ACK! Strep is in the House

Here's hoping that you all had a wonderful Thankgiving and are enjoying the Christmas season.

As for us, 2/6 of the Kraft household has strep throat. Fun times! Right now Patty and Caleb are on anti-biotics and I have a sore throat coming on. The three girls haven't shown symptoms yet but it'll be hard for them to avoid it since strep is so contagious. Still, we are praying they miss this round. I'm just hoping everyone is okay by Christmas.

Other than that, Patty and Sarah returned home last Friday afternoon. Our weekly lab visits have resumed so we will be headed down Wed night for those.

May you all be blessed this Christmas.

Acute Liver Rejection? Going once, going twice...

I just spoke with Patty and Dr. Horslen is 99% sure Sarah is having acute liver rejection. This isn't completely a surprise. She has been off her anti-rejection med for several weeks now, in order to fight off the EBV. From what Dr. Horslen has said, they are more concerned with the EBV, and what it can do/cause, so they would rather eliminate that and deal with a rejection if it comes.

The biopsy could come back tomorrow and show negative (PLEASE!) but Patty and Sarah are going to be admitted for at least tonight and then tomorrow will reveal if its going to be the full meal deal of 4 days.

Sure, it's frustrating and I would be lying if I said it wasn't. What bugs me the most is that tonight is Katarina's first Christmas concert as part of her preschool class and Patty will be missing it. This is when I need a blasted video camera! Guess I'll have to add that to my Christmas list.

Thanks for your continued prayers. Patty is feeling a little bit under the weather and is exhausted. Please lift her up and that Sarah would not be fussy during her stay at Children's.

Merry-Go-Round

So I'm the one who actually gets the call this afternoon from Marsha in transplant clinic that Sarah will need another biopsy (yes, I know, hard to believe, huh?) Tuesday morning. It appears the EBV has been vanquished because now her liver numbers have risen - AST 356, ALT and GGT in the 100s.

Our tired girls, Patty and Sarah, head down very early for a 730 ultrasound appt followed by an 11am biopsy. In all likelihood they will head back home in the evening to await biopsy results which won't come back until probably noon on Wednesday.

To say we are a bit "finished" with all these tests is an understatement. Sarah's been poked and prodded in the past few weeks more than she has been in a long time and the continual up and down, bad news, good news has worn us all down.

Still, we're optimistic that the biopsy will come back negative. They plan to being tacrolimus again Tuesday night and if necessary, prednisone on Wednesday, IF there is a acute rejection. Again, we're just praying for NO four day hospital stay. We'd like to make it through the holidays without one if possible.

We would be nowhere without your support and you are all so appreciated.

A Very Brief Update

Sarah's EBV level has decreased to 95 according to her last lab results. Patty will take her again Sunday so we can know by Tuesday night if they have truly reached the "negative" level. In the meantime, the docs had originally prescribed her valcyte to help ward off the EBV but since that is now so low they have taken her off that med. She is still not taking tacrolimus so basically there is nothing external to fight the viral stuff or rejection.

I have to admit I'm a bit hesitant to not have Sarah on SOMETHING but according to Dr. Reyes, this is the best avenue to take until they can verify the EBV has been eliminated. They would then place her back on tac next week.

Your prayers for Sarah's health to not be compromised further during this short stretch would be appreciated. She seems to be feeling better but continues to cough intermittently.

All Clear!

We finally heard back regarding Sarah's biopsy results, thanks to Patty's continual calls and Marsha badgering the lab.

She's all clear! It's nothing but sometime of viral infection or reaction to the meds they put her on for the EBV. We're all relieved. Sarah has clinic tomorrow and they will likely put her back on tacrolimus, her anti-rejection med.

Thanks everyone for your continued prayers and care.

Thankfulness...and awaiting more biopsy results

I started to write a blog entry about all the things I was thankful for yesterday but the document was accidentally deleted. Instead of attempting to recapture some of the words, I'll keep it short and sweet.

I'm thankful for my wife, Patty, an incredible woman who makes this life of adventure worthwhile. Without her, it would be a dull and lonely amusement ride. You're the glue that keeps us all partially sane amidst continual insanity and chaos.

I'm thankful for the four blessings God has given us: Arianna, Caleb, Katarina and Sarah. They have been resilient time and time again in the face of adversity. I cherish each one of them for the gifts God has imparted to them.

I'm thankful for both sets of parents, who have been available without question in time of need. It's a blessing for our kids to know their grandparents and share precious memories.

I'm thankful for the Body of Christ whose face has shown the brilliance of our Savior time and again in the constant turmoil of our lives the past two years. We are so grateful it's difficult to put into words.

I'm thankful for God unlocking the talent of writing within me. It has released so much from my life and has been a balm as I walk through Sarah's health issues.

I'm thankful for the writers I've met the past two years who have become dear friends; and for the friends, both near and far, who have shared their hearts, concerns and hurts through the years.

I'm thankful for our other family: those who have children with liver issues. These liver families have become part of our own as we share in rejoicing amid triumphs and crying in times of trials. You are precious to us. Some of you have become very close to our family and we dearly love you. (I think you know who you are!)

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Sarah update:
Tuesday was clinic day and fortunately the snow had subsided enough to allow Patty to safely travel to and from Seattle Children's. Because the rash on her body and face had gotten so out of control, they took a chest x-ray. Then Marsha, our transplant coordinator, at the urging of the main doctor ordered a biopsy of the skin on her back. Sarah was able to get right in for that, partially due to the weather, I'm sure. So again we wait...probably until the Monday. Why a skin biopsy you ask? Apparently some of these rashes can simply attributed to the viruses she is attempting to fight off and will eventually go away as the EBV dissipates. However, there is also something called graft vs host. While this primarily occurs in bone marrow transplant recipients it has a 15% chance of occurring in a solid organ transplant recipient.

Graft vs host as we understand it is where the antibodies from the new liver attack the host body instead of the immune system attacking the liver. It's wild stuff but the doc was concerned enough to order the biopsy. As always your prayers are appreciated.

Happy Thanksgiving, all!

SNOW DAY!

A welcome dose of snow yesterday for the Kraft family. Received just around four inches or so and enjoyed lots of play time outside even with 27 degree temps. Woke up this morning to 14 degrees. Yowser! This was Sarah's first experience playing in the snow and she loved it. It was Katarina's first time to enjoy it as she was 2 years old when we had our big snowstorms in 2008. Even with my bad back I had fun although I paid for it overnight.

Friday Follow-up on Sarah

Ok, so far the liver biopsy still has not come back. They normally take 24 hours so it's a bit past that but based on Dr. Horslen's comments, I wouldn't anticipate the news being bad.

Patty said that Sarah's EBV is down to 1600 (as opposed to the 26,000 last week) and that they are not concerned about rejection, likely because the immune system is so busy warding off the EBV. Her liver labs have also improved so that is encouraging. Finally, Dr. Horslen commented that Sarah is probably just battling a viral infection which would explain the inflated EBV numbers.

Both Sarah and Patty are pretty worn down as they were awakened quite a bit during the night. Sarah has already nodded off three times today which is very unusual for her. Patty told me the little girl hasn't even wanted to walk around the floor which is odd. To me, that means she finally got the chance to rest (instead of chase or be chased by her siblings) and her body is trying hard to recover.

If anything changes, I will let you know. For now, we still expect them to return home tomorrow (best case).

A Writing Break: Mission #1 Accomplished - The First Draft

I did it. I really did it. I wrote a book, 80,000 words of it. I still can't believe I'm saying that. I wrote a book. Wow. It's not that I am so amazing - "Wow, that Kirk Kraft guy is pretty awesome - it's that after struggling for many years to find a rhythm in my writing life, it happened.

Since the beginning of October I've written over 44,000 words. Writing has finally become a daily habit like shaving or eating. I'm thankful God has allowed me to be more productive than at any point in my life. It's not just the novel but my other writing as well.

