Transplant!

On Christmas Eve, we received a call from a friend and former co-worker of Jason’s, Randy Wood.

Randy went on to tell us that he was a match! Let me tell you, this was an awesome Christmas present! Jason and I were so excited and cautiously optimistic that this could really happen!!

It means so much to see the outpouring of people who have been willing to be tested to see if they are a match. What blessings in our family and friends the Lord has given us!

Since Christmas, Jason has fully recovered from his catheter surgery. He has started dialysis. Manual dialysis is not quite what we were expecting as it is far from using a cycler. It is very time consuming and I can only imagine the mental toll on Jason involved in sitting down and doing it around the clock.

My heart goes out to those who, for whatever reason, are not transplant candidates or able to be matched. While dialysis is a blessing, it extends your life and keeps you alive, in its various forms- it is taxing. It is emotionally taxing and it is physically taxing. We are so thankful for the Lord’s provision- for both dialysis and for a match in Randy!

With the additional testing and scheduling it will have only taken about 8 weeks to have this surgery come about!

As we get ready for the transplant and our trip to Dallas, Maddie and Jackson have been sick- it seems in constant rotation! Please keep us in your prayers as we get closer and closer to the transplant date. March 3 is the big day! Our family and Randy’s family need to be well- especially Randy and Jason!!!

Organ donation is no small thing. We are so thankful for Randy and, his wife, Kelsey’s willingness to walk down this road with us.

There are many worries that pop up as the big day looms closer. If you have thought of it, so have we- and probably many times over! God is in complete control. He’s got this!

Here is a photo of the family- this was somehow the best version I ended up with- Jason is in mid sentence- but the shirts say it all!

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New Kidney, Big Sister and Big Brother- #4 coming in September!

Recovery

Thank you all for your kind words and prayers!  They have truly been felt.  Jason is recovering very nicely, maybe a tad slower than we had initially expected.  He is in good spirits and is getting all of the quality cuddle time, tv time and recliner time he wants!  Ha!  Maddie is a wonderful help.  She keeps her daddy supplied with a cold drink and is very prompt to bring him whatever he asks for.  Sweet, sweet girl.

I am ever hopeful that the rest of our Christmas Season will go very smoothly.  It is laced with family, fun times with friends and visits to various doctors offices.  Please keep us in your prayers – we are still quite far from the end of this journey.

Much love and Merry Christmas!!

Surgery and The “Big Picture”

Procrastination…putting off impending tasks to a later time, sometimes to the “last minute” before the deadline….

Who isn’t guilty of it… procrastinating…?  Well, I seem to have waited, arguably until the last possible minute to update y’all.  Even as I type this, the minutes seem to have morphed on into another day, Monday… yikes!

We have been overwhelmed by the number of you, sweet friends, that have signed up to be tested for kidney donation.  Words cannot adequately express our appreciation for your willingness.  They are still testing people.  This testing process has been quite testing.  Haha.  It is a slow process and they send kits out in batches of 3-4 at a time. If you have signed up, and are waiting… I feel confident that you are in queue.  If you have any follow up questions, please contact the Living Kidney Donation Coordinator.  She is very nice and very helpful!

The busyness of the holiday season, preparations, travel, festivities and family time I have found myself struggling to push our “big picture” to the back of my mind.  These days, it is a constant struggle.  As these last few months have flown by, we have been watching Jason’s health decline.  Fatigue.  Nausea.  It seems almost one by one we have watched the digits measuring kidney function get smaller and smaller.  Even though it is not evident to many, it is so obvious to me, in our home, that we are where we are.  It is hard to watch someone you love dearly have a decline in their health; as many of you know, all too well.

Tomorrow morning(Monday), Jason will have surgery to put a catheter in place in preparation for dialysis.  Of course, to hear Jason describe it “stab wounds to the gut”…. BLESS him.  For a big, tough guy he is decidedly quite alarmed when it comes to even a flu shot!  You can only imagine the anxiety level at our house right now!  That being said, I am taken back to the “big picture.”

This morning the lesson at church brought up a very dear reminder for me.  If you will allow some paraphrasing, Hebrews 10:23 – “Hold Unswervingly to your hope; he who promises is faithful.”  God is faithful.  Y’all, did you hear that??  GOD is faithful.  GOD IS FAITHFUL!!!!  Do not lose your faith, your hope, stand strong in Him.  Now, it has been 2 years since we were in the hospital with Emma.  This very verse was one of the few that I wrote on my heart.  So timely that on this very day, this day before surgery, God sent me a word.  A reminder that He is faithful. He put this verse, and this lesson on the heart of our teacher this morning.  He knew just what I needed and met me right were I was, today.  In the midst of anxiety and worry about things that are way out of my control, He knew.  God is so faithful.  He loves us so much and cares for every single little detail in our lives, and of our hearts.  This reminder lets me know, again – because sometimes I need at least a little reminder, that He is in complete control.

