Our God Reigns

It has been an amazing few minutes. We finally decided to call Children's since we hadn't received a call about the biopsy results at 3pm. The doctor called back and said that, amazingly, Sarah's major labs had dropped closer to normal levels. Then he called back just a few minutes later to tell us that even though the biopsy was not complete yet that there appeared to be no signs of rejection! Is God truly AWESOME or what? So, not only do we not have to worry about immediate issues with Sarah but Patty and her don't have to stay overnight at all. Praise God!

We will have to call the transplant team first thing Monday and probably get labs done again but this is such a HUGE blessing.

Wait and See

Patty just called and the biopsy went well. We won't know any details until tomorrow afternoon but the good news is that if her labs look good in four hours and there is no internal bleeding - which can sometimes occur - both of them can come home. Then, once we hear about the biopsy we would head back to be admitted if need be. Of course, we are praying that won't be necessary but we are also trying to be realistic. Sometimes it pays off to live so close to Children's!

Biopsy Today

Sarah will have her biopsy around 11:30. Check-in for pre-op is at 10:30 PST so if you could be praying during that time, it would be appreciated. Generally, this requires an overnight stay and once they have the biopsy results back we will know better if there is any damage to the liver and if a longer stay will be required.

Kirk

More than a Little Noise

Hi all,

I know it has been some time since I have updated the blog. I had meant to do it in the past week but since there continued to be no news of any substance, I decided to pass.

First, for those of you unaware, we are lifting up little Jordan Gilbert who lives in Ontario, Canada. His new liver is not working and he will need another transplant ASAP. The doctors told the family they could keep him going for two weeks but 11 days have now passed. The average wait for a new liver is generally 2-5 days but that is long past. Please keep this family in your prayers as they deal with this heartwrenching situation. Little Jordan is listed in both the US and Canada but so far no match. He appears to be a little fighter and is hanging in there. If interested in updates, you can access it through the CaringBridge website.

As for little Miss Sarah: things have been going along swimmingly as she puts on weight, rumbles around the house in full walking mode and continues to show off her sparkling personality. However, after her labs this morning prior to her monthly clinic, Patty called me. Her liver numbers have risen (ALT 324, AST 333, GGT 141) sufficiently for the transplant team to be concerned she may now be experiencing acute rejection. This could be attributed at least a little to the fact her tac (the anti-rejection med) is at so low of a dosage. If there are other reasons, those will be forthcoming.

Suffice it to say neither Patty or I were exactly thrilled to hear this news. As it stands right now, Sarah will have an ultrasound at 2pm PST today, followed by her normally scheduled clinic visit. Tomorrow at 1pm she will have a biopsy to get further info. It is very likely she will have to be admitted to Children's for 3-4 days so the team can treat this condition. As more information becomes available, I will email, blog and post to Facebook. The good news is Patty and Sarah will be home tonight before heading back tomorrow.

Please lift Sarah up in prayer, that this will pass quickly and that her liver will continue to function normally. Also, that she will be okay in the hospital for a few days as she is quite the mover and shaker now. Undoubtedly we will have to take her for long walks during her stay. Please pray peace over Patty, me and the other kiddos, but particularly for Patty, that she is at peace.

Thanks for your continued support. It stinks but we knew our lives would be more exciting the day Sarah was diagnosed with biliary atresia. The wild ride continues...

Kirk

October is Liver Awareness Month!

http://www.liverfoundation.org/chapters/lam2009

Surgery Complete UPDATED 6:57PM

Just a quick note: surgery was successful. Dr. Inglis ended up taking out both the adenoids and tonsils. We are praying this will alleviate Sarah's breathing problem. He noted she would be here a "couple" days so not sure at this point whether they want to observe her for multiple nights or not. The good news is that Patty can breastfeed her immediately and she will be headed down here to Children's as soon as Sarah has her new room in the Giraffe wing.

Thanks for the prayers and please keep them coming. Patty has been feeling under the weather since yesterday afternoon and not sure if it is allergies or a cold. You know a hospital stay never helps that stuff.

UPDATE: Dr. Horslin stopped by during my stay today and noted that the EBV count was negative! This means no illness remaining in Sarah. Her immune system fought it off! They will be looking at her tonsils and adenoids to see if there was any PTLD present (this is the lymphoma) but hopefully that is not the case. She is really fussy and in a lot of pain according to Patty who took over at 3pm. Please pray for peace and rest for both Patty and Sarah; that Sarah would heal quickly; and that Patty would be overwhelmed by God's grace.

Kirk

Goodbye, Adenoids!

Hi all,

For those of you not on Facebook, here is the latest:

We met with Dr. Inglis in Otolaryngology yesterday – that’s the ENT dept for those of you not current on your medical lingo! – and they have decided to remove Sarah’s adenoids. The surgery is a 15 minute procedure and is scheduled for Monday at 10:15am. Thankfully we were able to meet with Dr. Inglis on short notice AND get the surgery scheduled. The short of it is that the adenoids can change post-transplant and the EBV (Epstein Barr virus) that Sarah has been fighting can make them swell. This could account for her breathing issues the past few weeks. The reason they would just remove them is that the EBV can also lead to lymphoma if not dealt with expeditiously or if EBV numbers are high. Sarah’s EBV has not been real high but has been going up and down for several weeks. 

If you could be praying for successful surgery and that Sarah would not be in too much discomfort as she recovers. The docs say she will have a sore throat for a couple of days and while she will be at Children’s at least until Tuesday, she should be fine otherwise. Please also pray she doesn’t get too frustrated if she has to remain in a hospital bed. Hopefully we will be able to “take her out” to at least walk around the hospital.

I will try to update the blog more often so if you aren’t already following us there, please do. As always, I will also try to send out regular emails and post to Facebook as well.

Thanks for continuing to stand with us as we travel the post-liver transplant highway.

Blessings,
Kirk and Patty

HAPPY BIRTHDAY, BABY GIRL! Sarah turns 1 today

Happy Birthday to our little princess. She has had a busy first year, that is for certain. The joy she exudes is contagious and has blessed not only our family but others as well.

May God bless your life, little one. We love you. - Mommy, Daddy, Arianna, Caleb and Katarina

Sarah's 1st Birthday Celebration Details

We are all set for our little sweetie pie's first birthday celebration. Details are below. If you need any further information or need to RSVP, please respond to the blog, shoot one of us a message in Facebook or email/call us! Hope to see you there and thanks for all your prayers and blessings.

Date: September 7 (Labor Day)

Time: approx 10:30am to 5pm 

Place: Forest Park in Everett

Location: the covered picnic area right next to the big playground!

What to bring: If you plan on staying with us for awhile, some food and/or drink item would be appreciated to share. I plan on BBQing burgers and hot dogs but if you want something else, I (or my fellow BBQers) will be happy to grill it. But in essence, NOTHING is required to attend. We are just looking forward to celebrating Sarah's birthday and God's blessing upon her young lfe.

Kirk and Patty

Another Clinic, Another Milestone

We have another good report from Sarah's clinic visit at Children's today. First of all, thank you for praying against sickness. It appears she is just battling a cold and the continued effects of teething. There was no ear infection and her liver numbers dipped only slightly. If they had dropped drastically, we would know something was up.