It's true I haven't sold ANYTHING yet, and I might never do so. I'm not looking for fortune or fame. My goal is three-fold: to glorify God by using the talents He has given me; bringing a little joy to people's lives; and, writing the stories I need to tell.

If only a select group of friends, family and other writers read my work, I would be good with that. Do I desire to make at least a little money in this venture? Sure. I'd be lying if I told you otherwise but I'm also realistic about the publishing industry.

While I'm excited to finish the book (did I already mention I'm stoked?), I realize most first draft are, well, crap! As many good writers will tell you, the first draft is the easy part. Then you need to let your 'baby' sit awhile. THEN, comes the difficult part: tearing that puppy apart. Looking on the story with a critical eye and change the things that don't work. Some writers completely rewrite their novel, the entire thing.

I wanted to take a break in the midst of our craziness with Sarah to tell you that even in the darkest times, there are splinters of light shining through. My writing has been one of those things for me.

LIKE SAND THROUGH THE HOURGLASS…

Some of you may not get that reference to the “Days of Our Lives” soap opera. I hate to break out such a reference but geez, the days of OUR lives can be far more riveting. I want to begin by saying that our life is not all gloom and doom. We share a lot of joy and laughter in our home. More often than not, we’re living as close to a normal life as possible when you have a transplant child.


Sarah visited Children’s for follow-up labs today and they weren’t what we wanted to hear but were half-expected:

Scoop #1 – There are outward signs the EBV infection is not going away. Sarah has had this ever-increasing rash on her face and Patty said her poor little lips are so cracked they’re bleeding each morning when she wakes up. Rash is one of the signs that EBV is not leaving the body quietly. Sarah also hasn’t been able to shake a cough and has been waking up multiple times during the night crying out. Another sign EBV is causing trouble.

Scoop #2 – Sarah’s liver labs have jumped slightly since the docs lowered her tac dosage to .5mg daily. Still, there is always the concern of rejection and with the EBV present, things are that much worse.

On tap: Patty and Sarah trek back down to Children’s early Thursday for 7am labs, followed by an ultrasound at 730 and liver biopsy at 915. Maybe we can call this the Carnival of Tests. Sounds so much better than “battery” of tests, don’t you think? The biopsy will also be tested for lymphoma in the liver. There’s that OTHER ‘L’ word.

Once the carnival is finished, they will admit Sarah for a 2 day viral treatment to combat the EBV. Depending on what else comes back on the labs, as in acute rejection, the stay could be as long as 4 days – our customary stay time at the luxurious Seattle Children’s resort.

This comes at a bad time for me (is there ever a GOOD time?), as we are short-staffed at work and I need to be there 10 hours Thursday and 12 hours (at least) Friday. If you could pray for my mental faculties, the ability to focus amidst our chaos, I would appreciate it.

It goes without saying that Sarah and Patty need your prayers while at Children’s. As frustrating as this rollercoaster ride can be, if Sarah comes out of this with the EBV gone and no liver damage, I will be exceedingly thrilled.

A happy reminder: Earlier this afternoon it hit me that today was the 2 year anniversary of Sarah’s Kasai surgery when she was two months old. My how time flies!

The CT Scan was clean!

Most of you have heard by now either via email or always reliable Facebook that Sarah's CT scan returned clean for lymphoma. (Her daddy exhales a major breath of relief). The EBV is still an issue but the reduced tac dosage should remedy that pretty quickly. Sarah's still pretty congested and coughing intermittently, even though they tested her oxygen level at 99% on Thursday. If it continues, we may need to visit an ENT to check for swollen lymphnodes in her head.

Thanks for all the prayer and support. You all are amazing.

Skyrocketing EBV count = CT scan for Lymphoma

Just spoke with Patty and Sarah's EBV has skyrocketed to 26,000. Marsha told Patty to reduce tac level to .5mg and to plan on a long day at Children's tomorrow. Sarah is scheduled for CT scan at 1045am, so no food or drink after 7am. I always feel so badly for her when she has to go so long without food and liquid. The procedure won't end until 3pm and she may have to be intubated at some point.

Her breathing really hasn't improved and she has been coughing a lot lately so I can't say that I'm shocked by the EBV number. Still, it's sobering to have your kid going in to check them for cancer.

Please pray for the Sarah and Patty tonight and all day tomorrow. These are tough times on Patty when she is at Children's for these types of tests. If anyone local thinks they can go hang out with her, that would be fabulous.

Elevated EBV

We received not so good news yesterday. Marsha from Children's called and there had been some snafu in acquiring EBV labs from our pediatrician when Sarah visited about a week and a half ago. Her EBV level is elevated to 4900 which is by far her highest level ever. We had to have labs done this week anyway so Patty took Sarah last night.

Sarah has been sick for awhile and Patty gets really concerned, as we all do, when that is the case. Sarah's tacrolimus was reduced .5mg to 1mg twice a day to allow her immune system to fight off her cold. The good news is that her liver labs still look good. We won't know if the EBV has increased or decreased until at least Thursday. It's a good thing we've been keeping Sarah home from church and the public in general.

Marsha also told Patty the concern is that even without her tonsils and adenoids, which they took out a few months post-transplant, Sarah is still vulnerable to lymphoma. That is one of the reasons they watch the non-liver numbers so closely.

We know so many families out there awaiting the gift of a new liver (Nikki and Darby, to just name two) or who are battling a variety of issues (Olivia). Our prayer is that we all would seek refuge in the presence of the Lord and continue to step out each to live our lives to the fullest. Let's not hold back any love, any care, any thing we could do to brighten someone else's day.

Helpful, Not Hurtful

Recently, a liver friend of mine was relating an experience on Facebook. She had been really hurt by a careless comment someone had made. If you read the comment as a normal person, you may have thought nothing of it. But if you read it, as this friend and I did, as parents of children with liver disease or transplants it was impossible to interpret it as anything but callous.

This got me thinking about how people who have NOT lived with a liver child or someone else with a compromised immune system can relate to those of us who DO have such children and experiences.

It's true that each one us has different life experiences. Many of us can't imagine circumstances like a child's serious health condition, or a terminally ill loved one. We can ignore those things as long as they're not happening to us. We can even keep them at a distance if a friend experiences them. But should we?

Honestly, Patty and I knew nothing about biliary atresia or that liver disease was so prevalent in infants and toddlers. Nada. Zilch. We're hardly "experts" now, but we've seen through living it what strain, fear, anxiety and uncertainty liver families face each and every day. I'm talking specifically about those still "waiting for the call". We have been keeping tabs on little Nikki Taylor down in California who has been waiting for months for a liver donor. She has reached the point of critical need. She needs a liver now but several potential living donors have backed out for certain reasons. (I'll address this in a future post.)

Nikki and her family, and those like her, are walking a tightrope of hopefulness and caution. The friend I mentioned in the opening has a child waiting for a liver transplant. They are anxiously awaiting the call and are taking precautions to prevent unnecessary infection or exposure to sickness that would prevent surgery should the call come.

Isn't that what a parent should be doing? Watching over their child, their ill child, and keeping danger at bay? It's mind boggling to me that anyone, but especially people who say they are "friends" would make hurtful comments. Really? Have they not considered how this can affect the fragility of a parent's emotions?

Patty and I are blessed with the most incredible support system imaginable. Not once did we receive an unkind word, or an unthinking comment from anyone. So, it's that much harder for me to imagine what it's like for my friend. But I know what she is feeling because I have been there. Let's be helpful not hurtful to those around us, whether they have liver kids or not, but especially if they do.

Words carry an amazing amount of power. Let's be careful how we use them.

Walking along the Write Path

Some of you may be interested in following the progress of the first draft of my novel. I'm closing in on my 80,000 words and will call it finished at that time. Of course, that doesn't mean I won't cut many words, add many more, or do a painful rewrite at some point.

I've written over 28,000 words since the beginning of October which has somewhat shocked and certainly delighted me. Writing has truly become a habit for me, which was the goal all along. The trick is to maintain this pace and progress; to become a better writer; to ultimately create something people want to read and which speaks to their life or offers food for thought. Something that takes them away from the real world for a moment but which also connects them deeper with that same world.

