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.

Not the Day We Expected...More Waiting

The transplant team met today and scored Sarah a 9 on the PELD. That is on the low end (high being 30) in terms of necessity for a transplant; however, they did tell Patty that Sarah is the smallest child with type 'A' blood and that should bode well for acquiring a liver fairly quickly. Unfortunately, my new insurance has to lend their approval to the process which may take until Thursday. DSHS won't approve on their end (even though they are currently Sarah's primary insurance) until mine does. So...we wait. Once we have insurance approval, Patty will take Sarah in for blood tests and at that time she could be upgraded to a more urgent case. 

The home care nurse was on hand this afternoon to go over the entire daily changeover with Patty. Pretty grueling but Patty is awesome with this kind of stuff. She is really focused, no matter the level of her sleep deprivation. The good thing is we only have to change the dressing on her chest once a week and the home care nurse will be on hand for that. Please continue your prayers for our daily regimen, including the meds Patty needs to be giving Sarah. 

Next Tuesday, she basically has all day medical appointments. Here's praying Sarah gets on the list (FINALLY) by this Thursday and that a liver becomes available very soon.

Another topic to broach will be ongoing medical expenses, not only during and immediately after transplant but for the future. We are strongly considering creating a fund or account where people can contribute financially towards medical payments and other expenses. We will cover this topic further in a future post.

Thanks for your continued prayers and for stepping up in so many ways to care for, serve and love on our family!

Today is the Big Day

First, the great news is that Patty and Sarah arrived back home last night around 8pm. It is such a joy to have them back and it was cute to watch Sarah. She was looking all around the room and smiling - just happy to finally be home!

In a few hours we should know Sarah's PELD score (visit www.unos.org for more info) and what the transplant team thinks regarding the urgency of acquiring a new liver. As soon as I have that info, I will pass it along.

Please keep Patty, Sarah and our home in your prayers. Sarah is hooked up to a couple of portable devices that are providing lipids and other nutrition. Additionally, Patty has a LOT of meds and supplies to manage. Fortunately, she only needs to swap out fluids once a day.

Another Day

Unfortunately, we are still waiting for our two lovely ladies to return from Children's. Patty has to have two days of home care training before returning home and didn't have the first one until today. She will have the second one tomorrow around 1:30 and if she and the home care person feel confident, Sarah and her mommy will then return home.

Please bear in the mind the line they put in Sarah afternoon is in her chest with a direct path to her heart for maximum effect so this is nothing to mess around with. Please keep her and Patty in your prayers. The other three amigos and me are doing well but they are certainly ready to have their mommy and baby sister home again.

Please keep Patty's dad, Clint, in your prayers as well. He had to go to Providence Colby yesterday due to a knot in his intestines. They are emptying his stomach now (fun times!) and hopefully that will relieve the pressure. If not, they will have to do surgery.

A Lot of Information

Okay, racing fans - strap yourselves in for information overload!

Forgive me if I overlook something. I am sure we will revisit it in a future post. First and foremost, Sarah will be having a minor surgical procedure Friday afternoon to put a central line (or brouvac) into her chest. This will make it easier to get nutrition to her. They have had to add a daily regimen of lipids and other extra nutrition in order to beef her up a bit. We will have to carry a little "backpack" with us for the time being. The excitement never ends.

Second, Patty is undergoing training tomorrow to be able to swap out the IV's and maintain the nutrition supplements as long as is necessary. We don't know how long that will be at this point. Patty told me this evening that a nurse will visit our home Sunday to make sure everything is set up okay and that we have a grip on things.

Next up is all the material we covered on Monday and Wednesday in our meetings with the transplant nurse coordinator and Dr. Horslin. We are experiencing some serious information overload at this point but I would rather have that than some vague notion of what is possibly going to transpire.

This coming Monday the entire transplant team will meet and Sarah's status and place on the transplant list will be determined. Any time after this we could possibly receive "the call" that a suitable liver has been found. The hospital must respond within one hour of receiving their call, so we must have all phones on all the time! Just because a liver is found doesn't necessarily mean we will have to rush off immediately for Children's but would likely do so within a couple of hours. We reconfirmed with Marsha on Wednesday about the likelihood of last minute disappointment and she said the only way a transplant would be nixed with short notice would be if there were structural defects in the prospective liver. So, we are quickly moving into "wait and see" mode. It could be as short as a few days to months to wait for the liver. Dr. Reyes, the lead surgeon, seems to think it would happen pretty quickly only because the number of little ones on the waiting list is very small.

