stablize, but with the likelihood of another clot I don't know what he will do. Last night when she came out of the OR she spiked a fever and her blood pressure dropped pretty dramatically. Her nurse said that it took a good chunk of the night to get her to stablize her pressures. But she is fine now, she does still have a fever. But that is not out of the ordinary for someone that has been in the OR so many times.

Please pray for Kaelyn...

Angie

Thrombosis, again...

Kaelyn went into surgery again today with the expectation of closing her tummy. Dr. Healey got in there and once again found a blood clot in her hepatic artery. So he has revised it. The last update I heard was that they were waiting for the ultrasound tech to come and make sure it was working. She has been in surgery for close to 7 hours.

They just don't know what to do to keep her from clotting. She is on her theraputic dose of heperine. It is a constant drip. She should not be clotting. They are running some tests to see if she has a clotting disorder, but those results will not be back for about 4 days. Even once we get the results back, I don't know what else they can do to prevent her from clotting. Maybe they have something a little more agressive than heperine. But we also don't want her to bleed either. Arhhhhh!

I will write later after I have had a chance to talk to Dr. Healey. Maybe he has some advice or insight.

Love,
Angie

No surgery today...

Well, Dr. Healey came in this afternoon and thought that Kaelyn needed to get some fluid off before he could close her up. So, we are going to wait until tomorrow and see how she is doing after a dose or two of lasix. She really doesn't look that puffy to me, but her weight is up a little from yesterday. I guess we will see where she is at in the morning.

We have to take her off of the Precedex (the good sedation) tonight, so it may be a long night. But thanks to Wade's mom, I am ready. She stayed with Kaelyn last night so Wade and I could go home and be with Jacob and get a good nights sleep in our own bed. It was hard to leave her, but very good to get home together.

Love to all,

Angie

Steady...

Kaelyn is steadily improving. They think that she will be able to be closed tomorrow and possibly extubated after that! It is very exciting to think that we may be able to see Kaelyn's personality return, even if she will be a roaring bear it's so much better than nothing at all.

They did take her off of her paralytic today and she is opening her eyes and squeezing my fingers. She also can shake her head yes or no to simple questions. That makes my heart feel a little better.

I think that things are finally starting to improve.

Love,

Angie

Resting...

Kaelyn is having a day of rest. She hasn't had much going on today. Which is good for her, give her some time to heal and get rid of some of the excess fluid in her body. The docs say that when her edema goes down some they are going to close her abdomen the rest of the way. That could possibly be in a few days. Her LFT's are slowly coming down, another good sign that her liver is beginning to heal. I did not get a chance to view her ultrasound today, but the surgeons are assuring me that it should be fine based on what they saw in the OR yesterday.

It is so hard for me (Angie) not not hear Kaelyn's sweet little voice and to see her so still. I miss her! I know this is all for her good, but I can't wait until she is talking and able to get around a little. Hopefully next week.

I am home tonight with Jacob, while Wade is spending the night with Kaelyn in the PICU. Jacob started 1st grade yesterday! He really enjoyed it and said he made one new friend, though he couldn't remember his name yet! He likes his teacher. He said most of what he did today was learn more rules. But he had PE yesteday and tomorrow, his favorite subject!

Love to all,

Angie

All is well...

Kaelyn is now out of surgery. Dr. Healey said that everything really looked pretty good. The blood they found in her abdomen was old, so there is not any place that is currently bleeding. Her artery that was showing high frequency in the ultrasound looked pretty stable. It was slightly adhered to the liver wall so they unstuck it. He also said that since her artery is connected directly to the aorta that it most likely will have a higher frequency blood flow. So also is carrying a lot of extra fluid which makes your blood pressure higher too. All in all, she looks good in there and her liver looks good. Very encouraging. They were able to close her a little bit more but not completely. Slowly but surely she will have a closed tummy.

Wade and I are both breathing heavy sighs of relief, and prayers of thanks.

~Angie

Back in surgery...