I'm fully aware that many first novels die a brutal death and end up residing in a drawer, a trunk or a closet somewhere. A good experience, no doubt, but something that simply is not publishable. At the same time, I'm confident that some day a book with my name on it will reside on the shelf of a bookstore. It's not because I desire to be famous or need any validation as a writer. I feel God has called me to write and I will do it to the best of my ability. If all that ever sees the light of day is this blog or the stories I share with family and friends, it will have been worth it.

Possible Cause of Biliary Atresia Discovered?

I found this interesting article relating to the possible cause of BA. It's a bit different from another suspected cause that relates to genes. It's good to see there is some thorough research going on in this area. We don't know how this would translate into discovering a cure, of course.

http://www.eurekalert.org/pub_releases/2010-10/uocd-biu102610.php

A Good Holding Pattern

We're into the second full week of no labs or clinic visits for Sarah. Based on her last clinic visit on the 14th, unless something comes up, she will be on the routine of one lab visit per month and clinic visits every THREE months. Suffice it to say, this a huge step for all of us in the right direction. Less is more when it comes to visiting the fine folks at Children's.

One caveat: if Sarah continues to exhibit any flu-like symptoms or other signs of illness, we would have to take her in for labs which could result in a clinic visit and/or biopsy. We are really praying she can go the entire three months with no problems. I don't know what we'll do with ourselves if that happens.

Your continued prayers and support are appreciated. It will be tough to avoid illness as flu season begins but we're hopeful.

Priorities

Sorry for the long absence. I miss you, my blog peeps! I've been focusing on, well, priorities. I'm working to get my life better aligned with my priorities, or things that SHOULD be priorities. This includes no brainers like quality time with my wife and kids, as a family, and one-on-one time. It includes placing God above all things since He is the one who makes everything else possible and who has granted me the blessing to have such beautiful people in my life (including all of you.)

One of my priorities, that I have long neglected, because it wasn't practical to include in my life is writing. I first started writing in 3rd grade and wrote pretty regularly - and almost exclusively for myself! - for 20+ years. When I married Patty and started a family, I gave up my writing and packed it away in a box. Yes, even in a nice little box in my brain. I just thought that wasn't going to be a part of my life.

When I started school in September 2006 and began writing for my classes, a little light went off in my brain. it wasn't until June 2008 that I started to recognize it was God telling me I should pick up my writing again. So, I figured, what the heck? If it's really meant to be, I'll be motivated and see progress in the quality of writing. It's not a matter of being published, although, I won't lie, that would be outstanding. It's a matter of being true to my dream and following what the Lord told me. As a kid I imagined myself writing for a living. Somewhere along the line - it's called "life" - I lost sight of that dream.

So in the last two years, I joined a number of writing groups both locally and nationally; I've attended several writing conferences; braved the waters of having my work critiqued; worked on making writing a habit, just like brushing my teeth; and sharing my dream with others. I'm not the most naturally extroverted person but I'm learning it's necessary in the world of writing. If for nothing else, to make friends with other writers for encouragement.

So why am I talking about writing? Because it's one of the priorities in my life I've neglected. But I've made a change and am working to have my life truly reflect my values. I want to spend more time with my kids, instructing them and being there for them. One of the ways I do that is to sit down at our kitchen table with them while they're doing homework. This way I'm readily available to help and encourage them. Sure, I can get some of my own writing done, but I don't make that a priority of the moment. I want them to know my desire is to be intimately involved in their lives. I'm looking for ways my son, Caleb, and I can have more substantial guy time. I want to establish an absolutely mandatory weekly date night with my wife. These are all win-win situations. They'll make me a better dad and husband and my kids and wife will know I truly treasure them.

What are some of the priorities you have left hidden or set aside during stressful times? Or even in your busy daily life?

Sarah is home!

No hospital stay this time, gang, praise God. Sarah's liver labs are still a bit elevated but apparently not concerning enough to admit her. Naturally, Patty will have to take her yet again for labs early next week but this is a major blessing not to have Sarah admitted.

Biopsy for Sarah

We received early this morning that Sarah had "flunked" her latest labs. Ok, so I am seeking some levity here! Anyway, her liver numbers have escalated again so a biopsy today is necessary. She should have headed in a few minutes ago, 1pm PST. We won't know the results until tomorrow afternoon but Patty isn't very optimistic that we will avoid a hospital stay. The numbers were high enough she seems to think an acute rejection is likely. We will have to wait and see. I'm hopeful that is not the case as four days in Children's would be a pain in a number of ways.

Thanks in advance for your prayers.

Memories: The Big Bleed

I'm busy completing an essay for a writing contest and I'm integrating an essay I had submitted for American Baby (which was rejected) with additional segments. I'm busy writing about the event that significantly changes our lives, outside of even the initial diagnosis of biliary atresia and subsequent Kasai surgery. It's the day we discovered what 'varices' really were. It was the day of Sarah's big bleed.

I consider myself very fortunate - though I find myself feeling guilty at times for missing it - for having missed this traumatic episode. I was blissfully at work and a friend was visiting Patty (thank God for Miranda!) the morning of March 3, 2009. I vividly remember receiving a phone message from my dad who had been crying to call him ASAP. Do you ever have those moments when your body tingles all over, and not about happy news? That's how I remember feeling when listening to his message.

The news he had was that Sarah and Patty had just been helo-vac'd from the school not far from our house to Seattle Children's Hospital. The reason was that Sarah had vomited nearly all of the blood in her body on her crib and on Patty. A nurse in the hospital later told Patty a child that small (Sarah was not quite 6 months old) only has enough blood in their body to fill the equivalent of a soda can. Much of it came out in clots and I admire Patty so much for remaining relatively calm in the face of such distress. God most certainly intervened. Our friend, Miranda, called 9-1-1 while trying to shield our then-2-year-old Katarina from seeing Patty come down the stairs with blood all over her. Again, God was amazing. Katarina didn't even try to look, she simply buried her face in Miranda's legs. She never saw a thing.

My dad, who was going to be stopping by a little later to pick up Katarina, felt a nudge (no doubt, again, God!) to come by the house early. He knocked on the door just as Patty was coming down the stairs. He immediately loaded Katarina in his car and shielded her. Meanwhile, the EMT's had arrived and after looking at Sarah, decided they could not afford to take her via ambulance. They would have to take her by helicopter.

I remember my dad describing the scene at the nearby school. When the helicopter arrived, people poured out of the school and nearby homes. It must have been quite a sight. Patty was so focused during this time she doesn't even remember the helicopter ride. She was bent on keeping Sarah conscious and nothing else mattered. There was some discussion of not allowing Patty ride with Sarah, as that was apparently not standard practice. However, the onboard EMT simply told Patty to climb on. If they hadn't, oh man, I hate to think what Patty would have done. You other parents can certainly relate. It was a blessing we didn't have to worry about that.

The doctors and nurses at Seattle Children's have been etched in our hearts (and the helo transport team as well) since that day, as if they weren't already. By the time I reached the hospital later that afternoon, Sarah was quite stable. We didn't find out until the following day that she did have esophagel varices. The spread of those eventually into her stomach, resulted in a very short wait for a new liver. As I've related some on this blog, I sometimes wonder why Sarah received a liver so quickly and others have to wait so long, or don't receive one in time. It's not right for me to feel guilt for something I have no control over. I'm so grateful we have had Sarah with us for these two years.

I won't ever forget that day and that's even moreso for Patty. I wish I could erase all the anguish and fear she felt that day but it's one of those experiences, though we would never in a million years choose to live through, that make us stronger and able to stand alongside others who are now walking that fearful road.

Monday Prayer Requests

First up, please keep Olivia King in your prayers. She had some major issues with her stent yesterday and had to be rushed to the ER. It appears she is out of the woods but the docs will need to repair her stent and remove part of it that was sucked into her intestines. I'm grateful for this family and this beautiful girl. Thankfully, they were able to attend church yesterday before heading to the hospital. Let's ask God to allow this family some quality time at home and with their friends. They have been on a rough ride and it is encouraging for Olivia to be home.