Our little munchkin (or should I say "porkkin"!) is now at 21 1/3 pounds, up to the 60th percentile for her age. WOO HOO! She has moved up to 25th percentile for height so there is basically progress on all fronts.

She continues to amaze us with how quickly she has learned some baby things since her transplant. She is able to climb into the little toddler chairs we have and to turn around and sit. She can then stand and fall on her knees in order to leave the chair. She is grabbing things and standing regularly, particularly along our stairs and with our stools. It's such a joy to watch her in action. Plus, she motors all over the place while in crawl mode. Sarah is also serving as our resident microbiologist, discovering and observing EVERYTHING, no matter how tiny, that may be on our rug and kitchen floor. And much of those items find their way to her mouth unless we are watching. Yikes! But babies will be babies, and it is all a gift from God.

Kirk

Hopefully, it's nothing but...

I just wanted to ask for your prayers for Sarah. She has been fighting off a virus, I believe the EMV, and has been having diarrhea more in the last 24 hours. Dr. Murray would like to see her tonight to have labs taken and check her stool to see if there is any other concern.

Thanks in advance for your faithfulness. She has been really sleepy lately as she tries to fight off the bug and while we aren't overly concerned, we would like to avoid any hospital stays if at all possible.

Kirk

Our Little Stair Climber

Well, a lot can be said for determination. Our little munchkin completed the arduous task of scaling BOTH flights of stairs enroute to the second floor of our home today. She only set foot on the first step this past weekend, but cheered on by her adoring fans (Arianna, Caleb and Katarina) she made it to our landing and then zoomed up to her mommy sitting at the very top of the stairs.

An amazing feat and another example of how far the little sweetheart has come in such a short time.

NK cells linked to liver disease

Interesting article regarding NK (natural killer) cells and how they may impact the onset of biliary atresia.
Kirk

Sarah's Birthday Celebration

Good morning, friends!

We wanted to announce the upcoming birthday gathering in celebration of Sarah's birthday next month. Labor Day, September 7, is our target date and all are welcome. If you could RSVP as soon as possible so we can determine the appropriate venue, that would be great. Our desire is to find a place where the kids can freely frolic and play, and where we can BBQ some grub.

Please contact us via any means - leave a comment here, email us, send us a message over Facebook or (if you are in the area) give us a call!

We are looking forward to a wonderful time celebrating the wonder and blessing of Sarah's young life.

Thanks for sharing in this journey.

Kirk and Patty

Our Amazing Girl and The Wonder of a New Liver

Wow, how awesome is our God? I will tell you. Patty and Sarah went to Children's for clinic Thursday afternoon. Not only did Dr. Reyes reduce clinic to once a month but reduced the labs to every other week (this changed only for next week because Sarah could have the beginning of a little cold so stay tuned). If that weren't enough, he authorized not one, not two but THREE meds to be dropped. Can I hear a big WOO HOO from the crowd please?

This is simply amazing. Every visit Patty is surprised by how well the docs say Sarah is doing but we see it every day. She is such a happy girl and full of curiosity and adventure. It is such a blessing to watch her grow and to change daily and to think a few short months ago she was in such different circumstances.

It's difficult to digest what has transpired and incredible to observe firsthand what a fully functioning liver can do for one's life. We are blessed beyond belief. God be praised for the work He is doing in Sarah's little body and for the work He is doing in our family.

I will be posting more to the blog regarding other families we have come in contact with through Patty's hospital stays as many of their kids need prayer for their own livers and health.

Rockaway Beach 2009, part 2

Family Vacation - Rockaway Beach 2009, part 1

The pictures say it all. Sarah's first vacation!

The Girl is a Star

But you already knew that, right? Our little sweetheart continues to charm the Seattle Children's staff including Dr. Reyes, who says she is perhaps the cutest transplant recipient he has ever seen.

A few newsworthy items from Sarah's clinic today:

Our little chunkamunk is tipping the scales at 18.1 pounds.  Besides regaling us all with her sunny personality, this girl can eat!  Seeing the difference between pre-transplant and post-transplant has been amazing. Sarah is up to three jars of baby food mixed with oatmel every day AND is still nursing 4-5 times per day. "Wow" was all her nutritionist could say.

Due to her high consumption diet, she has moved from 7th to 31st percentile in weight for her age. Incredible.

Some of her lab counts were high but those are due to the steroid prednisolone that she has been taking. Dr. Reyes told Patty to reduce the dosage to every other day and hopefully within a month, Sarah will have reached the point that she can drop that med.

Along those same lines, in a month when she is off the pred, she will move to clinics once a month, then every three months than six months, then once a year! The once-a-week labs will continue for the time being.

There had been some questions regarding taking Sarah certain places or exposing her to too much sunlight. Dr. Reyes dissauded our fears by telling Patty to "treat Sarah like a normal child." Pretty funny. He said take the same precautions you would with any other children like  wearing sunscreen outside. But he basically said we could take her out wherever we want and that we could get a dog (this is worth another thread entirely - our other kids have been asking for a dog for sometime). He even told Patty several times to let her roll naked on the sand during our vacation! So audacious.

We are tickled pink with all the good news regarding Sarah. We have all truly been shown God's immense grace through this experience. With every little milestone, we take another leap for joy.

Thanks for sharing the ride with us.

Kirk

Long Overdue Photos - Our Beautiful Children

Say goodbye to One More Med

After this week's labs, we are able to remove nystatin from Sarah's daily regimen. It was a four-time-per-day med so that deserves a WOO HOO. It's the small things that bring joy these days.

Further Encouraging News

Patty returned from clinic today with more encouragement. Sarah only needs to have clinic every other week! WOO HOO! She still needs labs completed every week but this is a wonderful sign that everything is going well. She continues to gain weight, eat well and all her liver labs look wonderful. 

We are so encouraged by this news and watching Sarah thrive first hand. She is now moving around the room, though not technically crawling. She scoots herself backwards on her tummy and can turn around in circles. She is able to lay down and sit back up on her own. Right now, she is just in a really fun stage.

A Short Stay

Good news- it appears the girls will be returning home Wednesday. Sarah has made adequate progress that the docs are convinced the blockage is no longer a problem and is dissipating. She nursed without incident and now her NG tube and monitors have been removed.

While these "surprise" visits to Children's can be exasperating, its important for us to keep in mind that these little hiccups will continue to occur from time to time in Sarah's post-transplant life. The important thing to remember is that we get her care as soon as she shows any signs of sickness so it can be addressed quickly. It is definitely a balancing act.

Evening Update 6/8/09

Here is the latest:

Sarah does have an intestinal blockage of some kind. So, she cannot eat any food / breastmilk until that clears or passes. They already had her on IV fluids anyway and the NG tube has been draining the stomach, so that should expedite the blockage clearing. Patty and the docs don't seem overly concerned and they told her this happens all the time and most people never even know it is happening!. Pretty wild.