Kaelyn's ultrasound this morning showed some bleeding in her abdomen. Also one area of the hepatic artery had really high pressure. Dr. Healey thinks that probably with the extra fluid in her abdomen the artery is getting compressed or stretched or even rolled so the blood has a smaller area to flow through. There is visible flow though on either side of the trouble area, which is a good sign. He does not think that there is a clot. Her bleeding is probably being caused by the high amounts of heparine she is being given to lessen the risk of clotting. He is going to go in and clean up the extra blood and look for any place that it may be coming from. It may be hard to find, her blood is so thin that it could be leaking from any place. Her hematacrit dropped from 30 yesterday to 20 today. They usually transfuse her at around 23. So she will be getting some blood and platelets today also. Dr. Healey mentioned that he thinks things will get better soon. Her LFT's (Liver Function Tests) are getting better and the blood flow getting throught the trouble spot is a good sign.

She went into surgery around 10:30 am and it will be a few hours before she comes out.

Love to all,

Angie

Not so bad...

Okay, we just talked with Dr. Reyes. He says things are not as bad as the radiologist lead us to believe. Yes, the left side of the liver does not look good, but there is still blood flow to it. It is probably in trauma and he hopes that it will recover. There is no need to go back into surgery today to check things out. They are just going to keep her well sedated and paralyzed so as not to irritate things. They are also going to keep her on her heparine for a long time, probably a month at least. They want to get her belly swelling down so they can get her closed. They are also going to continue to do Ultrasounds for the remainder of the week if not longer.

So, breath a little friends...her right side is functioning well and hopefully her left will follow suit with a little time.

Love,
Angie

Oh boy,

Well here goes a doosey of a post. Kaelyn did in fact have a blood clot in her hepatic artery. This in one re-run we did not want to partake in. It was fairly hemolized, meaning that the clot had been in there for a little while (probably started formin on sunday after they discontinured her herparin dirp). She came out of srugery around 9 pm and we sat and spoke with Dr. Healey for a little bit. He was wondering if she may have some sort of clotting disorder where she clots easier than other people. They are going to be doing some testing for that . It also looked like all of the swellin and extra gas in intestines was causing all of the vessels to be stretched and thus narrowing the passage for blood flow. She was moving around a lot and that could have caused some more swelling and dislodging of clotted blood to form a more organized clot. Today she is highly sedated and medically paralyzed just for her own protection.

She has a fever and had fairly low blood pressures overnight. So they have given her extra fluid to counter act that. It has brought her fever down and her blood pressure back up. She is still running a low fever, they have cultured her and are waiting on results. She is currently on about four different antibiotics, so hopefully she is covered for what may be infecting her.

We thought her initial ultrasound went well. The tech (Jenny, our favorite) saw adequate blood flow in the hepatic artery and other vessels. The bile ducts did look dilated, which is not good, but usually can be reversed if the blood flow was not stopped for too long. But then Jenny came back with the radiologist and wanted another look at her liver's left side. They believe the left side has taken significant damamge. Where there is enough blood flow the ogan lights up well and looks brighter. Her left side was very dark, which means there may be litterl or no blood flow to that side. This is not good. They are going to report this to Dr. Healey and Dr. Reyes and they most likely will want to take her back to surgery to get a better look at what is going on. We should hear later today when and what they are going to do. One good thing is that her right liver side looks pretty good and they may be able to just resect the left side and leave her will a healty right lobe that will grow to meet her needs. We just have to wait and see.

Please pray for Kaelyn,

Angie

2nd update

Dr. Healey ended up revising Kaelyn's hepatic artery. The ultrasound post revision showed good blood flow. He is not going to be able to close her completely. Her wound will be not as big and hopefully he will be able to close her in a few days.

She is still in surgery and we are waiting to hear from Dr. Healey what happened to the hepatic artery to cause it not to function.

Surgery update

The surgical nurse just phoned us. Some suprising and unsettling news. Kaelyn's hepatic artery is not functioning as it should. They did not say what exactly was going on, but they are doing some exploratory surgery and possibly revising the artery. Wade and I are just sick thinking that Kaelyn may have to endure the exact same thing that happened with her first surgery. Hopefully all will be well and her hepatic artery will be fine. I know that in Dr. Healey's hands things will go as well as it can. I also know that our little girl is surrounded by more than just the surgical team...Heavenly Father knows our Kaelyn and he is comforting us all.