Second, Patty takes Sarah to Children's tonight for her labs to insure liver numbers haven't increased. We are praying things have normalized and that no biopsy will be necessary once we receive the lab results on Tuesday.

Thanks for your continued faithfulness.

Life After Transplant

In one week, we celebrate Sarah's 17 month transplant anniversary. It seems so long ago but at the same time it feels like it just happened a month or two ago. Sarah continues to blossom and change. She talks more - with real words - each and every day. She giggles, chases her siblings around and plays with her dolls. Sarah is your normal two year old. Except she is not. She has someone else's liver that has now become her own. Very occasionally we consider Sarah needing another liver down the road. Those thoughts have to remain far behind us. We have four children to raise and the challenge of parenting is enough without wondering day-to-day if Sarah will have the chance for a "normal" and full life. Each day is a gift: that means each day with my wife; with my kids; our parents; and friends. None of us is guaranteed tomorrow so why dwell on the possible? Live in what is possible NOW. And now, there are smiles, laughter, tickling, helping with homework, listening to my older kids read, long walks, great talks with my wife and so many other things.

So has life changed for us? Sure. Before we knew Sarah had biliary atresia, she was just our fourth child. She is still our fourth child, but one given a new lease on life (thank God) with the precious gift of a new liver. But our lives are much the same as before. We have a great family and our time together is dear to all of us.

I have a couple of questions today, for those of you with post-transplant kids:
How have your lives and theirs changed since transplant?
Do you still think daily about where they were pre-transplant?
How long did your child have to wait for liver or other organ?
I would love to hear your thoughts and about anything post-transplant.

Parenting a Liver Child, part 2

I wanted to follow up on yesterday's blog post. I had originally intended to drive a different road then the one I traveled and wanted to drive down that road today.

How many of us who parent these wonderful liver kids deal with the dilemma of not coddling the sick child? By this I mean, do we unconciously treat our liver kids different from our healthy kids? I know this is a difficult question to answer. Parenting a liver child is not always black and white or cut-and-dried. There are those of us whose kids have a) had the Kasai surgery but are doing well and there is no need for a transplant at this time; b) those who urgently needed and received new livers; and c) those of us who are anticipating (anxiously or otherwise) a transplant for a child dealing with ascites or varices, etc.

It's hard NOT to give an extra dose to the kids in group c. When you daily deal with the thought a liver may not come in time, how else are you supposed to act? But it's not here that I want to dwell. I want to deal more directly with showing an abundance of affection, love and attention to the liver child in group a or b than we may show to our other children.

Has this ever been an issue for those of you with liver kids? I would love to have a discussion about this and hear your thoughts. I don't pretend to have all the answers and I'm still walking through so many different things even though Sarah is doing very well 17 months post-transplant.

The Liver Kids #4: Olivia King

Here is another installment in the Meet the Liver Kids series. Olivia is a chipper 14-year-old who just received her second liver transplant. She is battling issues with her stent and also has cystic fibrosis. Olivia's mom, Barbara, has been gracious enough to allow me to utilize Olivia's own words from the Friends of Olivia Facebook page. If you don't already follow her progress, please do so. The family really needs your prayers. This has been a continual up and down struggle and they just returned home after a very lengthy hospital stay following transplant.

Now, without further adieu, please meet Olivia King, in her own words:

"My transplant was because I had a genetic disease called CF. And boy was that horrible to learn. It scared my parents but they seemed to be so strong. For years I have been stuck in the hospital because the Liver became a flop and has not worked for 10 years. I had what they call a thrombosis at transplant and caused me to have those awful, horrible bile duct stents. The CF complicated the liver stuff and the liver stuff complicated the CF. So around and around we go.

Not too many people know about CF or even about transplants. I have learned so much over the years that I try to not talk about it. My life is not about my disease, it is about me. In fact, I hate it sometimes when my parents talk about it because people see my sickness and don't see me. But, I do understand that people want to know because like my friend Tyler who has mitochondrial disease, when you first see me you think I look great. You think I am fine. Even my Doctors say that and it just makes me mad because I know how I feel on the inside."

To read further about Olivia go to: Friends of Olivia Info page

Parenting a Liver Child

For those of us who have the privilege of parenting children with liver diseases, life has taken a decidedly different turn than we could have imagined. I doubt any of us woke up one day and said, "You know what, it would be outstanding if we discovered our child has a life-threatening liver disease." This kind of challenge and excitement we could all do without.

As we have learned, we have no input into caring for a child with biliary atresia or the myriad of other liver diseases. But we do have a choice with how we deal with it and the example we set for our families and friends, and particularly for our other children.

I think I can speak fairly confidently that all liver families have had their days where they thought they were walking this frightening path alone; where we were ready to throw in the towel and surrender; where we kept thinking, "why our child?"; and where we really thought we were at the end of our rope mentally, emotionally and physically. We may have been concerned  with what this looks like to our other children or for those close to us. I know I have. It's not so much the image I portray to them but how they see me dealing with the stress, the separation, and if they think they are loved less because so much time is spent with another child.

This is particular difficult for very small children. Our own Katarina was not yet 3 when Sarah was diagnosed with biliary atresia. We spent almost two weeks in the hospital completely away from her and our two older children. The subsequent long hospital stays when my wife was away from home for many days at a time took a visible toll we are all still recovering from. Katarina felt it perhaps more than Caleb or Arianna, though they certainly suffered as well.

My point for this post is three-fold. First of all, never fall for the lie you are alone. We all share life together and we need to let a network of concerned people, whether friends, other families or complete strangers. The "strangers" - other liver families - we have met have blessed us as I have documented before. So, first, get a lifeline. Second, try as best you can to break away from the hospital to spend quality time with your other kids. We failed in this regard before we finally found a routine that worked. Yes, we were emotionally and physically worn, but it is absolutely essential your other children realize how much you love them as well as their sick sibling. Do what you can to explain the illness and why you have to be with their brother or sister. Just love on them the best you can.

Lastly, know there are others right where you are and who understand what you are going through. We may be dealing with different liver diseases and degrees of urgency, but we have all lived through learning there was an illness that was threatening our child's well-being. Live your life, seek help, love one another and get time away. It's imperative each parent gets a break from the daily grind of hospital life. There is too much at stake not to do so.

HAPPY 2ND BIRTHDAY, SARAH ANN!

It's hard to believe but today is Sarah's birthday. Where does the time go? It seems like not so long ago she was battling bleeds and in dire need of a liver transplant. Today, you would never know she even HAD a transplant. Her health has been phenomenal lately and we are very grateful. She continues to grow like a weed, chase her siblings around and flash her trademark smile & charm.

We are blessed with four of the greatest kids around. Sarah's siblings, Arianna, Caleb and Katarina, love her and each other greatly. God has given me an incredible family and I'm thankful to be their daddy.

So Far, So Good

Sarah has been off the prednisone for over a week and is doing very well. She has been more tired than usual the past few days but we found out she is teething some  molars so that explains some of it. She also got a nice, semi-deep cut on one of her big toes but there doesn't seem to be an infection, praise God.

Next clinic visit is on the 14th. Hopefully all numbers will remain normal so Patty and I can actually have some time away for our anniversary this year.

Thanks, as always, for your continued prayers. You are a faithful bunch!

Dropping a Couple of Meds

Sarah is finally being weaned off her prednisone and ursidiol so we are asking for prayers that all will remain stable with her liver and immune system. She has been on the prednisone for some time due to some borderline acute rejections in the past. We're hoping she is able to remain off the steroid for awhile and continues to thrive as she has been doing. Thanks for standing with us. Her next clinic visit is September 14.

