Saturday June 25, 2016....A Day to remember Jonah King...Stedman NC

Yesterday, June 25th my family traveled to Stedman, NC (right outside of Fayetteville NC) to celebrate the life of Jonah King. On Tuesday June 28th Jonah would have been 21 years old. 
Every year for the past 4 years the King family puts on a Helmet Drive to collect helmets to give to charities in their areas to give away helmets to those who receive bikes, scooters, skateboards, etc.... Ken (Jonah's Dad) donates to a local charity in the area "The Bike Lady" that gives bikes to kids who may not otherwise receive one and Jackie (Jonah's mom) donates to Toys for Tots to show support for the Marine Corp and to get helmets to go with gifts that are collected for distribution.
This year as we loaded the car we were pleased to be taking 30 helmets with us, last year we took 19 helmets....11 more this year! Our family goal is to raise more money or bring more helmets each year that we go. 
Every year that we go it is certainly a blessing to meet more extended family than we have in the 3 years past that we have been attending. This was my first time meeting Jonah's Aunt and Uncle, two cousins and Grandmother. It is always a special moment to get to hug these people for the first time. Ken and Tina hosted this event at their house yesterday and did a wonderful job. 
They had games for the kids (with prizes which they thought was wonderful!), fed us all and of course collected helmets. Ken had donate life bracelets for everyone and donate life lapel pins (which of course if very near and dear my mine and Rays hearts!) he even had gotten a donate life flag for Ray and John (the gentleman who received Jonah's lungs). 
Honestly one of the highlights of the evening was Noah. Noah is the "middle brother"! For the past year Noah (who has the most carefree, loving, easy going free spirit) rode cross country and lived in California for the past year- leaving not long after the helmet event last year at this time.  During his time away Noah wrote a song (well I am sure many but one in particular) called "John, John and Ray". There are two Johns who received organs from Jonah- John from Maine received his lungs and John from NJ received Jonah's heart. 
As I listened to this song of course my eyes filled with tears- the line about Ray was telling Jonah you would be proud to know to know this volunteer firefighter from the Red Oak FD who has your liver. As Noah sang this song I also watched his Dad Ken who's eyes were just filled with tears during the song. Tears of pride and joy I am sure as he watched his son write and preform this song and tears of sadness as this family still daily thinks of and misses a missing piece of their family. As I listened to Noah sing I thought this is how Noah heals from losing his baby brother, by picking up a guitar, singing and writing. Part of how I think I coped with all this was through writing and blogging- telling others about our story/stories. 
It is a bittersweet moment seeing this family each year. You are happy and excited to see them but also feel a sense of sadness as you know someone for them is missing. I can't explain how this family has embraced my family, Ray, John and his wife Lee from Maine and Johnnie D from NJ. As we were leaving last night and I hug them all goodbye I hear things like "I love you and I love you very much" and I fight back the tears trying to be strong. I hug Malachi and Noah goodbye- who are like brothers to Ray and I now- especially Ray- the brothers he never had. I squeeze them both so tight saying "I love you very much"...hoping in some small way they know how grateful I am to Jonah, the brother they miss everyday but also knowing that Jonah too loves them very much and is sending them a hug through Ray and I.
This family has forever changed my families life. We love them very much-Ken, Jackie, Malachi and Noah (and ALL the extended family we have met-Tina, Bernice, Gene and Barb King, Nichole and Steve, Jess and Ashley, etc...etc...etc...) they are extended family that we became forever bonded with 4 years ago when tragedy struck for them but life began again for the Brooks'. 
So as the night ended last night each couple or pair lite a Chinese lantern to send up for Jonah- there were 21 this year because Jonah would have been 21 this year. It is a serene feeling seeing all 21 in the air. 
I love that through all of this, this family is STRONG. This tragedy didn't break them, it's built them up and made them stronger than before. They educate others about the importance of helmet safety, raise awareness, collect and distribute helmets and educate others about the importance of organ, eye and tissue donation. 
So as Noah sang last night that as he misses his brother he thinks about "John, John and Ray"....well Noah there isn't a day that goes by that the Brooks' don't think about Jonah (and Jackie, Ken, Malachi and Noah!) and our eternal gratefulness to him and the plan that God had in place for our two families four years ago. 
God is good, all the time

Jonah King HELMET DRIVE June 25th 2016...we NEED your help!!!

