Sheriff Sarah

Sheriff Sarah

Wednesday, April 29, 2009


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, April 28, 2009

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, April 27, 2009

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, April 26, 2009

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.

Saturday, April 25, 2009

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)

Friday, April 24, 2009

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!


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.

Thursday, April 23, 2009

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.

Wednesday, April 22, 2009

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,

Tuesday, April 21, 2009

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!


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.

Monday, April 20, 2009

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.


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.

Sunday, April 19, 2009

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.


Thursday, April 16, 2009

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.

Wednesday, April 15, 2009

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

Monday, April 13, 2009

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' 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.


Saturday, April 11, 2009

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!

Wednesday, April 8, 2009

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.

Tuesday, April 7, 2009

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.

Monday, April 6, 2009


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

Saturday, April 4, 2009

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.

Friday, April 3, 2009

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!

Thursday, April 2, 2009

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!


Wednesday, April 1, 2009

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,