The Liver Kids #3: Abby...has flown away

I learned this morning that one of our liver buddies, Abby, passed away during the night in the arms of her mother. They had urgently been trying to find a new liver for the little sweetheart but one didn't come soon enough. She would have turned 1 next month. Abby was a sweet little girl, so beautiful - and like so many (if not all) of the liver kids, had a wonderful smile and personality. She will be missed.

Please keep Abby's parents and family in your prayers. My previous post seems even more appropriate now. Reach out to those around you and encourage the elderly, the ill, families with seriously ill children and love on your own kids and spouse. We need to be treating each day as a gift and like it's our last here on earth. Don't waste the time you have.

Lord, please comfort those families who are suffering through trials such as Abby's family is now. Whether they be in the hospital, at home, or grieving, may the tears that fall find their way to you. Please embrace these precious people and guide them through these circumstances.

The Love of God in our Liver Family

We never asked to be part of this community we now affectionately refer to as "Liver Buddies" but we have clearly seen God's hand within this group of families whose children are affected with various liver diseases. It's difficult to say just how much we have been blessed by the fellowship of sharing in other's lives. There have been joyous times as we watch some of our little buddies receive their gifts of new life. There have been the heartbreaking times when we have sat in stunned silence feeling a deep pain in our hearts over the loss of a dear one to these terrible diseases.

Through all of this we have witnessed parents loving their children with abandon; watched as family members and friends do all that is humanly possible to support these families and prolong the life of a seriously ill child; and been encouraged that even in the face of devastating loss, the faith and strength that parents and extended family carry with them through such unbearable trials.

These acts and responses are not some random show of love, kindness and support. These are the faces of God, walking with each one of us as we walk a hill none of us would choose to walk. It is only through His grace that any of us can survive day to day as we watch a child suffer. We have rejoiced when kids have turned the corner, miraculously; when liver labs inexplicably go from disturbingly high to normal; when things look dismal, after months of waiting for a liver, in the darkest hour one arrives and changes a little life.

I know there are liver families out there that may not believe in God and that's all right. I'm not writing to convert anyone. I simply write about what I have witnessed. And I have witnessed God's tender touch on my shoulder. I have witnessed God's compassion in the love of friends who are almost always present during a hospital stay that lasted 52 out of 61 straight days. I have witnessed the comfort only He can provide amidst loss and questions. I have seen the miracle of children too young to know any better than to display a joyful spirit no matter what the circumstances may look like to other people. I have cried for children I never met who have flown to Heaven as if they were my own.

Just as many of us are bound together by our bond of suffering in caring for seriously ill children, so we are bound by love and compassion for each other, and bound together within the arms of Christ.

Never forget the love, dear friends. No matter what you are going through, the opportunity is there to bless someone else, to offer a word of encouragement, a meal or a visit. God help us to walk out the life He has ordained for us. Let the world know us by our love...

The Liver Kids #2: Austin

Everyone please say hi to Austin Wright, one of our biliary atresia friends. This handsome little guy has been through a lot. His dad is in the military and the family is stationed in southern California. They have had a couple scares with Austin and bleeding issues. He, like so many of our wonderful liver kids, needs a liver sooner than later. Please keep he, his sister, Makayla, and his parents in your prayers.

Is it me or are our liver kids some of the happiest kids in the world? What an amazing testimony to God's goodness and grace in our lives. Sarah's personality never wavered during her many stays. Sure, she had days she was very tired or had been poked enough for about ten people. Through it all she would flash that precious smile and love on people. Some times I think she helped the nurses and docs more than they helped her.

Thank God for these precious children.

A Little Behind

As you can tell, I am little behind on my promised intro to our little liver friends but promise to get back to that shortly, as well as some brief posts regarding the different types of liver diseases that children acquire. I'm looking forward to the reading just to make myself more knowledgeable, as we have met families with kids suffering from alagille syndrome, Alpha-1 and other things.

Also, I made the difficult decision to forgo college at this time. It just isn't good timing. I still have some things to work through regarding Sarah's illness. A huge thing is getting my priorities back in order as those have been blurred for the past two years.

Thanks for hanging with me. I'm hopeful August will end with a bunch of posts...and then school begins again. Where DID the summer go?

GOOD NEWS for Chloe

Just a quick update for those of you not on Facebook:

it appears that Chloe is doing extraordinarily well. So well, in fact, that the transplant team has told Gherri that the liver may be fine without the missing artery. As you know, the liver is the most regenerative organ in the body and we are grateful God is blessing this little one. Hopefully there will be NO NEED for another transplant ever. Pretty pumped about this and so happy for Gherri, Lenny and their family.

The Liver Kids: #1 Chloe...and she needs ANOTHER liver

Chloe is the first of this month's Liver Kids I'll be focusing on. She's a 1 year old little cutie pie from the northeast. She likes to keep her mommy up late and has a great personality. Chloe had been waiting some time for a new liver. This family has been very patient as they lived through two "false starts" - getting the call but finding the liver was not a match. Then, last week they finally received the call of a lifetime. Everything seemed great with the transplant until about 24 hours ago when Chloe had a fever over 101. The docs discovered that there was an artery missing in the new liver, which apparently happens from time to time. This essentially means the liver is failing and 2nd transplant will need to occur immediately.

We love this sweet little girl and her family and are praying that a new donor becomes available immediately. Please join us in this urgent request and remember Chloe and her family in your daily prayers. Even following transplant, these liver kids need our prayers and support. 

Baby Jesse is soaring with Angels

I just learned that one of our precious BA kids, Jesse Alexander, died last night. He was a precious little boy only 11 months old. It appears he contracted a blood infection yesterday that quickly turned to anemia. The doctors did all they could do but could not save the little warrior.

You can read more here - http://www.babyjesse.org/jesse-alexander-left-us/

Please lift the family - mom, Chantal and father, James, in your prayers as often as possible. I'm having a difficult time with this. I so HATE biliary atresia I am finding the words hard to come by. I want to see this disease eradicated and wholeness brought to all the families who have lost precious children.

Kirk

August is "Meet Our Little Liver Friends" Month

Ok, so that's not an official celebration but it will be on the blog! My goal is to feature two or three kids each week for the entire month of August. I'm thinking that will not be very difficult considering all the families we have met online and in person at Seattle Children's.

Some of the delightful children you will be meeting include:

Olivia - 14 year old battling through her second liver transplant who also has cystic fibrosis.

Austin - a little guy from Southern California who is hanging in there while awaiting a transplant.

Jax - on the other side of a transplant and doing well.

Cora - a dear baby girl we met while at Seattle Children's. Her family has to travel from Montana for their clinic visits and any worrisome issues.

And there is Braeden, our little buddy, who finally returned home following his transplant and some up & down days.

If you don't already have the blog bookmarked or are set up to receive feeds, you will want to do so for August. These kids will charm your socks off!

Time to head back to College...Psych!

Yes, that's right, friends. After a two-year self-imposed (and wise, considering the circumstances) hiatus from school, I am headed back. I was just accepted to Northwest University LEAP program in Kirkland. LEAP is essentially their bachelor's program for working adults.

It may surprise some of you to learn the degree I will be pursuing: Psychology. I will admit that I haven't really considered that degree until about a month ago. Perhaps God gave me this time off from school to show me what direction I should go. The short version is that through times of contemplation, prayer and reading, I kept coming back to a degree that would serve others and that would be multi-faceted in terms of career options. Psychology is one of those degrees. I feel compelled to pursue something that will benefit others. As I read and listen to other liver families and their struggles & strains, I can't think of a more tangible degree. Additionally, this is a HUGE stretch for me. I will be completely out of my comfort zone with this program which is right where God wants me. I could have easily fallen back on an online political science or business degree. For once in my life, I am sensing clear direction from God (not that He has never provided direction before; its just very clear) and I need to follow it.

In the coming months, I will share my experiences via the blog as it becomes more of a journal of my life. There will still be plenty about Sarah's continuing adventures but also about being a parent, writing and those other beautiful liver kids!

Stay tuned...as if life wasn't interesting enough...strap yourselves in, folks. I'm ready for a wild ride. How about you?