Hey all

As many of you may know the young man who donated the liver to Ray-Jonah King- his family holds a helmet drive each year in Jonah's honor- to raise awareness and provide helmets to kids who receive bikes, skateboards, scooters, etc...helmet safety.

If you would like to donate a helmet/s and or cash/gift card for Ray and I to purchase helmets to take with us we are HAPPY to take a load of donations!

Last year we were able to take 19 helmets with us to donate (5 more than we had the previous year before) We would like to top last years number again- taking more than 19-

Jonahs event will be June 25th to celebrate his life and his legacy he leaves behind to others through his donation. Jonah's date of passing was June 12th and his birthday June 28th so his family each year chooses this weekend to celebrate his life and raise awareness.

So on this date 4 years ago Ray wasn't too long out of surgery and beginning on a new path with a new, young, healthy liver.

If you are unable to help, we ask that you just keep the King family in your thoughts and prayers. June is a hard month for them for many reasons. Pray for their strength, peace in knowing Jonah is happy and smiling down on them daily and for their hearts to be flooded with happiness in place of sadness. Pray that this years helmet drive is even more successful than years past and that they can continue to raise awareness to save others with helmet safety and organ donation.

Thank you friends and family! We will receive donations/cash/gift cards through next Friday June 24th. If you have any questions feel free to call or text Ray or I   Thanks all!

Ray and Janet

**PS Ray continues to heal and do well. He returns for a follow up visit to Duke on June 23rd and will still hopefully be on track to be released to work July 1st. Will keep you updated after next weeks visit.

Wednesdays visit back to Duke for a followup 5-10-16

Ray and I traveled to Duke yesterday for a followup since his release last Friday (a week ago)
He had followup blood work and had his staples removed. The surgeon was very pleased with how his incision was looking and the infection that had occurred after surgery is healing very nicely. He will continue on his at home IV antibiotic for about another week in a half. That has been going well and we are handling the Picc line and administering the antibiotic nightly as "pros" now.
On the 20th Ray will take a picture and email to them to see how it looks since the staples have been removed. If it continues to heal and look better then they will stop antibiotics that week. Otherwise the surgeon released Ray from her care and turned it back over to Rays liver Dr., Dr King. He is able to drive now so he was EXCITED about that!

Dr. Sudan said his total amount of healing time and time out of work from the date of surgery will be 8-12 weeks so it seems he will return to work July 1st.

He will have weekly blood work done here to continue to monitor his liver numbers and his antibiotic levels to make sure he isn't receiving too much or too less of the vancomycin.  A home health care nurse will come each Tuesday to draw his blood and to change his picc line dressing. Once the antibiotic stops, they will pull the Picc line and then he will just have labs done as he did before.

His liver numbers were about the same yesterday- 2 numbers are in the normal range and one is still elevated (Alk Phos). They are hoping that as the duct heals, swelling goes down, once the infection is completely healed and he is off the antibiotic that, that number will go down. We will just continue to pray about that and wait it out.

Ray is feeling better and stronger each day. He looks healthier and more rested this week since being home for a week now. The kids have been so happy to have him home to hug, kiss and say "I love you too" in person!

We continue to thank you all for the support and ask that you continue to pray for healing for Ray and for those liver numbers to continue to stabilize as well as his kidneys to bounce back.

Thank you again friends and family

Ray and Janet

Ray was released from Duke on Friday May 6, 2016

Ray was released from Duke on Friday and Riley and I brought him home! Riley rode with me and surprised her Daddy!

He is happy to be back at his own house, in his own bed, able to rest and be comfortable and sleep "normal hours" not hospital hours!

The kids and of course "Scout" were and are happy to have him home too!

We go back to Duke on Wednesday for a check up with the surgeon, I am sure they will probably remove staples that day as well from surgery.

Ray continues at home with IV antibiotics once a day. We both learned how to hook him up and administer them (which is way easier than I imagined!)It is actually quite cool!
A home heath nurse will come twice a week to change the bandage/dressing on his picc line and to draw blood.