Love,

Angie

In surgery to close belly

Kaelyn went in at 4:30 pm to have Dr. Healey close her belly. She was very restless leading up to this. We, of course, were told that she would go in around 12. So we were holding off on starting her sedation until afer surgery. She was so uncomfortable and not wanting to be in that bed that we finally gave her some benedryl (I don't know why we didn't think of that before) and it settled her down. Moments later they finally came to take her in to surgery.

She is still in right now, hopefully we will have an update soon. Dr. Healey was fairly confident that he could close her, but if he can't he will move the abdominal muscles closer together and sew her as far as he can. They don't want to squish, for lack of a better word, her organs and lungs. He said that there hasn't been a case yet where he couldn't close a kid. And I thought, well this is Kaelyn we are talking about! Ususally the exception to every rule! But I am confident in him also, if we can't close her today atleast it will be a step in the right direction.

Angie

Day 4 in ICU

Kaelyn is doing okay. Her abdomin was a little more swollen than the day before. So last night they gave her some lasix to help her get rid of some of the excess fluid. It seemed to work, this morning her belly was one inch smaller than last night. Yesterday was a battle after she was taken off of her sedation. She was constantly moving and needing mommy. We finally figured out a regimen of benedryl and a suppository sedation that seemed to help her get some sleep last night.

Hopefully this afternoon they will take her into surgery to close her belly. If she is still too swollen they may still take her in and change the dressing and place additional drains to try and get rid of the extra fluid. If they can close her belly than she will probably be extubated either tonight or tomorrow, if no closing she will continue to be intubated until they can close her.

I will post again when they take her into surgery.

Love,
Angie

ICU day 3

Kaelyn is doing fairly well. Her blood pressure was on the rise yesterday, but as soon as they were going to give her some medication for it, it went down on it's own. I think Kaelyn knew that they were about to add one more med to the multitude and refused to let them (*smile*)! She is such a fighter.

Today they have to take her off of her sedation meds, she can only be on it for 48 hours and then she needs a 24 hour break. They will take her off of it at about 1 pm. I think she will not be happy, and either will we. I hope their plan of increasing her Morphine and Adavan will be sufficient. I guess we will see.

They are still going to try and close her tomorrow. But her tummy is still pretty swollen, though the rest of her is pretty dry. She looks a lot better than she did when she first came out of surgery. All of her LFT's (Liver Function Tests) look great. They are not in the normal range of course but they are so much better than they were before transplant 2.

I will post later,

Angie

Day 2 in the ICU

All is going really well today. She has slept well and is very much more relaxed than yesterday. Her ultrasound this morning was good. It looks like her swelling is going down and her veins and arteries are a little less stressed. Blood flow is good and her labs look promising.

We are still on track to hopefully getting her tummy closed up on monday and then possible extubation on tuesday or wednesday.

Love to all,

Angie

Sedation, finally

Well, we finally were able to get Kaelyn sufficiently sedated around 1:30 pm. She is peacefully sleeping and no longer trying to pull out all of her tubes. I love that she is so fiesty, but right now she really needs to rest.

Everything is still looking good with our pretty little girl and her new pretty little liver!

Love,

Ang

ICU day 1

Kaelyn is such a fiesty, fiery little chica. They have been giving her sedation every hour all night long and it has done very little. She wants that breathing tube out and her hands free. Every time she hears mine or Wade's voice she opens her eyes and tries to talk and cry. She also is arching her back, mind you all of her abdominal muscles are severed at this point, trying to sit up and get away. This is all a very good thing, though hard for a mommy to watch. Thankfully this morning at rounds the doctors agread that she needs to be more sedated so she will not injure herself. So they are starting her on a different sedative that will basically knock her out for a few days. They need to keep her intubated until they can close up her belly, which will probably be on Monday. She is still fairly swollen, but they expect that through the weekend it will decrease so they can sew her up. The reason she has so much edema is because they had to clamp her native veins and arteries for such a long time (70 minutes)in order to sew in the new liver.

This mornings ultrasound was very promising. All of the blood flow to the liver is working. She is producing bile and her liver function tests are actually very good at the moment. We could not ask for more.