I will send another update tomorrow once labs come back to see if they nail down the culprit as bacteria of some kind or a virus. They explained it to me that a blockage only comes about when the intestines stop flexing, thus creating the "backup" that can result in vomiting since there is no place for the food to go.

Thanks for your continued prayers.

Kirk

Sarah 11am update

OK, Sarah and Patty finally have a room after over 8 hours in the ER.

Here is where we currently stand: Currently checking stool for CDIF, Rotovirus and white blood counts; docs will be placing an NG tube to clean out her stomach and to clear out the obstruction if one is present. So, as usual, we remain in a holding pattern for the cause. Sarah still has a low-grade fever (100.4) and is simply exhausted trying to stay awake and watch what everyone is doing. Little Miss Curious!

This visit is a little different because of the vomiting. Thank God the liver is functioning normally though.

Thanks for your prayers.

Kirk

Hopping Back on the Rollercoaster!

The latest from Patty: Sarah's lab numbers are high, so they are wondering why: gallbladder, blood clot, infection? Being admitted at Children's again :( Praying for God to quickly reveal reason...

Temp was 101.3 when they checked at 3:30. They have also taken their standard chest x-ray. Sarah was sleeping comfortably when I left, with an IV in her foot. Waiting to see WHAT this is and HOW LONG she may be in the shop.

God be praised. At least we didn't wait for her vomit all SEVEN times!

More later...

Kirk

Sarah Update 2:50am

Firmly planted in the ER at Children's. Sarah's heart rate is 199 and she is very dehydrated after vomiting six times since 1230am. She hasn't had a wet diaper since before 8pm. Right now, her temp is around 99.3 so hard to tell what is causing her problems.

Vomiting Episodes

Sarah has vomited three times in the past hour. She is now dry heaving and we don't know why. The oncall GI doctor said to bring her in if we are concerned. She currently doesn't have a fever but she may have caught something. We need to be on the safe side. Will update more later here and on Facebook.

The Latest

As summer heats up, we certainly are wishing we had purchased one of those portable air conditioning units for our house. Yikes - it was 85 degrees on our second floor today. But we are also grateful to the Lord for the sunshine, remembering how cold and snowy this past winter turned out to be. We even ventured out to Red Robin as a family today just to reach some of that A/C!

Sarah continues to thrive. She is going ga-ga over her baby food. So far she is eating rice/oatmeal, green beans, mixed vegetables, carrots and bananas! She continues to put on weight and is closing in on 17 pounds - 16.72 this past Tuesday. And a great bit of news is that we can skip the Thursday blood tests due to her Tac level being so good. 

God has been so good to us and we continue to pray for health over Sarah and the other kiddos and that her body fully accepts this liver for the remainder of her life.

The Fam

Sarah loses the NG tube!

There is joy and pandemonium in the Kraft household today. Sarah's NG tube has been removed. Yeah! She is now "free" from all artificial infringements upon her little body.  She is now up to 16.56 pounds and unless she loses weight drastically for some reason, we should never see that little yellow tube ever again.

Now, I just can't wait to see her crawl. She has been rolling back and forth pretty regularly the past few days and even falling forward on to her stomach - on purpose. I don't know that her arms are strong enough to take her where she wants to go but her legs are ready to enter a bike race!!!   :o)

The prayer is now that Sarah continues to sleep through the night without her constant milk supply. But what a great day!

Praise God,

Kirk

Prayers for Jane

We are asking for continued prayers for some dear friends, Ray and Jane Arney. Ray is a good friend of mine from back in my Navy days. Jane has cancer that is spreading in her brain. Please see their blog at http://dorkman.wordpress.com. We need God's miraculous healing power now!

Thanks, Kirk

The Broviac Line comes out!

Pretty exciting news for us - at 12:45 today Sarah will have her broviac line removed. YEAH! It's a nice birthday gift for me and a relief for Patty who is the one who has to flush and clean the line twice a day.

Sarah is doing extremely well and following yesterday's clinic the docs have decided to take her off the NG feedings for EIGHT hours a day. She is looking extremely good and I will be posting photos soon.

Kirk

Good News Tuesday!

Patty and Sarah just returned from Children's and things are continuing to look up for our little one. Her liver numbers are all basically normal or very close to normal. Some of her red blood count numbers are high but they attribute that to the fact her body is trying to fight off a cold (like the CMV). She is now 15 1/2 pounds - she gained .25 lbs from just last Thursday which is outstanding. Yeah, Sarah!

The docs have now authorized her to be off the NG tube feedings for six hours per day instead of four to see if she will resume breastfeeding normally since her weight is looking good. On top of that, they said next week the broviac line can finally come out of her chest.

Praise God for His faithfulness and thank all of you for your continued prayers.

Kirk

"Remember not the former things..." UPDATED

Patty received a revelations of sorts yesterday. God reminded her of one of her favorite passages. It is so applicable to our lives right now and most particularly to Sarah's new liver.

Isaiah 43:18-19

Remember not the former things, nor consider the things of old. Behold, I am doing a new thing; now it springs forth, do you not perceive it? I will make a way in the wilderness and rivers in the desert.

Some thoughts: the "former" and "old" things obviously relate to Sarah's damaged liver. The "new thing" was her precious new liver received in God's perfect timing, allowing us to refresh ourselves even while in the desert. Patty's thought was awesome: that making a way in the wilderness and "rivers" in the desert referred to new bile ducts! And that could also apply to the blood that is now freely flowing through the liver, as it should be.

God is so good!

Cool, huh?

It's Clinic Time! - Tuesday's outcome

Patty took Sarah to her first post-transplant clinic visit Tuesday morning. Sarah had her standard blood tests in the AM and then the actual visit in the afternoon. Her labs looked great - only the GGT is still relatively high but is declining. So, the liver is functioning well and Dr. Healey said she looks great. She is still putting on at least a little weight. We still have her getting 2 oz. of breastmilk hourly through the NG tube until further notice. It will be interesting to track her weight over the next few weeks to see if she gains anything substantial. Patty is minimally breastfeeding her now due to the large intake through the NG. We are also beginning to supplement with a little formula to fortify the breastmilk.

This afternoon we received a call from Marsha, the transplant nurse coordinator, who advised us the CMV was high. For those of you not up to speed on your medical acronyms, CMV stands for the Cytomegalovirus. This is no big deal to normal, healthy person who will simply have cold symptoms. In an immunosuppressed individual CMV attacks the liver and other organs and can actually lead to organ rejection. Sarah was already on the meds to prevent CMV but apparently the dosage was not high enough. The dosage has been raised and we need to wait and see. She is asymptomatic but if she gets a fever and becomes symptomatic it will result in a one week stay with IV antibiotics. So much for taking the broviac line out!

If a further update is warranted following our Thursday clinic, I will post another entry.

The Next Stage of the Journey

With all of us together once again (hopefully for a VERY long time), we have entered the next stage in our journey - post-transplant. Sarah will be visiting Children's twice a week for clinics for the next month or two. Please keep those visits and Patty's back-and-forth driving for those appointments in your prayers. 