I am sure at our Wednesday visit we will learn more about how much longer he will need to heal, when he can begin driving, etc....

It was a good, low key FEVER free weekend! The quietest we have had in what seems like WEEKS! Somehow Ray even surprised me with getting flowers delivered for Mothers Day and he and the kids cooked me a mothers day breakfast, so those were both unexpected treats!

Thank you all for the cards, texts, emails, words of encouragement, Facebook messages, sharing our post with church groups, members, bible studies to pray for Ray, etc....it has meant the world to us and continues to.

We as that you continue to pray against this infection, healing of this billary duct that was operated on a few weeks ago- that it was successful and for swelling/inflammation of that area to go down and for all numbers- liver and kidney to go BACK down to normal and stay that way. We pray that we are coming down the other side of this mountain now.

Thanks friends!

Ray and Janet

Isaiah 40:4

Every valley shall be lifted up, and every mountain and hill be made low; the uneven ground shall become level, and the rough places a plain.

May 1st....beginning the month BACK at Duke again

Just wanted you all to know that Ray is back at Duke as of last night.

He went to the ER here (Greenville) and then was transported by ambulance to Duke.

He is currently on IV antibiotics AGAIN.

Since returning home last Wednesday his incision has been red, angry, somewhat feverish. When he was released on Wed the doctors were aware and sent him home on antibiotics 3 times a day to prevent any infection.
He has continued to have low grade fevers 99-100 off and on from Wed-Saturday.
On Saturday it became more red, tender to the touch, and swollen/inflamed above the incision.

The ER here felt it was a superficial infection and felt treating it with IV antibiotics would control the infection. They consulted with Duke, who agreed but wanted him there for treatment.

So he made it to Duke about 1:30am and has been on IV antibiotics ever sense.

No fevers today, of course!

He had labs here on Friday- liver numbers were elevated- of course!

The doctors it seems are at a loss. Today they said they will get this infection under control first and then tackle the next issues- reoccurring fevers, liver numbers rising.

The good news was his kidney function was down 1.7- that is a praise and he is getting rid of a lot of this fluid in his abdomen and legs/ankles that he came home with.

We still have a lot of questions for the doctors this week and hope that as tomorrow comes we will know more of what their plan of attack is.

As you can imagine- this is frustrating, exhausting, nerve-wracking, and as Jackson put it last night "this just stinks". I know we just have to keep our chins up, keep praying and stay faithful but I would be a liar if I tell you it isn't easy.

Thanks for the continued prayers and support

Ray and Janet

GREAT report from today 4-26-16

Sorry for the late update today!

He survived without me as I left Duke yesterday afternoon. He is continuing to do his walking "laps" and even showered last night for the first time since surgery!

Rays had a great day and very productive!

Pulled JP drain from stomach (this was from surgery)

Epidural is out

Blood cultures are still negative

Sodium bi-carb level is back to normal

Pulling tube out from biliary duct from surgery and even before (this is what attached to the bile bag)- liver numbers were almost within NORMAL range.

All liver test are almost completely back to normal!

Kidney function is 2.2...down from 2.4 yesterday and 2.9 after surgery.

Liver doctors were VERY pleased this AM during rounds as well as surgical team.

They will round on him tomorrow AM and if things continue to look good this afternoon, over night and with AM labs then there is a real possibility that he will be released tomorrow sometime.

He is READY, tomorrow he will have been at Duke for a week now!

I will update you all tomorrow and hope that it will be with continued good news and that he may be coming home!

Thank you all for the continued prayers, thoughts, texts/emails to Ray to help pass the time since he is there by himself now!

Janet and Ray

Today has been a busy day...but a good day!

Well this has been a busy day, AM so far.

Capped the bile bag so it is draining inside now as it "should" be...tonight's labs and tomorrow AM will be the tell tale sign of what is happening with the "repair".

Sodium bicarb is much better than what it was over a week ago

Liver numbers continue to come down

Kidney function is continuing to come down, it was 2.4 today....was 2.9 on Saturday so its slowly coming down- improvements are improvements. Rays poor kidneys just take a beating during surgeries.