So, the plan is to try and keep her asleep so her body will recover and the edema will go down. Monday will hopefully be when we can close her abdomen and extubate her.

Love to all!

Angie

Kaelyn is in the ICU!

Okay, Kaelyn is now getting set up in her room in the ICU post surgery. Wade and I just spoke with Dr. Healey. Here is a recap of what he said: He was really pleased with how well it all went. The old liver was really bad and degraded so it took a while to get it all out. The new liver is from a pediatric donor and Dr. Healey said it was the best possible match for Kaelyn. And it was worth the wait to get. He said that they had to reconstruct the bile duct and attach it directly to the intestines instead of the natural flow through the main bile duct because of all of the degradation of the ducts. They also found a huge collection of bile in the old liver so they are going to keep her on antibiotics for a little longer than they normally would just in case. They also reconstructed a connection from her aorta to the liver because of the last thrombosis of the hepatic artery. But all looked extremely well on the post surgery ultrasound. They were not able to close her up just yet becuase of the length of the surgery. She is swollen and needs a little time to get off the extra fluid. Healey said that possible next Monday or Tuesday they could close her up. She is intubated of course, but I guess she has already opened her eyes and tried to move around, they quickly drugged her up to stop her spunk for her own safety. But it is a really good sign that she was alert. She will be on some heperine for profalactic reasons to fend off blood clots (that's what started all of our last bile duct problems - no blood clots!).

I could not stop myself from giving Dr. Healey a long overdue hug! He is such a miracle worker. I long to be able to give my Heavenly Father a hug for the wonderful blessings he has given us.

Love to all!

Angie

6 pm Update

Still in surgery. They are meticulously sewing the new liver. The nurse says Kaelyn is very stable and doing well. Hopefully she will be in recovery in a couple of hours.

4 pm update

Kaelyn is still in surgery. She is stable. At 3:30 pm the surgeons started connecting the new liver. It will probably be a few more hours to go.

10 am and 12 pm update

As of 10 am this morning Kaelyn was finished with all of the prep work and they were beginning to open her up. As of noon today, all was well and they were removing the old liver. Dr. Healey is performing the resection while Dr. Reyes will be transplanting the new liver.

So far, so good...

She is in, finally...

Okay, hospital time is fairly obnoxious! We arrived yesterday afternoon about 4 pm. They first told us that surgery would start at midnight, then 4 am, they 6:30am and finally they took her in at 8 am. But I guess that is just how it goes. I am just happy that she is finally getting her new liver. When we asked Kaelyn what she was doing today she said, "Getting my new liver!". It was very cute.

Okay will try to update this site every two hours or so. That is when the nurse in the OR will be giving us the newest updates.

Love you all,

Angie

TRANSPLANT DAY!!!!

Today at 2:00 pm we got the call we have been waiting 5 months to get. We have a suitable donor, come into the hospital it's transplant time! So, we have been in here at Children's for quite a few hours just waiting. We were just told that the surgery time is 4:00 am tomorrow morning. I will keep this site updated as soon as I can.

Love to all,

Angie

AFP rising..

Well, not so great of news today. Kaelyn's AFP was up to 14.9 today compared to <0.8 two weeks ago. The surgeons are not going to worry about it though unless they see a much greater increase. But we are going to be checking her AFP levels weekly now. She is still active on the transplant list and will be considered for any acceptable offers. But it sure is a worry on mine and Wade's hearts. Her AFP has been stable at <0.8 for 9 months, why is it rising now? I guess only time will tell.

Please keep praying for sweet Kaelyn.

Love,

Angie

Words of Wisdom and Comfort

A friend of mine whose son just had a liver transplant two weeks ago because of hepatoblastoma found this article from President James E. Faust, who was a member of the quorum of the twelve at the time. ("the refiner's fire" Ensign May 1979, this is just an excerpt). I really felt that it was powerfully written and even more powerfully received.

"Here then is a great truth. In the pain, the agony, and the heroic endeavors of life, we pass through a refiner’s fire, and the insignificant and the unimportant in our lives can melt away like dross and make our faith bright, intact, and strong. In this way the divine image can be mirrored from the soul. It is part of the purging toll exacted of some to become acquainted with God. In the agonies of life, we seem to listen better to the faint, godly whisperings of the Divine Shepherd."