The biggest hurdles lying ahead are post-transplant. This team has performed many transplants and are not at all concerned with that aspect. We still need to be praying against infection during and immediately following the surgery - okay, let's be serious, we need to praying CONTINUALLY against infection for Sarah's entire life - since her immune system will be compromised once the anti-rejection drugs are started. This leaves her more open to colds, infections, high blood pressure, high cholestoral and even cancer. For the first 3 months, she won't be able to be around any other kids but our own, and anyone who remotely suspects they are sick or carrying something will have to tread softly. This itself causes some potential angst and frustration so continued prayers in that area are appreciated.

There is a lot more info out there but I will stop there for now. I am happy to go into more detail and likely will the closer we get to transplant time, and even during and immediately following. I want everyone to know how to pray and to be as informed as possible. The Seattle Childrens website has some info regarding the whole transplant process, though not in as great of detail.

As always, we are blessed to have you all standing with us in prayer and are grateful for your continued support, sacrifices and love & care.

Kirk

In Meeting Mode and a Longer Stay

Briefly, we met with the transplant nurse coordinator, Marsha, yesterday afternoon to review the material in the educational binder we received. We followed this up with an extended talk from Dr. Horslin regarding what lies ahead and potential hurdles following transplant. At this point I think we are fairly encouraged, predominantly because the entire process seems so transparent. There will be no surprises as the transplant team continues to fully disclose all the possibilities of roads to be traveled. We are grateful to have Sarah in their care. We know the Great Physician is guiding their steps because of all your prayers!

Right now, it appears Patty and Sarah won't return home until this weekend. Patty was notified today that they want to try establishing a central line for IV before they depart. This is specifically so Patty can administer home meds necessary to increase nutrition in Sarah's body and beef her up a little.

More tomorrow following the second installment of our meetings with the transplant team.

Sarah

Here are some photos of Sarah from last Thursday and this Sunday with me and her siblings visiting.  You could tell she was happy to see us all. A beautiful thing.

Kirk

Weekend Update

I just returned from visiting Patty and Sarah at Children's. I took Arianna, Caleb and Katarina since they haven't seen mommy since Tuesday morning. We were able to each lunch together and it allowed Patty to catch me up on some things related to the transplant.

Dr. Murray happened to stop by while we were there and will be working to reduce Sarah's distended tummy as she has bloated a bit again from retaining all the fluids - including the loose blood. 

The pic was inserted on the first try Friday - praise God - and Sarah seems to be doing pretty good. Her personality seems to be normal and Patty has been able to attempt breastfeeding again. At this point, we are still looking at another GI scope Monday or Tuesday to see how her esophagus is looking.

We are meeting with the transplant team coordinator Monday and Wednesday afternoon to go over the material (I am now reading it) and procedures. Patty already had the good fortune to meet the head transplant doctor, Dr. Reyes, and was impressed with him much as we have been impressed with the rest of the staff. He made it clear his primary concern is Sarah and what is best for her.

On Tap for the Weekend

They were unable to schedule the insertion of the pic today so it will take place some time Friday. Sarah will be under anesthesia so pray she does okay with that and stabilizes soon after the procedure. 

Sarah was officially listed on the transplant list today and we coordinating all the specifics for insurance between DSHS and my new insurance to assure no lapse in coverage when the time comes for transplant.

She is slowly being weaned off the octreotide which prevents blood from entering her liver and intestines. This will allow her body to not become dependent on the medication.

As of this writing, Sarah will NOT be listed as critical so she goes in line behind everyone else on the list. As we find out more information about this "list" and all the processes that go with seeking a transplant, we will pass them along.

I hope to post some photos of Sarah over the weekend for those that haven't visited.

Another Day

A couple of things as we continue to move through the haze of realizing our baby will need a liver transplant. First, the central line they attempted to hook up to her groin area the other day did not work. Apparently, she had some interesting vein structure in there that may be due to compensating for her liver issues. Today, they are going to try another pic in her arm/chest to get a better IV feed. Naturally, as they were trying to take blood this morning, a vein blew. This has been a common scenario with Sarah. We need prayer this will stop happening and when they go to try the pic, that it works and is set in perfectly the FIRST TIME!