"Yes, I'm Still here", or "Some Thoughts Regarding the Blog"

I was reminded today that it has been almost a full month since I updated the blog. For us, the saying "no news is good news" applies. Sarah was able to fight off her EBV and all numbers have returned to normal. She has another clinic visit this Thursday but there's no reason (knock on wood) to believe anything distressing will come back from labs.

As I've been swallowed up by preparing for a writer's workshop in August and finally reaching a decision about returning to college and which degree to pursue, I have also been considering where to go with this blog. Patty and I have been closely monitoring many liver families via Facebook for a few months now. It started out with just our local friends we met at Seattle Children's, a few through the Liver Families website and via our liver family "networkers" Cari and Beth.

I'd like to take some time for a month to introduce some of these wonderful children and their families to you. We have been blessed to be part of their lives, even in some small way. Just knowing what other families are going through has energized to pray more and to encourage others that much more. It has also inspired us to continue to get the word out regarding liver diseases. While biliary atresia is the one that strikes a chord closest to home, there are so many others that hit babies and toddlers. I hope to relate some information about each in the coming days as we draw closer to the Seattle Liver Walk for Life on September 26.

I hope you will frequent the blog more often between now and then so you can meet some of the beautiful children: Olivia, Jax, Orlando, Braeden and others. Many you may already know and others you may not. If you are on Facebook, I encourage you to seek out these people. Prayers and encouragement can never be underestimated.

The Opposite of Sunny News

You know, I'm not normally a pessimist. Yesterday, in fact, things were very rosy as we learned Sarah wouldn't have to visit Seattle Children's for a month. Alas, I should have known something was up. Our ride has rarely been that smooth since her transplant in late April 2009.

So...Patty calls awhile ago and informs me that Sarah's EBV is up over 8000, her highest level ever. There is no immediate need to panic. The transplant team advised a reduction in her tacrolimus - the primary anti-rejection med - and for us to keep an eye on flu-like symptoms. You know, too much sleeping, different kind of stool, runny nose, etc.

If she doesn't show any signs, then the reduced tac dosage should be sufficient to hold out for two weeks - when we would have to get labs again. If she does show signs, then obviously we would...oh, I just can't say it...go into Children's for a brief stay. You can be praying that does NOT happen, and that all goes well for these two weeks. You can also pray for my sanity...and that the darned pessimistic thoughts don't pop up again.

Some Sunny News for June!

Hi gang,

I just learned that Sarah's labs were so great that she won't need any labs or any clinic visits for an ENTIRE MONTH. I know this may not seem like a huge deal to some people but bear in mind for the vast majority of Sarah's post-transplant life, we have had to visit Children's weekly for blood work and twice a month for clinics. Dr. Horslin wants to keep her on the prednisone for two more weeks and then slowly wean her off of it the following two weeks leading up to the clinic visit next month.

Sarah is also becoming a little chunk. She weighs about 30 pounds but motors around so much that even with the prednisone increasing her appetite she didn't put on any weight between visits.

Praise God for His faithfulness and this much needed respite. It will really seem like a VACATION. We definitely will need to celebrate. I'm thinking maybe a visit to the Olympic Coast is in order. We just need to continue praying there are no hiccups once she is weaned off the prednisone.

Averting a Hospital Stay

Sarah had her labs drawn again this morning and her important numbers all dropped. Yay, God! So, we will not be enjoying the luxurious accommodations of Seattle Children's Hospital this go-around. Dr. Horslen says we will need to keep her on the regimen of prednisone and have her labs checked out again next week.

Good news - now we can enjoy a three-day weekend together, in our home!

Thanks for the prayers.

More of the Ups and Downs: Life on the Teeter-Totter

I'm working long hours at my job this week and my energy level is already low. Sarah's labs have spiked up again, though not enough to require a hospital visit. Her AST is 98, ALT is a little over 300 and GGT is 216. We just took her off the Prednisone (steroid) a little over a week ago but have to put her back on that. Her tacrolimus has been raised as well to 2 mg in both the morning and evening. On the one hand, we are grateful the transplant team is just increasing the dosages at this time instead of ordering an ultrasound and biopsy.

Sarah will have to get labs drawn again this week, likely Wednesday night although I'm not sure if the meds will kick in that quickly to impact the results. Just praying we don't need an extra visit to Children's.

If anything God is really teaching us the lesson about living day by day and not worrying about tomorrow. We have to enjoy every minute of every day with Sarah, our children and in our marriage. There are no guarantees in life. We can survive if we relish the joy of each day together. Life is precious, don't take it for granted.

The Disappointment of Getting "the Call"...but not a Liver

It's been on my heart to tackle this subject for some time. Our family has made some great friends with other families who have children with biliary atresia or other liver diseases. We have been touched by their circumstances and blessed from knowing them.

The most difficult time for any family awaiting transplant is the time leading up to "the call" - when the hospital says they have found a liver that may be a match. It's during this time when the waiting seems unbearable. We can vouch for that and we were fortunate to receive a liver fairly quickly.

There is a time that is even more difficult on parents - after they receive "the call." No exact science can guarantee that the liver which has been found is going to be a perfect match. Many times it is, but many other times it is not. We have watched three families we adore walk through this time recently.

All have gotten the unbelievable call that a liver is finally available for their little one. Braeden was first. It was a go until the hospital called them while the family was on its way and said the liver wouldn't work. Next was baby Chloe. The operation was scheduled and the family was rejoicing only to be shattered by the news this, too, was not the right liver. Finally, dear Austin, who has been experiencing many challenges in recent months, was set to receive his liver today but it also fell through.

I won't begin to question why this happens to some families and  not to others. It would be easy to shake our first at God and say, "Don't you love my baby?" but we are all aware that response rings empty. God does love each of our children, infinitely more than we do and yet some families must walk through this desert island exercise.

We love each child so dearly and the parents and siblings just as much. We pray often that the next call they receive will be the one that brings hope and healing not only to their little one but to their hearts as well.

Back Home

Patty and Sarah arrived home early this afternoon. It's easy to tell that Sarah really misses being home. Aside from the fact she loves her siblings dearly, and vice versa, she is all smiles and laughter. Of course, she is normally happy but these last couple visits to the hospital have been a little more trying for her. She's not crazy about all the poking anymore and she gets very restless in her room.

Her tacrolimus has been raised to the highest point since started on it. She gets 2 mg in the AM and 1.5 in the evening. This means her immune system will be even further "asleep" and she will be more susceptible to catching even simple colds. So, we will have to make sure she doesn't get around a lot of folks who are actively ill. This whole dance is a delicate balance between protecting the liver and keeping her from getting sick. It's a rollercoaster without the fun, but just as much excitement.

Thanks for your continued prayers. It would be nice to not have any rejection episodes for a few months.

The Road Goes Ever On

Is this beginning to sound like a broken record? We just learned that Sarah has a very mild rejection. This is the 2nd time out of four that the biopsy has confirmed some form of rejection. While I normally would like to have 50-50 odds, I'm not really digging this. Patty and I are fully aware of this new "normal" we reside in but its beginning to grate on me like nails on a chalkboard. My frustration level is increasing and I don't like the person it has made me at times. Obviously, PTSD cannot be underestimated. Somehow I must have believed I could handle the stress and continual "surprises" like it was nothing; however, that is not the case. I would ask that you please remember me in your prayers, that God would restore balance and sanity to my daily life and that I can be the father and husband that He has called me to be. But enough about me.

As for Sarah, the biopsy results dictate a return to Children's for the steroid IV for four days. The good times keep on rolling. Based on her history the past six months, the docs prefer to not mess around with ANY form of rejection. This is understandable and a testament to their care and concern for Sarah. We continue to be ever so grateful for the doctors, nurses and other staff at Children's. Our road would be so much more difficult if we didn't live in such close proximity to such a hospital. I may be frustrated but we know several families who have had to travel from out of state to Children's for long stays. They have other children who must come with them or stay home with the spouse. I wouldn't survive that scenario and praise God that He has provided those families with super human strength.I ask that He continues to do so.

