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.