The liver team came by and was very pleased with everything so far. Surgical team didn't come by today they were in a surgery.

Feel recovery will be a minimum of 6 weeks with the big incision they had to make or "remake!" Hospital stay till about Wednesday/Thursday.

They did take the catheter out and the epidural is turned off. Epidural not pulled out yet- his platelets were low yesterday/this AM so they want to wait until they go up so there isn't a bleed.
They had been giving him heparin shots to prevent blood clots after surgery but since he is moving around those have stopped today. So hopefully in the next day or two platelets will come up and then they can pull the epidural.

Was able to eat solid food today- graduated from jello/liquids....to scrambled eggs/bagel!

Slowly but surely things are getting better and better.

I would say overall doctors were pleased today and I see a big improvement in him today.

I am staying until this afternoon and then heading back to Greenville for a few days. A certain 8 year old is REALLY missing her mommy!

Continue to pray for healing of this duct, that liver function/numbers go down, that kidneys continue to bounce back from surgery and kidney function goes down. NO fevers today either so continue to pray against those.

Thanks everyone as always. Ray will be by himself for the next few days- now that he is feeling a little stronger he will appreciate text or emails I am sure to help pass the time!
252-347-1449

Ray and Janet

Turning a corner today we hope!

Today has been a bit better- not so tired, not so sluggish, not feeling as poor as he did yesterday.

Still fevers off and on- low grade. Did chest xray to double check it wasn't anything with that- it was negative. Blood cultures are negative as well.

Will broaden antibiotics for fever

Dr. Sudan feels the fevers may just be from bile duct obstruction- that is was maneuvered and messed with in surgery.

Epidural will hopefully come out tomorrow pain team said. Once eating real food then it would come out. Once bowels are waking up.

No dehydration today- He's had a lot of output today-so that is much better than yesterday.

Able to drink and have fluids today- so had some jello, some gatorade, water and a little broth.

Kidney function- down to 2.7 today...from 2.9 yesterday....slow progress but progress none the less.

Liver numbers are looking good.

Catheter will come out with epidural comes out- again the hope tomorrow.

Next hurdle- will be bowel action- that is beginning late this afternoon- so that is a good sign.

We are hoping for good reports tomorrow AM from the teams- catheter out, epidural out, everything inside waking up. Hope in next few days to cap bile bag and pull JP drain in his stomach from surgery- those will be next big milestones. Maybe by mid to end week he will be discharged- next few days will tell a lot. 

Thanks again everyone

Ray and Janet

Update on 4/23/16

Hey all, not much of an update today

Very RESTLESS night for Ray last night.

Pain has been under control today but he is still connected to epidural pump with main meds going in intermittently....probably till tomorrow...that should come out.

He did walk this AM with me, about 5 laps around the floor.

Pretty dehydrated today, like A LOT, blew both IVs had to get new ones and then got a bolis of fluid. Creatine (kidney function) is up to like 3.9...it was 2.0 before surgery so that is concerning to me but Rays kidneys have trouble bouncing right back.

Small low grade fevers off and on- one last night, one today.

Really had a rough day from about 12-evening.

Able to drink small sips of water today.

NG tube- nose tube out this AM, he was VERY happy about that.

Bowels are beginning to awaken...and tonight he is starting to feel hungry...so those are good signs. But his stomach is feeling extended and full....just needs to get it out!

We are praying that tomorrow is a better day. I hope that he will have a bit more energy tomorrow. Praying that fevers subside (he is on IV antibiotics), praying that he just makes more gains tomorrow. I am staying now for sure until Monday because I wasn't really pleased with how he bounced back today, or lack there of.

So he still is in need of your prayers for healing. Hoping tomorrow is just a NEW better day.

Thank you as always to ALL of you all.

Ray and Janet

Done with Surgery! It was a success!

Ray is all done! Surgery was from 12:15-4:00, finishing up in OR now. Will be able to see him in recovery now in about 30-45 min.