My prayer continues to be for healing for Jason. I will hold unswervingly to my hope and my faith in Christ for I know that He can do great things!

Let us not give way to our circumstances and lose focus on this season, the “big picture”, and what it truly means!  Christmas can be a time of re-birth. Renewed commitment.  A time of celebration.  New beginnings.  A fresh start.  As we celebrate the birth of a sweet baby, it is so much more than just cheery and sometimes forced get togethers.  It is a time of rejoicing in the birth of our Savior!  He came just so he could die for you and for me!  What great love! I am so grateful for the chance that Christ gave me.  He gave me a fresh start, that through my faith in Him, I am saved by His grace.

What is your “big picture”? I could not do it without Him.  Could not.  Can you?

Jason

A quick update, more to come later!

As many of you know, Jason is now in kidney failure. He needs a transplant. In order to have a transplant, he needs a donor.

We ask that you pray for our family and pray that the Lord will move and provide for us in this very special way.

God is our sustainer and provider.
Without Him, our family could not have endured life’s trials and tribulations. We could ask “why me” types of questions all day long- instead, we are choosing to praise Him all day long!

Here is some information about kidney donation and a link for anyone interested in learning more about donating.

The evaluation process for a donor has multiple levels. I have included a link to a website that can walk you through a preliminary questionnaire. The results of the questionnaire are forwarded to a transplant coordinator. From there it is a simple blood test. Then, once a match has been found, there is a more thorough physical. If you have any additional questions- I am happy to answer them or direct you to someone who can.

http://www.livingdonordallas.org/

Much Love!
Meredith

Celebration Services

Services for our sweet Emma:

Visitation will be from 6:00-8:30pm on Wednesday at Macedonia Baptist Church.

Macedonia Baptist Church
4656 Page Road
Longview, TX

We will also have a graveside service at Greenwood Cemetery in Marshall, TX on Thursday at 11:00.

Haggard Funeral Home in Jefferson, TX is handling all of our arrangements.

day 133

Sunday, February 3, 2013 day 133

I am writing with a heavy heart today. Our sweet Emma Katherine is now playing on the streets of gold with Jesus.

Heaven welcomed Miss Emma early this morning. This past week had been a little different for our sweet girl. Emma had a very high heart rate most of the week. Many tests and medications were tried one after the other. Nothing really had an effect on her little body. Each day brought an ever increasing heart rate. Some things would provide temporary relief but nothing seemed to last. I suspect that her little heart just couldn’t keep up anymore.

I was able to have some precious moments with Emma before Jason could make it. We spent the morning loving on our sweet girl and thanking God for the opportunity to have her in our little family. The Lord has truly blessed us throughout this journey.

Thank you so much for your outpouring of love and encouragement on all of us.

day 116

Thursday, Jan 17, 2013 day 116

Emma’s dialysis has slowed down considerably in the last two days. She has puffed up quickly. Please keep praying for our sweet girl. It has been one battle after another- medical hurdles and battles for her care to remain cohesive and consistent as we get new doctors and as her responsiveness changes.

Thank you for your prayers and support- please keep it up! God is using Emma in a mighty way!!

Much Love!

Life

Tuesday, January 15, 2013 day 114

We have had a lot going on lately. With a handful of visitors here and there and having a few things to sort out with doctors and nurses, I have been busy.

Last week, Emma lost a ton of fluid and her swelling has come down a lot. The idea is once you have been on higher concentrations of dialysate for an extended period of time your peritoneum usually begins to scar up and stop working. Emma has been on the highest concentration for weeks in addition to being on shorter dwell times. We had to move to this combination when she stopped pulling any extra fluid off at all(a sign her peritoneum was failing). For the last ten days, Emma has pulled off so much fluid!! The first several days she was still on the higher concentrations. She came down with a bacterial infection last Tuesday. Emma spiked a fever and acted abnormally maybe for 4 hours and has basically been fine since then. The infection left concerns that Emma could be getting intravascularly dry- her dextrose concentration was lowered.

We were so nervous for them to lower it- what if she didn’t pull any fluid off? We had already gained such ground. Well, after 12 hours they had to step it up a notch but Emma has continued to pull fluid off(even more that usual) inspite of being sick and being on a lower dialysate concentration!!!! She looks great!!! Praise The Lord!! Now in the last 24 hours, she hasn’t moved quite as much fluid so they are tweaking it once again. I am still Praising God!!!

Emma was officially 4 months old on Sunday.

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Shortly after this photo was taken, Emma graduated to a crib! Is it even possible that we have been here long enough for Emma to have outgrown the baby bed??!!!! Oh my!!!!