Next, Patty told me yesterday she expects to be at Children's for a week. We are in the ICU on the 4th floor and visitors are indeed welcome for those of you who can swing it. She has to have her cell turned off in that part of the hospital so to contact her in advance call the Children's switchboard at 206-987-2000 and ask for Sarah Kraft's room. You can also just stop by and surprise her!

Finally, with all this poking and prodding, and artificial instruments and lines that are being attached to or within Sarah, we need to be in vigilant prayer against infection of any kind. I am trying to be as specific as possible for prayer requests even though I know Jesus knows exactly what she needs.

Please be praying for our other kids - Arianna, Caleb and Katarina - as they spend some "quality" time with my folks. May the Lord cascade His love for them over each one when their mother is away and their daddy has to work.

God bless you all,

Kirk

Receiving Expected but Unwelcome News

Sarah had her GI scope this afternoon at about 3:45. It was confirmed that she does have varices. I saw the pictures they took of her esophagus and it is not a pretty picture. As I described in part to others at various times, varices is where the blood backs up to the spleen and up the esophagus due to the inability of the liver to properly allow blood to flow through to the heart. 

The doctors - and this included Dr. Murray and Dr. Healey - in the surgery injected the swollen veins in an effort to get them to constrict to a regular size. Unfortunately, this is only temporary. They will have to another GI on Friday or next Monday and likely do the same thing again. The blood is backing up into the stomach where it irritates Sarah and naturally she hocks it up. 

We say all of that to say Sarah will be added immediately to the transplant list. The only solution is a new, healthy liver. I admit I am still shell-shocked by that realization.

Keep those prayers coming as they are what sustain us. 

Kirk

The Possibility of Varices and GI scheduled

Update from Patty: The GI is scheduled for 1:30pm. They will follow that up with an ultrasound. I have finally found the correct spelling of the word Patty kept mentioning - varices - and I have included the definiation below. If THIS is the cause of her blood loss, then Dr. Murray has already said we would list Sarah on the transplant list as a precautionary. That way we avoid the rush later.

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.

As I learn more, I will update the blog.
Kirk

Heading off to Surgery

I just spoke with Patty and Sarah will be headed off to surgery for her GI scope very shortly. It can take anywhere from one to two hours or so depending on what they find. As soon as I get a post-surgery update, I will post again.

Please continue your prayers and thanks so much for your support!

What's on Tap for Wednesday?

Not much to update you with tonight. When I visited Sarah this evening, she was a little fussy - who wouldn't be? - with all the tubes and IVs back into her again. They are going to hook up a central line, as they call it, into her groin area. This will help with getting things in and out quickly. Of course, this increases the chance of infection so we will need to pray against that.

The GI scan should reveal exactly what the issue is whether an ulcer, a ruptured artery/vein or something else. The docs will need the central line in and Sarah stabilized before they attempt the GI scan. Praying for a restful night for both Sarah and Patty.

So we are back to the waiting game again. My mind conjures up a lot of things that can cause a small child (or adult for that matter) to cough up blood and none of them are good! Our nurse told us tonight that the amount of blood in a baby's body would only fill a soda can. Patty suspects Sarah lost at least half of that at our house. She looked good when I saw her and even was doing some jabbering and laughing before I left.

God please bring answers and your healing touch to Sarah tomorrow.

Sarah's First Helicopter Ride

Our dear one is having another adventure - unfortunately - again. My dad called shortly after 11am to report that paramedics were at our house. Sarah has vomited blood for no apparent reason. The paramedics determined it was urgent enough to helo her to Children's Hospital instead of take their chances on the freeway. I just heard from Patty not long ago.

Sarah lost a lot of blood when she vomited. She will probably need to get some blood at Children’s. Her blood pressure also dropped on the ride down. Patty told me the doctors have to get her stabilized, give her the blood and then they will do a GI scan to determine the issue. It could be an ulcer or (I forget the word) an instance where the blood backs up to the spleen due to the liver being scarred. Blood can’t flow freely through the liver to the heart when damage has been done. This was mentioned during our last visit as a possibility.

Please pray hard for Sarah and for Patty as it looks as if we could be looking at another extended stay. We ask Jesus to fully heal our little sweetheart and to look over the rest of our family.