Dr. Sudan, who did his 2nd transplant actually ended up doing the surgery today. An OR came open, Dr. Knechtle was in another surgery and couldn't get to Ray until the afternoon so he let Dr. Sudan just go ahead and begin. By the time he went in to check in/help out she was close to being done and that was about 3:00/3:15.

The report from Dr. Sudan was: 

1.  Ray was very stable during surgery

2.  Pretty sticky getting in- with scar tissue/adhesion

3.  Visually looking at the liver- what they could see of it- looked great, rock solid in how it should look, where it was, etc....although there was scar tissue already cob webbing around it (not an issue but just what his body does)

4.  Cut out a pretty long stricture- it was very thickened and scarred...about 3/4" scarred- very thick, very inflamed. So now that she had seen it with her own eyes she could understand why ballooning it wasn't do anything...it was just too dense and thich and inflamed and she was sure it probably just went right back down to how it was after ballooning.

4.  In 90+% of cases this is a correction and it is fixed- outcome beyond this is good.

5.  Was left with a good size duct, feels good about what was left.

Waiting to see Ray now and then move forward the next few days. Just please continue to think of him and pray for him. Little pain, quick healing, quick recovery. The quicker he can tolerate pain, get his bowels/insides moving, up and moving the quicker he can come home, possibly by mid week.

Thank you again for all the text, calls, emails, FB messages and especially the prayers. Keep the coming. I especially ask that you pray for Rays kidneys which typically take the brunt during surgery and were already bearing a brunt before this. Pray they bounce back quickly. Pray his liver numbers bounce back quickly and we can ALL return home together soon...healthy!

Janet

Update on Ray- Surgery scheduled for tomorrow approximately 2:00

Surgery is scheduled for approximately 2:00-2:30....that time could move up slightly or back slightly depending on the day. Surgery could last anywhere from 3-6 hours. Normally time would be 3-4, if there is a lot of scar tissue to get through could run longer.

Basically over time the two ducts that were sewn together have formed a high grade stricture. Scar tissue where the two ducts were sewn together. The balloon procedure that was done earlier just wasn't strong enough to stretch that scar tissue and make it "stay" where they wanted it.

There is a fear about stretching the scar tissue too much because then you could tear it.

This duct has to now be surgically fixed the team feels is the best and only option. The surgeon with dissect the stricture cut out piece that is narrowed and reattach.

They will leave the "tube" in place so that while this new area of the duct is healing it is helped to stay open by the tube and scar tissue will not constrict it or the healing.

In 6 weeks the IR (Radiologist team) will do another evaluation of the area before pulling the tube to make sure they like the way everything looks.

The surgeon estimates that Ray will be out of work for 1-2 months.

I did ask the question...is this repair a fix or temporary that this would have to happen again....he said NO this should most definitely be a fix. Typically a fix is a fix.

Dr. Knechtle (like K-nect-ly) met with Ray early this AM and then came back and met with me this afternoon. He answered all my questions. He was recruited here by Duke. He was in Wisconsin for some time and then Emory University. He specializes in bile duct strictures and repairs. He isn't afraid of hard cases and typically is called in for hard cases. He is well aware of how hard Rays last transplant was and all the scar tissues/adhesions there were once they got a look inside.

He will be leaving for vacation after Rays surgery so he will also call in another surgeon- possibly Dr. Sudan or Dr. Ravindra (from 2nd transplant) to be on board and know the ends and outs of the case and surgery for while he is gone.

The anesthesiologist also came by, talked with us, and signed paper work for that tomorrow.

I will say Dr. Knechtle came over to where I was sitting after all my questions, grabbed me by the hand, looked me in the eyes and said " I am going to take care of your husband. I know you love him, I know he is important to you, I know you are scared. I love him because he is my patient. You worry about taking care of yourself tomorrow and let me worry about him. I am VERY good at what I do. I will work and do my very best, I am VERY good at what I do. And while I am working I will be praying to God for him and for me to work."

Of course at that time the tears were just flowing down my face. I told him thank you that meant a lot to me in many ways and that I too would be praying for him.