We have a new regimens of meds as well. Please agree with us that Sarah will take those with no issues. It is also crucial she continues to gain weight. Currently, the NG tube is supplementing Patty's breastfeeding with additional breastmilk. If all goes as planned, we won't have to go back on TPN at any point. But for the time being, the broviac line is still hooked into Sarah's chest so we need to pray against any infection. It is likely they will take it out in a month if everything goes as planned.

Thanks for continuing to stand with us for divine health for Sarah and her new liver. Rejection can happen any time up to a YEAR or more after transplant so we need to be vigilant.

Homecoming?

I just spoke with Patty and Sarah's labs are looking so good and she is doing so well that they may be coming home by Friday!

We are still looking at having the NG tube in place to supplement Patty's feedings with more breastmilk and are praying this will be sufficient so there will be no need for the TPN.

We have a lot more meds to dispense and I am aware of one that is very time sensitive so we will need to have a firm regimen down, which should be no problem as Patty had a schedule in place for all Sarah's pre-transplant meds.

Hallelujah! We will all be together again - of course, that sets up a whole new set of challenges and Sarah living in a "bubble" for a3-6 months but we will definitely take it.  Thank you, Jesus!

Tuesday Update

After relocating to a new room (and out of ICU!), Patty and Sarah have gotten comfortable. Not much sleep last night for either of them as one (or more) of Sarah's new meds actually are stimulants. Wow - and we thought it was tough to already get any sleep in the hospital!

Patty meets with the pharmacist at Children's today to become familiar with ALL the meds Sarah will be taking from now on. We have "training" on dispensing these the next couple of days.

They still have the NG tube in and will keep it in to get some extra breastmilk down in addition to that she will be acquiring directly from Patty. At this point we need to be praying she gets enough calories and nourishment from those two sources so that we DO NOT have to take the TPN home again with us at discharge.

Right now, the docs say we are on schedule to take Sarah home sometime next week but nothing firm at this stage.

Monday Morning Progress Report - Out of ICU!

At rounds this morning, just prior to my departure, the team agreed that Sarah could be moved out of ICU and back to the Giraffe 4 wing. Praise God!!!! Our little dreamboat is coming along splendidly at this point and the doctors are very encouraged. The average stay in ICU following transplant is about five days so she beats it by one!

We are still asking God to fully meld the new liver with Sarah's body as if it were her own and to prevent any possible rejection. She is getting more immunosuppressive drugs added to her regimen today but she can breastfeed and they are also supplementing that by putting some breastmilk through the NG tube. 

On the selfish side, this allows us to have our own BATHROOM and will allow friends to watch Sarah while Patty and I both get out for a bit. Our time together has been extremely limited - as would be expected - since we have been focusing on Sarah and the other children.

Thanks for your continued prayers - each day shows us more of God's sovereignty and goodness and leads us one more step on the path to recovery.

Sunday Morning Rounds

Dr. Healey visited this morning shortly before rounds. He is very pleased with Sarah's progress. She was eyeing his suspiciously while he was here and he joked that we all know who is in charge of the room!

Good news on a number of fronts: she will get her Foley out and will also get the Cortis neck line removed today. This will enable her to be...breastfed at some point today. While they will be putting a nasogastric tube (NG) back in to pump extra breastmilk into her, I think she will be delighted to at least have the opportunity to feed normally.

Tomorrow they will be adding some more immunosuppressive meds to her regimen but so far, they have no complaints with the liver. All the scores that should be coming down are doing so and at least at this early juncture, there are no concerns. As usual, everyone is dazzled by Sarah's sparkling personality which has returned in full form.

Looking Good but a little High BP

Sarah is looking good and doing pretty well. They mentioned to Patty earlier that she may even be able to bottle feed today or tomorrow and (gasp) breastfeed shortly after. The only issue right now is her rising blood pressure which is not that common after surgery. Dr. Healey may be prescribing intermittent blood pressure meds just to insure she doesn't exceed their expected BP range. At this time they will hold off.

Her pain has decreased and Patty said she has been pretty happy today. She has even been smiling at Coral, our nurse, but when I walked in she immediately cried! Hopefully I will get over that in a few days. ;o)

Sarah - The Day After

Day 2 - UPDATED 9:40PM

We have reached our second morning following transplant and I wanted to provide an update.

Last night, Sarah did have some issues which we suspect are pain related. Just a few minutes ago the nurse increased the amount of the pain med drip so hopefully that will help. She has been getting very agitated which has resulted in one of her abdominal drains leaking. They have had to change the dressing and bio tab on that one twice since I have been awake.

Frances from the transplant team stopped by and say she looks good. We are still a few minutes from rounds, so I will wait and see what the entire team has to say at that time. Frances did tell me she hopes to get Sarah out of her bed today to be held, which should thrill both baby and her mommy when she arrives.

Thanks for your continued prayers!

Kirk

UPDATE: The docs have approved removing Sarah's catheter, NG tube and perhaps even one of the other lines!

UPDATE 2: Dr. Healey reversed the original order to remove the tubes so Sarah had to have all of them restored as before. He thought it was way too early to remove them as she had only been out of surgery a little over 24 hours.

Goodbye Breathing Tube, Hello Gastric Tube

Dr. Healey reviewed this morning's ultrasound and they have removed the breathing tube. Sarah is resting comfortably and breathing just fine. There is a little swelling in her tummy but I think that is pretty normal. The PICU is so different from a standard room since the nurses never leave. They are continually hovering around and monitoring Sarah. The doctors come and go pretty frequently as well. She is well-cared for here, there is no doubt about that.

She does have a gastric tube down her nose to her stomach but that is pretty standard. At least it isn't bothering her too much with all the meds and she now has her binky to add some extra comfort. :o)

We are just day-to-day at this point but all things considered, she is doing exceptional and right where the docs want to see her. I am flying solo tonight as Patty has ventured home to grab Arianna from school and spend the night with our other kiddos.

It is very peaceful here right now and we have great nurses - Danielle and Lindsay until 7pm, and then Emily (whom I met briefly this morning) for overnight.

Our little Fighter

The Incision...hmm, that might leave a mark!

Too many tubes...before and after

Praise God for Sarah's New Liver

Patty and I just met with Dr. Healey. The transplant went without a hitch. While they didn't begin the transplant until close to 9pm, they were finished by 4am. The team used the left lobe of the donor liver, the same part they would have used if it had been a living donor. They also took the portal vein as Sarah's had decreased so much it wasn't of much use and would have impeded proper blood flow. As is expected in these type of surgeries, a transfusion was required and Sarah received over half a unit of blood. There is also a concern about blood-clotting so they will put Sarah on heprin for a little while. Blood clotting around the liver can cause issues that would negate the positive effects of the transplant so they watch carefully for this. Dr. Healey also mentioned waiting for Sarah to wake up and see how she does with all the medications they are giving her. She has already begun a regimen of immunosuppression meds and they will watch the balance of those as needed so the liver is not rejected.

It goes without saying they will be watching her like a hawk in the PICU and Sarah will likely be there about a week before moving back down to our normal floor. We are going to try and get some sleep and then should be available for contact later in the morning.