"Into every life there come the painful, despairing days of adversity and buffeting. There seems to be a full measure of anguish, sorrow, and often heartbreak for everyone, including those who earnestly seek to do right and be faithful. The thorns that prick, that stick in the flesh, that hurt, often change lives which seem robbed of significance and hope. This change comes about through a refining process which often seems cruel and hard. In this way the soul can become like soft clay in the hands of the Master in building lives of faith, usefulness, beauty, and strength. For some, the refiner’s fire causes a loss of belief and faith in God, but those with eternal perspective understand that such refining is part of the perfection process."

"In our extremities, it is possible to become born again, born anew, renewed in heart and spirit. We no longer ride with the flow of the crowd, but instead we enjoy the promise of Isaiah to be renewed in our strength and “mount up with wings as eagles” (Isa. 40:31)."

"The proving of one’s faith goes before the witnessing, for Moroni testified, “Ye receive no witness until after the trial of your faith” (Ether 12:6). This trial of faith can become a priceless experience. Stated Peter, “That the trial of your faith, being much more precious than of gold that perisheth, though it be tried with fire, might be found unto praise and honour and glory at the appearing of Jesus Christ” (1 Pet. 1:7). Trials and adversity can be preparatory to becoming born anew."

"The Divine Shepherd has a message of hope, strength, and deliverance for all. If there were no night, we would not appreciate the day, nor could we see the stars and the vastness of the heavens. We must partake of the bitter with the sweet. There is a divine purpose in the adversities we encounter every day. They prepare, they purge, they purify, and thus they bless."

"When we pluck the roses, we find we often cannot avoid the thorns which spring from the same stem."

"Out of the refiner’s fire can come a glorious deliverance. It can be a noble and lasting rebirth. The price to become acquainted with God will have been paid. There can come a sacred peace. There will be a reawakening of dormant, inner resources. A comfortable cloak of righteousness will be drawn around us to protect us and to keep us warm spiritually. Self-pity will vanish as our blessings are counted."

Please consider these words as you go through life and encouter trials and difficulty. There is a reason, we may not understand or even want the trial, but it is for our spiritual survival. I know we have wondered countless times, why...why Kaelyn, why our family, why any family...but if we endure we can achieve a "glorious deliverance" and we can receive a "sacred peace".

We are now home from the hospital. And all is well at the moment. Relish in the good days and battle through the bad. Soon Kaelyn's transplant will come. I will post as soon as we get the call.

Love to all,

Angie

False Alarm

This morning at rounds (Kaelyn is in the hospital for a blood infection, she is fine and doing well now) Dr. Reyes, head of surgery, said that today may be the day for transplant. They had a potential donor. We were all so excited! They just had to get labs and rush the donor to the OR and check out the organ. But, unfortunately, the organ was not suitable, so no transplant today. It was disappointing, but this also means that the time is very soon we will get a suitable organ. So, disappointment is directed into excitment and anxiety. I think it will be soon. She also was upgraded once again on the list to a 30 from 24. This puts her at the top of the list for her blood type.

I know this post is very disorganized but so is life right now! Love to all, keep us in your prayers.

~Angie

List upgrade!!!

Kaelyn's docs applied for an upgrade on Kaelyn's position on the Transplant list and it was accepted! Her PELD (Pediatric End Liver Disease) score is now a 24. That is a bump from a 2. This is really great news! We are hoping to get a call soon for her transplant. There are only about 15 people total, adults and children, on the list at this score compared to the 200 or so from when she was a 2.

So, keep those fingers crossed and prayers going for our little angel. Hopefully, she will get over this mountain on her journey soon with a new, functioning liver.

Love,

Angie

Miraculous Utah Trip

Well, with all of my complaining in the last post you would have thought we were never going to get to go on vacation. We are home now, after a wonderful trip to Utah to see mine and Wade's family. Kaelyn did amazingly well, no trips to the hospital for the entire 10 days! It is truly a miracle considering how the week before went!

