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