Thanks to all of you who prayed continually through the transplant time and special thanks to Kevin, Debbie, Dianne, Anne, Di, Cheryl and Justin who stayed with us during the procedure, the last two have stayed the entire night. This has blessed us tremendously. We also want to thank the group of people who came and prayed for us at noon - Lou, Mary Ann, Kimberley, Jim, Anne, Justin and Brian.

As the day goes on I will post further information and hopefully some post-op photos.

We so much appreciate your continued love and support, and ALL the prayers being lifted up for Sarah.
Kirk

The Three Princesses

Sarah is in surgery

The nurse came for us at 5:36pm PST and I handed Sarah off the anesthesiologists at 6:19. It will likely take about an hour to prep Sarah and then they will begin surgery. Both Dr. Healey and Dr. Reyes will be present, as two teams are necessary for this type of procedure. Dr. Healey came by earlier to meet with me and lay out what the transplant entailed. We also received visits from our social worker and the lead anesthesiologist. We are looking at approximately 12 hours of surgery. Dr. Healey said that it takes 3-4 hours just to remove the sick liver. They will be paging us throughout the process to provide updates. We are in for a LONG night.

Part of the prep will involve likely putting another line into Sarah's neck and two arterial lines in her wrists. She will have the breathing tube for the duration of the surgery and likely for a couple of days post-op. Estimated time in ICU will be about a week depending on how well she is doing. The total hospital stay will probably be about 10-14 days give or take a few days.

You have all been so faithful in your prayers and we are grateful for those who joined us today, in person and in spirit, between noon and 1pm. We had a refreshing time of prayer. Now, we just need to ask the Lord to guide Dr. Healey and the other staff as they move forward, and for Sarah's health following the transplant. We did learn that the liver is an adult liver, so Sarah gets 1/3 of it.

Leaving your 7 1/2 month old in the care of someone else is never easy but it is especially difficult when she will be in surgery for so long. I will provide updates throughout the night if there is anything of substance to report.

God bless,
Kirk

It's Official! We have a liver in waiting

Just heard back from the transplant nurse at 10:20 and we have a liver for Sarah! Transplant procedure won't begin until 4pm Wednesday at the earliest but we are so stoked. However, to keep even keel, it is important to note that there is still a slim possibility we could reach that point and the liver could end up not being perfect for transplant. That is our prayer request - that this would be the right liver for Sarah at the right time. 

For those of you planning to attend the onsite prayer meeting at Children's, it is still on for noon Wednesday.

Your prayers have helped us reach this point and a new life for Sarah is just about in reach. Keep it up!

Love,

Kirk and Patty

Potentially WONDERFUL News

We just received a call from the transplant nurse and Dr. Healey may have found a liver for Sarah. She cautioned this is VERY preliminary and it may not work out; however, we believe that with all the prayers that have been getting raised to heaven that our little girl will indeed receive a liver very soon.

Still, we have to not get too excited. When we receive another call, I will post one way or another so everyone can continue in prayer.

A Lead on Infection Frequency...Now, to get that new liver!

OK folks, strap yourselve in...again. Just spoke with Patty to get the details about today's doppler ultrasound. It's not exactly encouraging news. Dr. Murray suspects there are pockets of fluid around the spleen that may be little cesspools for bacteria and which may be the cause of these frequent fevers Sarah has been getting, and thus, our frequent hospital returns.

They are going to confirm this by tomorrow AM. The suspicion is that because we have only been treating Sarah with antibiotics for 7-10 days each time, that the little buggers go away for a spell but then another infection will pop up once the antibiotics are out of her system because they are not being fully eradicated by a longer dosage.

On top of that the blood flow her liver is getting worse. This is bad news because her esophagal varices are already grade 4 and no one - not us, the docs - are thrilled at the possibility of another bleed. 

The bottom line is twofold: a three WEEK regimen of antibiotics would be necessary to eradicate the bacteria residing in the pockets of fluid near the spleen. That translates into a three week hospital stay because of the strain of having to administer these 4 times a day at home in addition to the TPN. Second, this has created a more urgent need for a liver donor. All of these issues are the direct result of her liver damage and the only way to return her system to normal is to get a new liver. That, of course, has its own adventures post-transplant but our primary concern is to just find a donor match and move forward as soon as possible.

For those of you who have volunteered to help with kids, stay at the hospital, help Patty, etc. we will be contacting you in the next few days to begin scheduling time where you can be a further blessing to us. This is a difficult road to walk but has been eased by your continual prayers and support. We seem to be reaching the final stages of this part of the journey and while scary is still encouraging.

God, please provide a new liver and soon. Be our strength and our peace, Jesus.

Kirk

P.S. I will have another update tomorrow as I will be at Children's with Patty to get the full scoop directly from Dr. Murray, Dr. Healy and the other transplant doctors.

Infections and Veins

The IV nurse is trying to find a good vein on Sarah's foot to get an IV hooked up so they can get Sarah some blood. Her proteins are down and they want avoid giving her more liquid that could put fluid in her stomach. She has an infection of some kind but it hasn't been narrowed down yet. All we know at this point is the CRP, an indicator, is high and some white cell counts are looking strange which points to an infection. Plus, she is still having this on again, off again rash all over her body that we can't nail down the cause for.

Would you believe?

We are back AGAIN! Due to two 101+ temps in a little over 12 hour period from Friday night to Saturday afternoon, we had to bring Sarah back to Children's. Wow - we almost had a weekend as a family.

We came down here around 7pm and I finally got situated in our spacious new accomodations after 1am. Hopefully, this stay will be really BRIEF. Patty went home about 11 so the kids could wake up with her in the morning and head to church together.

We could really do with an end to this madness. I have been pleading with God for just a couple of weeks completely together as a family. Our light at the end of the tunnel is that new liver or donated portion of an adult liver. We are asking God to provide one soon and that our craziness will at least shift to the kind that will have us all at home.

Kirk

Coming Home

After Patty completes her TPN refresher, she and Sarah should making their return home after 24 days at Children's. Hopefully, we can have a few weeks of quality family time together. Thanks for your continued prayers and support.

Feeling the Love

Both Patty and I have been overwhelmed by the outpouring of love all of you have given in this time. We are particularly touched by those who have offered to sacrifice a part of their own liver, from a healthy body, to bring restoration to Sarah's body. There are no words that can express what we feel for each of you who have been willing to do so. God has truly blessed us with the most wonderful friends and family in Christ. It's just not possible for anyone to be shown more love than all of you have shown to us - from what may be viewed as "small" things up to offering a liver. We have truly rested in your love and upon your prayers. The hand of the Lord has upheld us because of your faithfulness and His grace & mercy.

We love you,

Kirk and Patty

The Patient

Sir, May I Have Another? or Good Gravy! Enough Already

OK, gang - just when you thought it was safe AND just when we thought Patty and Sarah would be coming home after THREE weeks at Children's...here is the rest of the story.