We had a great time. The kids got to enjoy a classic Tooele, UT 4th of July complete with the parade full of army vehicles and fire trucks, the Rodeo (where Jacob did awesome riding a sheep for the first time!), and fireworks! We even got to watch a thunderstorm full of flash flood warnings! It was really great. The kids and Wade were able to go fishing with my dad and actually caught four fish! Jacob loved that! It was wonderful getting to see all of the family. My grandmother unfortunately took Kaelyn's place in the hospital, but seems to be doing a little better today.

It was so great to have a change in pace and get away. I feel much more able to jump back into the battle.

Love to all!

Angie

Anyone for a tube change?

Biliary drains are really annoying, if anyone is wondering. They clog up with the stickiest gunk, bile, and then give Kaelyn all sorts of woes. We went in last Friday for a tube change, and by Sunday it was already clogged. So I think we will be going in again today or tomorrow whenever they can get us in. The IR Doc that usually performs her exchanges is out on vacation for two weeks and there is no one else at Children's who does it. Is that crazy or what! So they have to try and schedule one of the University of Washington's IR docs to come over. So that means we will probably have to be inpatient and just wait until he has an opening. Can you tell I am feeling a little jaded today, sorry. I think the reason I am crazy today is that we are trying to go to Utah to visit my family, including my grandmother who was just diagnosed with cancer, in a few days and it is feeling almost impossible to get Kaelyn to a place that she could enjoy the trip and not have to spend it all at Primary Children's in Salt Lake City. So please pray for Kaelyn that her biliary drain can remain stable for atleast a week.

I will let you all know how the next week plays out.

Love,

Angie

Yet another infection....

Kaelyn and I have just come home from a two week stay at Children's. She had another 104 degree fever and we rushed her to the ER. She was admitted and her blood cultures came back positive with Citribacter bacteremia. In Laman's terms, her PICC line was infected with a really nasty bacteria. This caused her to have whats called ascites, or excessive abdominal fluid. The citribacter causes your blood vessels to be "leaky", so all of the normal fluid that is in you blood leaks out of the vessels into your body. The poor thing gained 6 pounds in water weight in only 2 days. She was so uncomfortable, it was awful. We gave her Lasix (diuretic) and Albumin (the portion of the blood that acts as a sponge to keep the water within the vessels). It took about 4 more days to get off all of the excess fluid and for her to feel better. We also had to take out her PICC line. So, she had to endure multiple IV's in order to get her IV antibiotics. Finally after about a week and a half on antibiotics the surgeons decided to put in a new central catheter line called a Broviac. It is basically like her old port, except it is external like the PICC line. It should last longer than the PICC and hopefully we can avoid infections like the ones she has had over the past few months. So, with the placement of this new line we were able to come home. Now I can administer the IV antibiotics at home. It is so much better to be home. Kaelyn loves it! She ran around the whole house just singing and dancing. She also could not wait to be home "and be a family" she said! She also said on the way out of the hospital "Mom, we're outta here!".

So, life should get back to the Perry form of "normal".

Love,
Angie

Kaelyn is still having quite a bit of pain from her enlarged liver and spleen. They seem to be taking up all of her abdominal space. This means her stomach and bottom portion of her lungs are being squished. She had a CT scan a few weeks ago and they noticed that one of the three nodules that presented themselves in the previous scan was enlarged. The other two were smaller or gone all together. The docs are thinking that this is probably another lymph node that is just enlarged from all of the infections she is still recovering from. So, instead of doing a biopsy of the nodule we are going to wait a month and rescan her to see if it had reduced in size any. She also is able to stay listed. If a offer for a liver comes in before we are able to rescan her we will just have her scanned right before her transplant to insure that the nodule has reduced.

This is all very relieving for us, we did not want to put her through another biopsy so close to the last one. The docs also mentioned that her name has come up a couple of times when an offer has come in and they think that she should not have to wait too long. I am not sure what that means in surgeon talk, but I am guessing that it will be a couple more months.

I also rescheduled our trip to Palo Alto for the 22nd of June. That is the soonest that they could get her in. Maybe a liver will come in here before then and we will not have to worry about the trip. Wouldn't that be nice?!