So you know I love to send SPECIFIC prayer request so here they are:

1.  Pray for the surgery to go smoothly, to find the duct and repair it as it needs to be

2.  Pray for little to NO scar tissue to block the view!

3. Pray that Rays kidneys can tolerate this surgery and bounce back quickly- they have been working overtime the last few weeks already

4. Pray for wisdom and discernment for Dr. Knechtle, pray that where is weak or needs your help father that you step in and guide him- thanking God that he is a godly man performing this surgery

5. Pray for little pain for Ray afterwards

6.  Pray for peace, comfort,  and that Ray, myself, the kids and both our moms, my dad feel Gods spirit and loving arms wrapped around us all during this surgery.

7.  Pray for those friends we have traveling Lord to help support and love on Ray and I.

I will update you all when surgery begins and after. Thank you all for praying, sharing this with others to pray, sending Ray text and emails, calling to pray with us over the phone, it just has gone on and on and it reminds us again that no one CAN or SHOULD go through anything like this on their own. We are truly lucky and blessed to have such people in our lives. Rays email: raybrooks@gmail.com, 252-347-1449

Thanks everyone,

Ray and Janet

Update for 4-20-16...Possible Surgery Friday

Hey all, so here is the latest after talking with Duke yesterday afternoon.

Ray will go to Duke today and be admitted to prep for surgery that should be Friday.

His kidney function is up, his kidneys are just working hard to keep up since there is a fluid shift in his body with the bile bag, liver numbers, etc....even though he is drinking lots of water and Gatorade his kidneys just can't keep up, along with other numbers just out of whack.

They will prep him, hydrate him and get his body ready for possibly surgery on Friday. I feel like we should know more definite answers tomorrow.

Right now he is still at home, waiting for duke to call and let him know they have a room ready for him.

I will go down with him at some point before surgery, probably Thursday night and stay through Sunday.

This will be a major surgery. They will go in from his previous incision and actually repair the duct itself. Not a stint, not laparoscopic but go in there.

Estimation he will be in the hospital a week.

Of course this is scary to me because the last time I say in the surgical waiting room for 18 hours, it was scary, unknown and Ray almost didn't make it through that surgery because of all the complications with his body making so much scar tissue.

Two of the surgeons that operated on him last time were in the conference yesterday about his case. They said these were different circumstances, Ray wasn't psychically sick like he was last time and his liver is strong and healthy now.  All of these things I know...it is the fear of the unknown or potentially WHAT could be in there once they open him back up.

At this point this is what they feel is best so we will trust in their knowledge. This has been a long road going on since the fall for sure, so hopefully this is the repair and fix we need to make him better.

Should know more tomorrow of definite details I am sure.

I am sure Ray would love an email, call or text from you guys as he is up there this evening and sitting and waiting around tomorrow getting hydrated and ready!

347-1449 or raybrooks@gmail.com

Thanks prayer friends....we need them more than EVER now!

Ray and Janet

Update from our visit from Duke 4-4-16

April 6, 2016

 

Hey all, we went to Duke Monday 4-4-16 for a follow up appointment. Blood counts were good- so no infection, which is great news since a fever sent Ray to Duke over a week ago. He finished antibiotic yesterday in fact from discharge.

Duke would like to schedule his next procedure for May 9th- he already had an appointment scheduled with Dr. King that day so they are going to try to work with the IR/Radiology team and get an appointment that day to check the billiary duct (blockage) again- possibly replace or take out the tube- depending on what they see that day.

We waited for labs to come back on Monday after our appointment, for about 30-45 min...we decided to stay and wait to check on things before leaving...good thing we did. We then met back with the doctor and coordinator. All of Rays liver numbers were elevated again. Our instructions were to uncap the tube and place the bag back on to drain. Duke wants to leave the bag hooked up for 2 weeks and monitor his lab numbers from here. He is scheduled for labs at least twice a week here to monitor his liver numbers. They are keeping a close eye on his electrolytes and sodium bi-carb numbers since his body isn't getting all the fluid it normally would have since it is draining the bile into the bag. It definitely wasn't the news we were hoping for or expecting Monday. It was a hard pill to swallow to be honest. They have already ballooned the area twice now and a third time could be a possibility, but that is it. After that it could be some sort of surgery to correct the area/stint it. Surgery obviously for Ray would be very dangerous and a last resort. From the previous transplant we know that his body makes a LOT of scar tissue and what could be a minor surgery for some is major for his body due to the scar tissue.