Last night Sarah had a 102.6 fever and she still has some fever now. Today was scheduled for her GI scope to do some sclerosis to clear up her esophagal varices. Lo and behold, while the docs are in there looking around they see gastric varices! Patty said the docs come out after 2o minutes and she is thinking, "Great! The varices have reduced and are looking good." But wait - they won't treat esophagal varices when gastric varices are present because of the strain that would put on those in the stomach. Are you still tracking with me?

So, no problem, right, they will just care of the gastric varices and we can go from there. Wrong. Gastric varices are untreatable. Since the danger is great that treating the esophagal varices will create a bleed in the stomach, this doesn't paint a very happy picture. In the event those in the stomach did burst, it would create a potentially life threatening situation for Sarah --- and then she would need a new stomach as well as a liver.

Dr. Horslin relayed all of this information to Patty not long ago. Our best case scenario is a new liver SOON, as this would completely alleviate all the varices concerns, no matter where they are. Patty also asked Dr. Horslin if she could become the donor and he seemed to think it was not out of the question, though Dr. Reyes, the head of the transplant team, seems to believe otherwise. Patty would be looking at a total recovery time as a donor of up to 6 months (that's returning to 100%) although Dr. Horslin stated a lot of moms can get to a functioning stage in about 2 months.

Patty has asked the question of the day on Facebook: "anyone know someone who wants to give a 1/3 of their liver to my baby? "A" blood type or O+?" She is not asking this rhetorically but no matter the donor, whether we know them or not, they would have to have a healthy liver which means no damage from drinking, drugs, etc. and they would have to be up for the 6 week to 6 month recovery time. 

I prefer to contend in prayer that the right liver will come NOW for Sarah via the normal channels. Can you please contend with us in prayer? You have all been so faithful to our family.

Kirk

Another Overnighter for Dad

It was my turn to stay with Sarah last night. Kim stayed Thursday night as part of our new strategy to allow Patty some time at home. This weekend she will get THREE nights in her own bed and more time with the kids. Plus, since Sarah is not feeding very well and is relatively happy most of the time, it is not imperative Patty hang out just to be with her.

Last night was uneventful and Sarah even slept for four hours at one stretch. I know her teeth are really bugging her and she is getting over that cold. I suspect she is also growing but haven't checked her length recently.

One concern is still her weight. Based on the fact she has decreased breastfeeding as well as her refusal to drink a full bottle, TPN is the only thing filling her up at this point. Last night she weighed 14.24 lbs which was down from 14.57 lbs earlier in the day. Our nurse said the doctors rounding at that time (3am) wanted to weigh her again this morning to see if there was any improvement.

Other than that Patty is scheduled for her TPN refresher training on Monday, not Sunday as originally expected. Thanks to that reschedule and our dear friend, Cari, being willing to stay with Sarah tonight, our family will be able to attend Easter church services together and maybe even have a celebratory meal as well.

Happy Easter - Christ has risen. All Glory and Honor be to God!

Another Fever and Some Deliberation

Its getting to be that we almost should expect a fever to pop up every few days. Today, Sarah hit the magical 101 barrier so now she needs to stay a couple more days to insure its nothing serious - same old story.

Patty and I have been deliberating actions to take to minimize the impact of her extended absences on the other kids, particularly Katarina. Our initial solution, at least for this weekend, is for Patty to come back and stay overnight a couple of nights. We have been so blessed with dear friends willing to sacrifice their own time (and sleep!) to stay overnight with Sarah. The reason we have reached this point is that Sarah seems much more adaptable and our absences don't nearly affect her as they do Katarina. Additionally, due to her cold and serious teething she hasn't been feeding regularly.

Please be praying we are able to maintain this regimen and that our children return to their previous states of contentment and that Katarina finds renewed comfort in the security of having her mommy closer at hand.

Some Good News

Patty was able to meet with Clint's surgeon today and things are not nearly as dire as we thought. Clint did have a second blockage but it occurred after the 1st surgery. He is healing slowly and there are pockets of pus that need to be drained. He will definitely need some serious physical therapy following his release. They were taking another CT scan today and determining their plan of action but surgery didn't come up in my talk with Patty.

As for Sarah, while it is looking like we won't get the GI scope on Friday, they are working hard to get a home nurse for us so our family can settle into a routine without being overly distracted by the daily TPN change. Stay tuned.

As always, thanks for your prayers. Please continue to pray for Clint's full recovery and that a liver comes soon for Sarah.

URGENT PRAYER REQUEST FOR CLINT

Patty's dad, Clint, is not doing well. Patty just spoke with her brother, Todd, and he relayed that her mom is really upset. The docs don’t know what the problem is and are baffled that he isn’t improving. They are going to do another CT scan and then are talking a 3rd surgery. PLEASE ask everyone you know to be praying for Clint, his salvation and his return to health.

You can imagine what strain Patty is feeling on top of everything else and it is killing her to not be there for her dad. I can't fathom what her mom is going through right now.

P.S. Being sensitive to Patty's mom, please NO new visitors.

A Hard Day

Patty has asked the docs to reschedule Sarah's GI scope to this week so they don't have to come home and return to Children's again on Monday for an overnight stay. No word yet on whether they can make that happen or not.

Patty will be getting a TPN refresher today or tomorrow but is very frustrated that she is being told to expect Sarah to be on TPN until transplant! Apparently, this is not unusual but still overwhelming. Patty is strung tight because this limits what we can do as a family and how long and where we can leave Sarah if we want to take the other kids out somewhere or, heaven forbid, have a date night ourselves. While we are having other people trained to work the TPN so Patty doesn't have to do that every night, we still have to be cognizant of things that could happen while we are out or in the event she has another bleed.

I know we have to adapt to things in these abnormal times and we can't completely stop the rest of life from happening but if you could be lifting up Patty today and continually in prayer. If you could even give her a call or post something to Facebook for her, that would be great.

Thanks so much
Kirk

Success! Now Let's Hope it Continues

I stayed with Sarah last night and, praise God, she took THREE bottles overnight! They weren't huge amounts of breastmilk but she didn't complain once and inhaled the last two of them. So, the little girl CAN actually take a bottle...but mom just needs to be far away.

Dr. Christie came by here earlier and is hoping to take her off the lasix since her ascites are getting better. He also mentioned how they are looking to get Patty more help at home since Sarah will be on the TPN again for an indeterminate amount of time. If she will take a bottle and we can either mix some formula in with the breastmilk or at least fortify it a bit, she could gain weight in pretty short order. Quicker would be great so we could eliminate the TPN but that is a ways down the road at this point.

Thanks for all of you who have specifically been praying Sarah would take a bottle. Please continue to pray in that area and also that her cold/cough will dissipate quickly. She was hacking a little more this morning than through the night and we pray that health comes quickly for her.

The New Line is In

Sarah has just returned to the room and is sleeping soundly. She looks really good and her vitals are great. Kaitlyn, the night nurse, says we will let her sleep a few before giving her the nightly meds and getting her hooked up to the TPN.

Now we just wait and pray for weight gain, that she has a good night and that I can get some breastmilk in her tonight via the bottle.

I get to meet with Dr. Reyes, the head of the transplant team, tomorrow morning at 11am and am looking forward to that. Patty has gotten to know ALL of the doctors here but I have only met a few.