Well, we are doing all we can to keep Kaelyn comfortable while we wait. She still has her sunny disposition and loving spirit. I don't think anything could take that from her. She is so strong.

Jacob only has three weeks left of school. I can't believe it! He will soon be a 1st grader. Time sure has a crazy way of slipping out of view! He is really growing up and such a kind and caring kid. I couldn't ask for better.

Love you all!

Angie

Port-a-cath is gone...3rd Birthday!

A couple of weeks ago Kaelyn started having really high fevers, 104 degrees. I took her in to the hospital and they ran some blood cultures. The result was that her port-a-cath was infected with staff and strep bacteria. It was not responding well to the antibiotics so in she went to the OR to have her port removed. This is not something that we wanted, but it had to go. This was the only way to clear up the infection. The surgeon said that they removed about 8 cc's of puss, which is almost two teaspoons full. They were pretty surprised that it was so infected. Because of this they could not close her wound. We need all of that infection to come out. We stayed in the hospital for about 8 days and went home with a PICC line (a peripherally inserted central catheter) in her arm so we could continue the IV antibiotics at home for another 10 days. She also came home with an open would were her port was removed. We have to change the dressing and repack it once a day with antimicrobial packing. It is starting to heal and look better. She still is not feeling well though. She is complaining of pain constantly. So I have a call into the docs to see if we can help resolve or atleast find out what is going on. She needs some relief...

On a more happy note! Kaelyn had her 3rd birthday on Thursday! It was very exciting. She had a barbie princess cake and all of her grandparents and many of her other family here! She was so excited about the scooter she got that she did not want to come back inside to blow our her candles and have cake and ice cream! It was so cute!

Love to all,

Angie

Finally listed!

On Monday of this week Kaelyn was finally re-listed for her second liver transplant. Hooray! It is so funny to look at the difference in emotions from the first time she was listed to this second time. The first time was so stressful and frightening. This time I am so relieved and happy. Anxiety is always a part of waiting for the day to come, but it is less this time. I know what to expect and how to handle the recovery and medicines.

Wade and I have also decided to dual list her in California. This will hopefully decrease her wait time. Kaelyn and I are heading to Palo Alto, CA next Wednesday and will stay until Friday. We will meet with the whole transplant team there at Lucille Packard Children's Hospital and get her listed there also within the next week or so.

I do hope that her transplant happens close to home, but if an organ becomes available in Palo Alto than we are there in a heartbeat.

Well, love to all.

Angie

Wonderful, fantastic news!

No Cancer!!!!! Kaelyn's biopsy went well, the pathology of the nodule removed was that it was not hepatoblastoma. It was a lymph node that was enlarged probably due to the RSV that she had last month. It also was not in the lung, it was located on her diaprahm. That meant that she did not need a chest tube after surgery, so her recovery time was much quicker. We were in the hospital for 8 days though. They placed a second bile drain which has helped her immensely!

So, wonderful news! We are so very happy after our two weeks of extreme worry. She is doing very well right now. She is home and happy! She most likely will be listed for her retransplant on Monday of next week. More good news!

Love to all,

Angie

CT Results

Well, yesterday afternoon I got a call from Dr. Healey, Kaelyn's liver surgeon. He told me some not so great news. There are three new nodules in Kaelyn's right lung. The last one's were in her left lung, it is still clear. She is going to have a needle biopsy of the nodules tomorrow so we can determine what they are. But I think we all know what the pathalogy report will say. This is the nature of hepatoblastoma, it comes back. We should know the results by friday at the soonest.

So the re-transplant has been put on hold until we know what is going on.

Please just keep Kaelyn in your prayers. We all could use a little heavenly comfort right now.

Love to all,

Angie

Going to be re-listed!

Well, our meeting with the transplant surgeon and liver specialist went really well yesterday. We said that we thought it was time for Kaelyn to be re-listed and they agreed! Wade and I were all ready for a battle, but it did not happen. We were so relieved. She just needs a few screening tests in the next couple of weeks and then she will be listed. It is exciting to be over the first phase of waiting, now we are going into the second phase of waiting on the list. She will not be as high on the list as she was the first time around, so it may be a few months (possibly 6 months or so) before she can receive a transplant. But, she honestly is doing very well and I think she can make it that long without too much difficulty. We will just keep going in for her drain to be changed out as often as needed during this period of waiting. Of course we will still be checking her AFP about once a month to screen for any cancer cells that may be growing. So far so good on that front though. Her AFP has remained stable at <.8 for three months. YEAH!!!!