Dukes hope in connecting the bag for the next 2 weeks is to give that area some time to heal and possible swelling to go down in that duct if there is any, since it endured a lot of trauma in a short span of time. The next 2 weeks will tell us a lot.

He will have his first set of labs tomorrow since having the bag back connected, hopefully his liver numbers will be BACK down and his electrolytes and sodium bi-carb will be ok as well. 

We ask for continued prayers for Ray. Specifically for healing of that duct area- either complete healing or that God puts us on the right path to healing it after one more procedure. I pray that at all cost God heals this area and that surgery is avoided. We appreciate and value your continued support and prayers over the coming weeks. This is a process that is for sure! Thanks for the calls, emails and texts- the support means a lot.

 Ray and Janet

SPRUNG from Duke 3-30-16

Quick update on Ray today 3-30-16

Ray has had a stable 24 hours- NO FEVERS! The doctors rounded this AM and said they were pleased with no fevers for a 24 hour period, nothing was growing in the blood cultures still, they will cap off the bile bag today-forcing it to drain inside as it should instead of both inward and outward (and monitor him for 24 hours after doing that), take him off IV antibiotics and switch him to one oral antibiotic (instead of 2-3 IV ones!) and see what happens in the next 24 hour period. 

 So it seems we are on the right track, or actually that Rays body is on the right track. So maybe just 24more hours at Duke and then he can break free! 

His spirits are better today (so thank you for those who may have been specifically praying for that!) 

This is all hard, on all of us....hard for him to be there, not feeling great and be away from us BUT also hard on the 3 of us as well. 

I am reminded and thankful as I think back to this transplant that TRULY this has been the first REAL BIG bump in the road in almost 4 years. That is a blessing for sure, and in 4 years Ray has been cured from Hep C...another blessing. So in the midst of a storm, feeling stressed, tired, ill, etc...I should reminded of those things. 

This is the life of a transplant patient....there will always be ups and downs, always things that can go wrong. While he is cured from the Hep C which constantly attacked his liver, he will always have a chance of something happening, rejection, an obstruction, etc....because for the rest of his life he lives with an organ that is not his. 

We just ask continued prayers for the next 48 hours and really over the next 6-18 weeks of correcting this obstruction and getting through this hurdle, this valley. 

Once Ray is released we will return for a follow up visit on Monday to Duke. 

Thanks everyone-

Ray and Janet

What an Easter...2016...

Update on Ray 3-28-16

Hey everyone just giving you an update on Ray.

Ray had to be admitted yesterday morning due to a fever.....well Happy EASTER!

He will be here until at least Wednesday. 

Duke replaced the tube that he had placed in a week ago and check it’s positioning, etc…as sometimes they shift/move, etc….the tube flow was fine and its placement, however while they were in there they went ahead and replaced it with a slightly bigger one to make the flow faster and ballooned the area the has been blocked again. 

Unfortunately this seems to be par for the course with this type of blockage and procedure. They may have to balloon the area 2-3 times they said before the constriction stays open on its own. So we could be looking at anywhere from 6-18 weeks with this going on and traveling back and forth to Duke. 

We should know more tomorrow once the doctors round in the AM. They want to monitor him for the rest of today, close off the bag tomorrow and then monitor him again to make sure he doesn’t get a fever once that happens so it seems he will go home Wednesday. It is kind of day by day right now. 

They don't seem to know where the fever is coming from right now- since there didn't seem to be an issue with the tube they found this AM. Although a fellow just came in and said that there seems to be a correlation between if any fluid was leaking where it shouldn't be or backing up...so the transplant team isn't ruling out that the fever isn't from a tube issue. The next thing to figure out will be where the fever is coming from and he will continue to have IV antibiotics. They did do blood cultures yesterday and they have to have 48 hours before they have some results from that. 

The next 48 hours will tell a lot. 