Praying Patty has a wonderful night at home with the kiddos and that they all sleep well.

The Line Goes Back In

I will update in more detail later but we have confirmed the broviac line will be re-inserted this afternoon. It is imperative Sarah put on some weight and the TPN greatly helps in this regard. She has lost almost a pound the last few days and since she is still refusing a bottle, it is making things difficult.

Hopefully, Patty will be able to come home tonight and sleep in her own bed and spend time with our other kids. I will take the night shift at Children's. Please pray I can get Sarah to take the bottle!

The Rollercoaster Ride Continues

Patty said Sarah is losing weight and some of the docs are concerned enough to consider reinserting the broviac tube before they leave. Ach!  She will know more tomorrow but Sarah is not nursing well - and Patty's stress is causing a loss of breastmilk - and is spitting up the rice cereal Patty has been trying to feed her. If she doesn't start taking a bottle there looks to be no alternative but go back on the TPN. We were rejoicing so much earlier in the week about not having to come home with that so it is a real downer. Gagging on the food is a concern because we don't want the varices stirred up again.

Please pray for a miracle that Sarah begins taking a bottle --- NOW!---so that we can add some formula to help fatten her up a little. The GI scope is still on for the 13th. If they stay until Sunday, I will trade places one night with Patty so she can come home and stay overnight with our other kiddos. We are at the 10 day point of this stay. Ugh. Also be praying for Patty that she may have peace that passes understanding regarding her milk supply, Sarah and her dad.

Clint's surgery went well but we need continued prayer for healing and rest. He looked simply exhausted today and he has been there three weeks. That would wear anyone out and he had stomach surgery! 

God bless you, faithful friends!

Kirk

PELD Score, IV and Patty's dad

Good news on the transplant front: the transplant team's request to raise Sarah's PELD score was accepted. She now stands at 15 which is mid-range and will allow a little more promise in terms of gaining a new liver. We continue to wait on God's timing.

Also, Patty just told me no IV will be needed as Sarah's fever has dissipated. They had been talking about putting an IV in her HEAD because all the other veins were basically shot. You can be praying that they don't need another IV at all before their departure Friday morning.

One final note: Patty's dad, Clint, has been in the hospital several weeks now for a stomach blockage. Last night he had his second surgery and is in a great deal of pain. Please pray for healing and reduction of pain. He also has had low blood pressure so we need to ask God to normalize that. And if any of you can take the time to go sit with him and visit during the day, it would be greatly appreciated. He gets very lonely and Patty's mom can't be there all day. Just say you are friends of ours. Thanks!

God bless,

Kirk

Those Pesky Bacteria

Spoke with Patty at 9pm and Sarah had a 101.8 temp and the docs still don't know what's up. Patty sounded hopeful that tomorrow would bring further details on the source of the infection. Hopefully we will also find out if Sarah has moved up on the transplant list.

Many of you are probably experts by now on all this liver stuff but for those who aren't, here is the scoop: while the numbers from Sarah's liver are "good" in terms of bile flow, it presents other issues. With freely flowing bile ANY bacteria roaming in the intestinal tract can cause a potential infection since the liver is directly attached to it. This is one of the "side effects" so to speak of the Kasai surgery. Infections are the primary concern the first year following Kasai so none of this is surprising, just frustrating. 

Until they nail down what the infection is, the girls are now in isolation at Children's. There is also no timetable on their return home although we hope to get Patty up to see the kids at some point, and hopefully stay overnight. Sarah just has to cooperate by willingly taking a bottle...and actually drinking the breastmilk!

An Up and Down Day

UP: Learning that Sarah can come home without the TPN routine for at least two weeks.

DOWN: Learning she has a 102.3 temp.

UP: Dr. Reyes says the transplant team should try to get her PELD score raised so she could be more "competitive" in acquiring a liver. This would put her at 13, more in the mid-range for scores.

DOWN: Sarah's IV was compromised. She not only had to have more blood drawn to see if there is a new infection or determine what is causing her fever, but also had to have a new IV hooked up.

DOWN: Sarah and Patty's return home could be delayed due to the latest fever. 

FANTASTIC NEWS - NO TPN!

Just spoke with Patty and the docs have decided to give us TWO WEEKS to try to get Sarah to gain weight via bottle feeding (with protein formula added), baby food and baby cereal mixed with breastmilk. We can go to our local pediatrician to have her weighed regularly. This will allow us to go TPN-free until at least the next GI Scope on April 13. At that time, if everything has gone well, we may not need to go back on the TPN at all! Thanks for your continued prayers in advance. God is definitely listening and providing this wonderful blessing to our family.

Kirk

Weight and TPN

OK, folks, here is the deal - Sarah lost some weight today which means unless she starts breastfeeding better and maybe consumes some baby food to gain weight in the next 24 hours, we will have to keep her on TPN when she comes home. That will mean either another broviac line (ach!) or and NG tube. Neither of those is particularly any fun for us. So we really need prayers ramped up through Saturday night and all day Sunday!

Plus, Arianna has Stanford Achievement testing all week so if you could please pray for good rest for her each night and that she would be able to perform her best on those tests. She did well on all the practice tests. Math is by far the subject she is having the most difficulty with right now.

Blessings to you all.

Kirk

To TPN or not TPN, that IS the question!

Patty sounded extremely hopeful today. Dr. Horslin told her they would monitor Sarah's weight the next few days and if she gained a little more weight breastfeeding and with some normal baby food, we wouldn't have to hook up the TPN at home again! So pray away, dear ones. This would be a major blessing for all of us.

As for our ladies' arrival back home, it looks like they will be at Children's until Tuesday, but of course, that is always subject to change.

A Little Staph

The docs confirmed yesterday that there was a staph infection caused by the broviac line, either by it leaking or by staph somehow finding its way onto the line and into Sarah's chest. So they have removed the line and will see how it goes for a day or two. Sarah looked very happy when I was there Wednesday evening and both she and Patty are excited to have no line and extra tubes to deal with for a short time. Woo Hoo!

Right now it looks as if they would be returning this weekend; however, if an antibiotic regimen is required, their stay will be a bit longer.

Early Morning update

I just spoke with Patty and they suspect the infection is in Sarah's broviac line. They are considering removing it and will decide whether or not to reinsert once they have the infection under control. If that's not the cause, we should know more later today when some more of the cultures come back. They took a couple of x-rays last night and checked on Sarah pretty frequently to make sure everything was alright so not much sleep for either of our girls.

The broviac was inserted to get nutrients into Sarah's bloodstream faster and to help bulk her up a bit in prep for the transplant. If they decide she is putting on enough weight with just breastfeeding then we may not need the line. Please pray for the infection to be clearly identified today and that the doctors proceed wisely. Since this line goes straight to her heart, we want to insure no infection gets close to it.

Tuesday Evening update

Patty and Sarah are firmly situated back at Children's as of about 1:30 this afternoon. We are awaiting the results of blood cultures to see exactly what type of infection is causing problems. So far they have eliminated the rotavirus and C-DIFF for those of you familiar with such lingo. Apparently those are highly contagious so that is a good thing.