On the sunny side, they aren't noticing a fatty liver, which had been a concern the last biopsy. You have to take the wins where you can. Sarah seems to be doing fine otherwise. Her personality continues to grow as does her body. She is a shining light to all she meets and such a charmer. All our kids are cuties but Sarah's unique situation has made her a walking testament to God's grace.

It is also a difficult time this weekend for us. While we are celebrating the 1 year anniversary of Sarah's transplant, we are remembering the donor family and the grief they are re-living for a different type of anniversary. This sobers me when I being throwing a pity party. Our life would be missing a vital piece if Sarah were not with us. I can't imagine losing any of my children at any time in my life. So, even though things aren't always cherry pie and whipped cream here, Sarah's life alone is a constant reminder of so much. We have found that this is all part of God's plan. Our older kids are learning a great deal about compassion and other things. That will serve them later in life and has already made itself visible through Arianna's faithfulness with praying at school and Katarina constantly praying at meals that Sarah's tummy would get better.

I know this is a very lengthy post and an emotional one but I can't hide where I live. This is what our lives contain at the moment and hopefully this will show other people they are not alone in what they are experiencing. If we can encourage other families struggling through serious circumstances, then I willingly accept the craziness and instability of our own situation.

Kirk

Happy 1 yr Transplant Anniversary, Our Sweet Girl

We are finding it difficult to believe today is the one year anniversary of our little sweetheart's liver transplant. Those of you who know us and have been following our journey know what a hard road it has been for our family and we are eternally grateful for God's mercy and your tremendous support and encouragement. Sarah continues to pass milestones as she grows just like any other child. While the specter of rejection always looms, it has taught us to truly cherish the moments we have with Sarah, Arianna, Caleb, Katarina and all those who are precious to us.

Happy Anniversary, Sarah! May this be the first of many thanks to the gift of life from the donor family. God, please continue to bless and heal that family. While our year has been difficult, it is nothing compared to living with the loss of a child.

Kirk and Patty

Another Day, Another Biopsy

Sarah's liver labs jumped slightly Thursday and so, guess what, another biopsy will be necessary Friday morning. Patty has to have her there by 7:45am for an ultrasound and some lab work. The biopsy is scheduled for 11am. Please pray Patty and Sarah have a good morning together, that someone can come and visit them at Children's and that the results come back negative Saturday for a rejection.

As always your prayer and support are cherished.

Help Make The World Aware of Biliary Atresia-Join the Campaign

Facebook | Help Make The World Aware of Biliary Atresia-Join the Campaign: "Every 12 minutes another name is added to the national organ transplant waiting list. Nationally, nearly 17 people die each day waiting for a transplant. The need for donors has tripled since the inception of the waiting list"

Twins with Biliary Atresia need liver transplants NOW

I can't even fathom what this family is going through right now. Please keep them in your prayers. They have been waiting almost SEVEN months for liver transplants.


 

No Hospital Stay

Just wanted to update those of you not on Facebook that Sarah's biopsy results came back negative Saturday morning. So a hospital stay was not required this go around. Suffice it to say we were thrilled and were able to have a fun day together Saturday, which included family photos. Sarah must still have labs done every week, but that has been the norm so no change there.

Back and Forth

I have begun referring to our lives as the "new" normal. This is especially the case when speaking about Sarah's liver issues. She is still having weekly labs taken and visiting the clinic every other week. Well, yesterday her liver numbers crept back up again into the 100-200+ range. Not quite as high as her last episode that was diagnosed as mild acute rejection. Still, when you are a liver transplant recipient, the doctors make it a priority to insure nothing is happening to the liver itself - no damage, no true rejection, etc - and so, they continually take precautionary measures.

So, after Sarah's clinic visit Thursday afternoon, the docs ordered an ultrasound. This afternoon she will have another biopsy. Hopefully, this won't result in an extended stay. I'm even so bold to pray that they will let the girls come home tonight and call us tomorrow with the results. That is unlikely, but a guy can still hope, huh?

Nothing on the Ultrasound

The good news is nothing showed up on this afternoon's ultrasound. There are several blood tests the transplant team requested, outside the norm, including CMV, CDiff and Rotavirus. We won't know those results until Friday. While Sarah is acting completely normal, they want to be sure there is nothing causing the frequent diarrhea and pale stool.

Of Stool Color and Bile

Sarah and Patty are at clinic today. Monitoring stool color is one of the things that parents of liver transplant recipients are trained to do, way back even prior to transplant. The color can tell whether there may be something wrong with the flow of bile out of the liver. Since her last hospital visit, Sarah's "pooh" has been very pale, which is 'bad' according to the picture card we have that displays different colors. That's all very interesting to you, I am sure. Stool color. Anyway, she has also had very runny stool (yeah - more fun) and so we were a bit concerned, despite liver labs looking good. Essentially, the pale stool means Sarah is not retaining fat from what she eats.

Patty just notified me the transplant team is going to perform an ultrasound to make sure there is no bile obstruction. They did mention even on our last clinic visit that GI viruses have been going around so it could be something as simple as that.

We will keep you updated with the results later tonight.

Cherish Each Moment

While we are excited about the opportunity for Sarah and our family to further advocate for liver diseases, our hearts are broken today. In this small world of biliary atresia, we have met many families at Seattle Children’s Hospital and online through Liver Families, Facebook and other avenues. As parents who have experienced firsthand the things that go wrong with a little one’s body when a liver does not function properly, our hearts & eyes have been opened greatly to the struggles and pain other families face. The brave little children who have such cheerful hearts in the face of adversity have strengthened and touched us. Sarah has been a trooper through her whole experience but there are others.

One such little girl is Blair. We began following her on the CaringBridge website a few weeks ago on the tip from our good friend (and mother of a BA baby), Beth. Her mother had signed up to be the donor for transplant and things were looking good, full steam ahead. We learned over the weekend that the first transplant did not take and a second transplant was needed. Sadly, little Blair’s body could not stand the wait between losing the first transplant and gaining a new one. She left our world and returned to the arms of Jesus, a beautiful 10-month-old girl who had charmed many people in her brief time on earth. Her parents’ own faith seems to be carrying them, based on their CaringBridge entry. It is in these difficult times we see the greatest blessings in life. While we may not be able to explain why these things happen and treasured little ones are taken away, we do know that even their brief time with us was inspiring and for a purpose. The love we are able to share with them and that they show us is almost impossible to put into words.

Blair is not the only child that has died from liver disease or a transplant that did not take. There are others and this is why our family is so intent on reaching out to other families living through this difficult time. Whether their child is waiting for liver, intestines or other organs; whether they have already had a successful Kasai and are doing well (praise God, we know a few of them!); or whether, they are in dire need of a transplant TODAY, we feel obligated to offer whatever encouragement and support we can.

I am writing this post today as much to help wash away my own grief for Blair and her family – for her two-year-old brother that probably won’t remember his sister – as to remind all of us how precious life is and how important it is to treat each moment with loved ones and friends as if it were your last moment with them. Cherish the minute, the hour, the day. And begin doing it now.

Our Little Celebrity

Will wonders never cease? Today, I received an email from the regional American Liver Foundation office asking Sarah to be their 2010 honoree. She would be said honoree for their Flavors of Seattle Gala fundraiser in April and again for the Seattle Walk for Life in September. The girl is a celebrity and doesn't even know it! Or maybe she does.

What a blessing this is for us and it opens the door of opportunity to share more about liver diseases like biliary atresia. God works in mysterious ways.

To find out more about the American Liver Foundation, go to http://www.liverfoundation.org/ and search by your state or region.

Home Again

Sarah and Patty returned home early Sunday afternoon to much rejoicing as you may expect. The list of meds for Sarah has increased at least for the short term. Since she is on the steroid to restore things to normal, they also have her on rinatidine to help her tummy deal with that. Her tacrolimus has been increased to 1mg at night and her standard .5mg in the morning. They also prescribed a zinc supplement to help with her scalp issues. Thankfully, it seems that problem has already improved and we are grateful for that.