Thanks everyone for the continued prayers, thoughts and concern. I am at Duke with Ray until this evening, then heading home. More than likely he will be here tomorrow by himself and then hopefully we can pick him up Wednesday. With it being spring break the kids are home this week and honestly need a little TLC and attention from mommy. I am sure Ray would appreciate calls or text tomorrow to check in with him, although he also needs to just rest, heal and fight this fever/germs off. 

Will update you all when we know more tomorrow. 

Ray and Janet

a Cholangiogram....

On Mar 15, 2016

Hey all, just wanted to update you all that Ray will have a Cholangiogram this upcoming Friday the 18th at Duke at 11:00am. As of right now they will keep him overnight at Duke Friday afternoon/night for monitoring (especially if they put a stint in).

He will be on the transplant floor so that the transplant team and his doctor there can check on him and make rounds on him.

Hopefully it will just be a quick overnight stay and HOPEFULLY if there is a blockage they will find it with this test and are able to fix it.

This will be different than a biopsy bc he will be sedated for this procedure-well consciously sedated....with a biopsy he feels it all!

We just ask that God just reveal to the doctors whatever is wrong and has been wrong and guides them to fix it this time. The not knowing is certainly worse than all this not knowing and spikes in his blood work/liver test.

Just pray for guidance and peace for Ray has he undergoes all this.

Thanks friends,

Janet and Ray

Update 3-9-16...some bumps in the road!

Update on Ray 3-9-2016

 Hey all I know it has been awhile since an update and things with Rays liver have been wacky to say the least. Since last summer 3 of his main liver numbers have been creeping up, not knowing why. In November they made a spike, which sent us to Duke for a liver biospy and ultrasound. In January again another spike- another biopsy and an MRI.

Between the November and January biopsy there were NO CHANGES, in fact the report read "his liver looks great, very healthy, not fatty, does not look like a liver of a man who had two transplants and previously Hep C, no scarring of the liver looks GREAT". So they didn't really know why his numbers had been spiking and decided just to continue to monitor Ray, see him for his May scheduled visit and do blood work ever month to monitor numbers.

In February Ray had bronchitis which sent him to the doctor twice. On the 2nd trip they prescribed him prednisone for 5 days which dramatically LOWERED the numbers that had been elevated- so then Duke felt like maybe they were dealing with a mild rejection. They then prescribed prednisone for several more days to help with the issue.

Last Friday 3-4-16 (after more blood work earlier in the week!) the liver numbers went back up, which then lead them to believe it was NOT a rejection but possibly and infection or blockage and he was to stop the prednisone immediately.

Yesterday we spoke to Duke again and Ray will go next Friday (we are thinking) to have a procedure to inject dye right into his liver to watch it travel to see if there is indeed a blockage that has NOT been seen already by an MRI or liver ultrasound. They will do the procedure in radiology and he will be consciously sedated (like with an endoscopy or colonoscopy...he has no sedation with a liver biopsy so he is excited he wont really know WHAT is going on with this procedure!)

This is the first time he has ever had this done.

If anything is found during the procedure then they will "balloon" the area open and stint it. He will have a "bile/billi" bag for a few weeks they felt like if that occurs (which I could tell didn't thrill Ray when he heard that yesterday!)

He has had several issues over the past couple of months related to liver- tired/fatigued, itching, numbers of course going up on labs, irritable. I know he is frustrated the the doctors cannot tell him what is going on or how to fix it, I am as well. It isn't easy for him as the "sick person" of for me as the one who has to "listen and take care" of him.

At this point we just ask for clarity and healing. Clarity that the Lord can reveal whatever the issue is and has been to the doctors, that he can help guide them with wisdom and knowledge to repair whatever is going on with this precious liver. Wisdom for his new doctor at Duke, Dr. King to figure this out and that if she cannot that God helps her to lead us where we need to be to get Ray back healthy. and peace for Ray as he deals with all of this. Peace and understanding.

I will continue to update you all as we know more in the coming weeks.

Please keep us in your prayers. Thank you faithful friends and prayer warriors!!!

OH on a positive note! I have FINISHED the first rough draft of my book and found and editor to work with in Ohio. In the coming weeks I will send her the first draft of the book to look over and begin editing! That is EXCITING!

Ray and Janet