Adding to the problems are an apparent issue with the line they have in Sarah's chest. They don't know if it is leaking or is kinked. They took x-rays and are now viewing those to see what they need to do: try to fix the line as it is or put in a completely new one.

We may not know the whole story on the infection until Thursday so we are expecting at least a two night stay at this point. The other major issue is that if they need to keep her on antibiotics they have already let Patty know she would need to complete those at home! In addtion to the TPN and Lipids - yeah right! The antibiotic would add another few HOURS to the process as they need to be changed over every eight hours. Patty is just not up for this. She is already lamenting the lost time with our three other kiddos due to her ultra-focus on Sarah and the TPN IV. She has pretty much said in no uncertain terms that she would rather stay at Children's to complete the antibiotics than go home and have yet more stress to deal with. 

Please amp up your prayers and thanks! We need a boatload of peace right now and something certain that Sarah is not having additional internal issues as Patty said she has been very fussy all afternoon and she has hardly slept a wink. I will update more tomorrow as I am able.

Back to Children's with Another Infection

Patty called me just after 8am to tell me a nurse called to confirm the blood cultures from yesterday show Sarah has another infection. Patty has already headed down there for another (hopefully, brief) stay. I will write more as we discover more information. Still hoping to have our pre-transplant meeting with Dr. Healey this afternoon.

Up and Down Night

Sarah had up and down fevers all night Sunday. Our transplant nurse, Marsha, advised we take her to the home care site in Bothell to get some cultures to make sure nothing is up so Patty went down about 9am. We also need them to change the dressing on her broviac line as it keeps getting pulled and we need to have it clean and secured a little better.

Please keep us in your prayers today. If anything requires us going to Children's before tomorrows scheduled appointments, I will post again.

Fundraising

Well, I said we would be revisiting this subject and I figured this was a good time. While we do have a pretty good insurance plan, since it will cost at least about $500k for the transplant, we are looking at ways we can raise money to pay for transplant-related expenses, which can include things that occur well after the actual transplant. Plus, if it were to occur in the next month and a half, I would have to be off work unpaid. The social worker at Children's actually asked us to consider this as expenses can mount pretty quickly and unexpectedly.

I want to ask those of you who are interested in either giving or potentially being part of a fundraising team to check out www.cota.org. This is the group we are considering using to facilitate fundraising. You can either email me your personal response, call me, or make a comment here. 

We know God is in control and is our Provider but we want to explore all the vehicles He has made available so we are prepared. Thanks so much for your continued love and support.

Caleb

Our little man in an ocean of girls just turned 5 last month. Its difficult to believe he is growing up so fast. Caleb is a special little boy and is very sensitive. This entire adventure has certainly affected him but its hard to tell how much. He still hides from me and he has a tremendous sense of humor. He is a funny little guy. He loves his baby sister and his special man time with daddy, which has been hard to get these days. He has been deemed ready to kindergarten and we are looking forward to him having the chance to excel in school next year. And he is most definitely a BOY and different in so many ways from his sister. We are blessed to have him in our lives, as we are by all our children. God has been most gracious to us.

A Blood Draw

Sarah had blood drawn today in order for her to be officially listed. Good news is that she has put on some weight, no doubt due to the TPN IV's she is hooked to 24/7. She is at 14 lbs., 2 oz. On the other side, her PELD score (which determines the urgency of a transplant) actually DROPPED from 9 to -2.  A high PELD score is 30 and the average is 15. Don't know what that all means for her except at least for now the need for a liver is not urgent. I have to ask the transplant nurse coordinator about the whole determination of the score. It doesn't mean the varices are gone but that the liver is at least processing to some degree. We still could be at risk for more blood episodes. I still would personally like a liver sooner than later but God's timing is perfect and we continue to stand on His faithfulness.

Next Tuesday Patty will head to Children's for regular transplant appointments and will meet with Dr. Healey during that visit. Sarah will have more blood drawn that morning. If all looks well, she won't head back down until April 6 when another GI scope is scheduled. That should give us an idea of how her varices are doing.

Patty is doing well with the TPN change out every evening. Tonight she did the setup and swap on her own without any questions for home care. Praise God! Please keep praying she gets more confident each evening and that God provides the peace necessary. This stuff is not for the faint of heart, let me tell you.

This weekend I hope to post something about Caleb and Katarina. 

Arianna

I know the focus has been on Sarah for obvious reasons but we have three other children who are the joy of our hearts. Our oldest, Arianna, turns 7 in May. For those of you who have had the pleasure to meet her, you know what a gem she is. Today, she was awarded the Citizen of the Week in her first grade class, specifically because she has shown joy and faith through our family's trials. She is trying to do so well at school and despite the distractions at home, is being a shining example by having the joy of the Lord in her heart. We are so proud of her! God is blessing our family in amazing ways including through Arianna.

GOOD NEWS: Moving Past the Insurance Hurdle

I wanted to update everyone quickly

Ok, so we finally have approval from our insurance for the transplant and TPN. So…tomorrow Patty will head to Children’s in the afternoon and have all Sarah’s blood work taken. After that we REALLY will be in wait mode for a new liver! According to the transplant team, Sarah is the youngest child on the list with type ‘A’ blood so they are fairly confident a match will service fairly quickly. Of course who knows what they consider “fairly quickly”!

This means we could receive a call in the middle of the night anytime after tomorrow afternoon.

Complications of Biliary Atresia

Digressing for a moment, let's look at why biliary atresia can be such a pain - and ultimately lead to where we are today: on the brink of a transplant. We have experienced several of these leading to our multiple hospital visits but none as scary as the varices.


Cholangitis - An inflammation of the bile ducts caused by bacteria moving up from the bowel. This is a common problem after the Kasai procedure, because bacteria are present in the loop of the intestine used to drain the bile. Symptoms include irritability, fever, increased jaundice and poor appetite. Medical treatment should be sought immediately to treat the infection and prevent further liver damage. Cholangitis is treated with IV antibiotics in hospital.

Failure to Thrive - Lack of bile salts in the intestine, which are needed for fat digestion, result in poor growth and fat-soluble vitamin deficiency. Vitamins A, D, E and K can be given orally to prevent deficiencies of these vitamins. Special infant formulas are usually needed to help with growth.

Cirrhosis - is when scarring to the liver occurs causing irreversible damage. Once cirrhosis develops the functions of the liver start to be interrupted and liver transplantation is considered.
Portal Hypertension - As the liver becomes scarred, veins travelling through the liver become constricted. This impairs the flow of blood and increases the pressure in these veins, specifically in the portal vein (a major vein of the liver system) leading to a big spleen and fluid problems (such as ascites).

Ascites - Ascites is a complication of portal hypertension. This occurs when there is a build up of fluid in the space between the lining of the abdominal wall and the lining of the organs.

Varices - Another complication of portal hypertension is varices. Varices occur when the increased pressure causes blood to flow through smaller veins, which leads them to weaken and swell. Varices can lead to bleeding. This bleeding can cause dark or black-coloured stools and blood-stained vomit. Immediate medical attention is necessary.