On Tuesday, Sarah and Patty must return to Children's for clinic and labs. I imagine we will maintain the weekly lab routine for now as well. You just never know what to expect but that is one of the things you can depend on with life: the unexpected.

We couldn't maintain a grain of sanity if it weren't for the continued prayers and encouragement we receive from our dear family and friends, and without the grace of God. Thank you for continuing to follow us on this rollercoaster journey.

It's All in the Numbers (part 2) and our love for Children's

To better aid in seeing what "good" vs "bad" numbers look like, here are Sarah's lab results since Wednesday, night when Patty brought her in for her weekly blood work:

AST - 662 (2/17), 123 (yesterday), 65 (today)

ALT - 926, 543, 353

GGT - 373, 290, 233

The numbers from Wed. night were the highest we have seen since PRE-transplant so it was apparent something was amiss. Fortunately, the transplant staff was all over it and they started the steroids before biopsy confirmation of rejection so we wouldn't have to spend extra time here. Dr. Reyes (see Feb 4 post) had a forlorn look when he visited Patty and Sarah on Thursday. He felt bad because he had lowered the tacrolimus intake which was likely responsible for our return to Children's. It's this kind of concern and care - and the fact the Giraffe floor nurses just love Sarah! - that make us so happy and blessed to live so close to Seattle Children's Hospital. We know there are those in the adjoining neighborhood who opposed their expansion, but for us we could never fathom our lives without these people, some of whom have become dear friends.

It's All in the Numbers: Lab Results

So my baby girl had a wonderfully blissful night of sleep before awaking shortly before 6am. She ate a waffle breakfast and then proceeded to receive her morning meds. The blood work followed and I have received those results back. I have included some links so you can see what each important lab means in terms of her liver. The three "majors" are AST, ALT and GGT.

On the bright side, all of her labs seem to be retuning to normal thanks to the steroids, which she received at 8:45 this morning. She is still at a high dosage level so they send it through an IV for one hour. Once we go home, we will be substituting a smaller dosage via straight liquid as we do for all the other meds with the exception of the tacrolimus which comes in capsule form.

As I mentioned, here are the links for the major liver labs: AST , ALT and GGT.

So far, we are on target to leave tomorrow. There was some concern on my part about the color of her stool but the on duty doctor said he has seen that in some other patients on that type of steroid.

Mild Rejection Confirmed

I'm now on duty at Children's to let Patty go home with the kids for the next 24 hrs. We shared some Garlic Jim's pizza there and they headed home. Praying for a great night and wonderful day for them tomorrow.

While we haven't met with the transplant team regarding the liver biopsy it was confirmed about an hour ago that Sarah experienced a mild acute rejection due to lowering her tacrolimus (anti-rejection) medication. She has already had some of the steroids and that will continue - for now, we don't know the duration - along with some other meds to counterbalance that. So, we have a few more meds we have to give daily once we are home but in the long run, it should all work out fine.

The docs have also increased her tacrolimus to the original dosage so we shouldn't see further problems, at least for the time being. One positive side effect from the steroids is that Sarah's cradle cap and itchy scalp seems to be improving. Praying that will continue.

We should know by the end of the day Saturday, based on labs, if we will be coming home Sunday or not. Keep praying Sunday is the day.

Love those Eggs!

This morning we are waiting for the latest lab results. Sarah was started on the steroid IV medicine at midnight and we still won't know the official biopsy results until late today or this evening. In the mean time she is motoring around the room and hospital with Patty.

The funny part is that this morning she actually ate scrambled eggs for breakfast. None of our other kids (nor Patty) eat eggs. Apparently the steroids increase the appetite (hope they have a LARGE supply of food on hand!) so Sarah will likely be eating very often the next few days.

I will be heading down after I pick up Arianna and Caleb from school to swap out hospital time with Patty. More updates to follow as we hear any news. Thanks for your continued prayers and support.

Liver Biopsy

Sarah just went in for the liver biopsy. It only takes about twenty minutes but she must stay in recovery for one hour post-op. Its a very simple and non-invasive procedure. Fortunately, she had been sleeping for the past hour so hopefully she will be okay.

We won't know the results for at least 24 hours. Dr. Horslin said we will start Sarah on the steroids to get a head start if it is indeed acute rejection. According to him and the ultrasound tech, it is highly likely that is what we are dealing with.

I will continue to send updates and post to Facebook as well when the news warrants.

Thanks,
Kirk

As Sarah's Liver (and meds) Turns

Good morning,

We just received a call from Marsha in transplant clinic that Sarah's labs from last night showed high numbers in both the AST and ALT. I won't bore you with the medical names and definitions but those are two of the important liver labs Children's follows at each visit. It may be due to the fact that we reduced her tacrolimus at the last clinic and we are seeing the effects. If you review our last blog entry regarding clinic, you will see what I am talking about. 

Ok, just got off the phone with Marsha myself and we have to go TODAY for an ultrasound and biopsy. Please be praying this isn't an acute rejection and that we won't have to stay more than one night (the minimum required). Our family is still struggling getting things back to normal and this won't do the other kids any good.

Kirk

A Little Bit about "Over" Immuno suppression

Today I had the good fortune to accompany Patty to Sarah's monthly clinic at Children's Hospital. Sarah's liver labs are looking extraordinary so everything appears good on that front. I got to meet the resident comedian, Dr. Reyes, who also happens to be the director of transplant services. He is the man who searches for donors and oversees surgeries at UW and Children's. He was a wealth of information and in our consultation with him today, a few things were noted.

First, Sarah still has very bad cradle cap. It gets so bad she picks at it and her head will bleed from the scratching. She also pulls her hair because of the irritation. This has come and gone but bugs her a lot. Dr. Reyes says that the tacrolimus can cause hair to fall out so that could be one of the reasons for her discomfort. She also gets dry skin around her mouth, no doubt somewhat because of her binky.

Second, the only lab numbers that Dr. Reyes is concerned about all look good. There is one that could indicate bile problems, but that is within the normal range.

Third, because of Sarah's skin issues and due to past experience, Dr. Reyes has suggested lowering the tacrolimus (the anti-rejection drug) to two doses per day three days a week and one dose per day the other four days. This is due to the possibility of an over immunosupression, even at the small dosage Sarah is taking. This type of hypersensitive immune system could be the reason for the scalp and skin issues.

It seems we have entered the stage (or have we really ever left?) of "balancing" things in Sarah's medical regimen. According to Dr. Reyes, about 70% of transplant recipients experience this drug toxicity, or hypersensitive immunosuppression. This can lead to future issues and that is why they pursue such a proactive stance. He admitted that they are right 70/30 in these cases. The 30% they are wrong can lead to liver rejection but he made the point those patients have been treated and returned to stable conditions. Not one has been lost in any way. That was comforting. We have realized from the start of this adventure that our lives (and Sarah's) would never really be "normal" again. A transplanted organ tends to do that.

We just roll with the punches and move on. This was good information to learn and will be helpful moving forward. As a logical being, I like to have all the facts and possible scenarios in front of me so I have an inkling of what to expect. There are always exceptions and surprises but to have some type of clue what is happening is important to me. Then again, maybe that is something God has to work on within me and maybe its because it is my daughter we are talking about.

We aren't concerned because Sarah is doing so well, the staff at Children's is unbelievable and she is in the care of Jesus. Your continued prayers are appreciated. Our lives would be incomplete without your involvement.

God bless,
Kirk

No News is Good News

While the entire Kraft household has been fighting off colds, Sarah remains great. She had negative EBV for her last lab and she continues to motor around the house and show off her sunny disposition (and dancing prowess).

We have clinic scheduled for this Thursday but don't expect to hear anything new. Sarah eats like a monster somewhat reminiscent Sesame Street's Cookie Monster. Yes, she loves food THAT much.

I just wanted to update everyone who isn't on Facebook and apologize for being lax in updating the blog more frequently.

Kirk