Anyway... We appreciate all of you for your prayers and notes of concern and encouragement over the last two years. This website has been very cathartic to me. I love to read your notes on the guest book, so keep on writing!

Love to all of you,

Angie

Newest update...

Kaelyn unfortanetly was in the hospital for the last days with RSV. It's a respitory virus that is very dangerous for little children (under 3 years). She has a very high fever and a wheezy cough. But we are home today and she is doing much better.

We are going to start her on some nutritional IV feeding probably next week. She is just not growing and gaining weight as she should. But, I don't think that will slow her down! We are talking with the transplant folks on Monday about relisting her. So, that will be a big day for us. Hopefully all will go well and she will be relisted for a new liver within the month.

I thought that everyone would like to see the latest portraits that Kaelyn had taken. So here they are!

Love,

Angie

Pics

I hope you all enjoy the pictures I just put up. They are from Kaelyn's Make-a-Wish day and a couple from Christmas.

Kaelyn is still doing fairly well. Her AFP is <.8 and is has been in that range for over a month. This is good news so far. The plan is still to wait for 3-4 months to see if her AFP will rise or not. If it remains stable then she is finally be eligible to go back on the transplant list for a new liver.

Besides her being a little yellow, which yellow is her favorite color, she is doing great!

Love you all!

Angie

Doing good...

Hello all!

I do apologize for the long interval between posts. It has been a very, very busy two months.

Kaelyn did have her lung surgery on the 16th of December. The surgery itself went as expected. Dr. Healery removed two nodules and the old staple scar from her previous lung biopsy. He felt that if the cancer were to come back that the old staple scar would be a prime place for it. Kaelyn was in the ICU for two days post surgery and then moved to the regular surgical unit for three more days. Lung surgery is so painful though, so she was in a lot of pain until we could remove the chest tube. As soon as that was removed 4 days post surgery she felt so much better. The pathology report from the biopsied nodules came back not as clear as we hoped. One of the three came back with viable tumor. That was hard news for Wade and I, we both felt that since her AFP was so low that the cancer would be gone. But, we take comfort in the fact that it was removed and thus is no longer able to grow or spread.

When we got home, we all went through a bunch of colds it seemed to take us the rest of the month to get better. But Christmas was so much fun! The kids just glowed all day. They both think that Santa is their favorite person in the whole world! We also were blessed with the kindness of others - people who are anonymous donated so much to our family during Christmas. It was very humbling and inspiring. It was definitely a fun couple of days. Kaelyn still asks when is Christmas coming back!

We then had three drain changes in three weeks. It was a little exhausting for all of us, especially Kaelyn. I think this last change has worked for almost two weeks now, so hopefully she will get a break from the hospital scene.

The other fun thing we have experienced this month was Kaelyn's wish being granted by the "Make-a-Wish" foundation. It was so much fun. They came last friday with a limo at our door to take us on a transportation extravaganza! They brought us to Kenmore air to take a ride around Seattle in a Sea Plane! That was quite an experience!! Kaelyn and Jacob both really enjoyed it. Our next destination was to take a ride on a 60 foot yacht with all of the amenities! It was a beautiful boat and the captain let all of the kids take a turn driving - that was a little hair raising at times! The kids got to stand out on the back deck of the boat and throw crackers to the eager seagals. Kaelyn talks about that a lot and laughs about the seagulls. Our last stop was a rowing club on Lake Union. We had a pizza party there and the kids all got little goody bags, we also got to go row on the trainer boat. It was very fun. Our final suprise were many different gift certificates for things like a train ride, the zoo, a trip up the Space Needle with dinner included, the Pacific Science Center and and IMAX movie. It was so overwhelming and suprising! We are going to be busy for a very long time!

Well - I hope this post finds you all well and happy. I am going to try and post some pictures of Kaelyn's Wish soon. Love to you all!

Angie