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She has so much more room now!!!

Maddie has been having a ball! She has been playing dress up, cooking, painting, dancing and singing. She continues to be slightly obsessed with Cinderella. We have also been watching Ratatouille quite a bit. The common theme of the mice in the two movies has given Madison a new awareness for mice. When we go out to eat, she will ‘accidentally’ drop some food on the floor… look at me and say, “the mice will get that!” Oh my!!! I feel so sorry for the people sitting around us. I am sure they are not filled with the warm fuzzies when they hear mice being mentioned as my two year old points to the floor!!

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I have been so encouraged by Emma’s progress!! God is faithful! He has not left us!! Lately, I have had such peace. God’s provision for our little family has been amazing. I am excited to see what He has in store for us next

Great is Thy faithfulness!
Great is Thy faithfulness!

Morning by morning, new mercies I see; All I have needed Thy hand hath provided!

Great is Thy faithfulness! Lord, unto me!!

Keep praying for our little family. We are beyond ready to come home!

Happy New Year!

Tuesday, January 1, 2013, day 100

100 days and 100 nights. We have been at children’s in the ICU for 100 days and tonight makes 100 nights. I have slept in a recliner in an ICU for the past 94 nights. We have been apart as a family for a good part of that time. Maddie has changed so much and is a little girl now instead of my petite toddler. Madison daily exceeds our wildest dreams. She is a treasure. Emma has been through so much. She has had surgeries and procedures done that no one should face. She has done all of her growing in her little hospital bed.

I can’t wait to see what God has planned for our family in 2013. I have so much hope and am looking forward to each day.

Jason has been working a lot lately and he hasn’t been able to visit since Christmas. I am hopeful that he will be able to come visit soon.

Emma and I rang in the New Year together from our penthouse at Children’s. She slept and I watched the wonderful fireworks display in downtown Dallas. Of course, Emma’s room had the best view and all of the nurses piled in to catch a glimpse of the festivities.

Emma continues to limp along on her dialysis. Her iv access in her leg has leaked continuously for weeks. Sometimes it will go 30 hours before needing a dressing change and other times it will only make it an hour and a half. On Friday, most of her meds were moved from her iv to by mouth. Or by feeding tube in our case. Emma had an extra iv put in her left hand so she could still receive heparin to keep her from clotting her other vessels. She is being transitioned to Coumadin, by mouth, to eliminate the need for an iv and heparin. That leaves 2 things going in through the line in her leg – albumin and an anti fungal medication.

The main line in her leg is only working halfway and even then probably not. It had two ports. One of the ports quit working entirely on Friday. And the second one would not draw blood. That started the big push to move as much to by mouth as possible. Emma’s nutrition has also been advanced very quickly over the last several days. The hope is that optimizing her nutrition will enable her liver to produce enough albumin. This would eliminate the need for an iv infusion of albumin. Thankfully, Emma tolerated the influx of medication and feed fortification really well. It seems that we will be able to continue with all of that.

Due to the failure of both ports to draw blood they have adjusted her lab schedule to 2x a week. This is good for her since there is no other way left to draw blood except to stick her very fragile veins in her hands and her feet. However, if there are big swings in her blood levels we will not have a way to know it. This could pose a problem and is risky.

Emma had a culture taken of her dialysis fluid/waste that she drains out. It was positive for fungal growth. A fungal infection would completely stop us in our tracks and would make it literally impossible for her to have dialysis. The doctors have her on oral and iv anti fungal meds in hopes of catching anything before it goes crazy. Subsequent cultures, taken before the medications were started, have not grown anything. This is great news and hopefully she doesn’t really have an infection brewing.

I am optimistic about Emma’s situation. The doctors of course are not. The only difference is that I know God is soo big, there is nothing He cannot do! He is in control. I do not believe that He is through with His plan for Emma.

My New Year is filled with HOPE! Thank you Jesus for giving us HOPE in YOU!

Happy Birthday Jesus!! day 93

Christmas 2012, day 93

Happy Birthday Jesus

The past few days have been busy busy. Navigating this Christmas has been hard. Being away from home is a struggle.

I finally came to grips with the idea. I even attempted some gifts. We have had a tree for some time and even though he is feeling a tad under the weather, Jason has been here with us too. We had some family visiting over the weekend. We even went a tad, okay- waaaaay outside of my comfort zone away from the hospital for a Christmas Eve service. It just seemed like where we should be, so we went.

It was a family service. Of course Maddie was with us. It was so nice to be in church with my family all together- that doesn’t often happen. It was a larger church complete with a band, stage and balcony seating. The seating very much resembled movie theatre seating. We finally found space for 7 and saved seats accordingly. Just about the time that we had counted the number of seats, Maddie sits down and says, “where’s the popcorn?”. Hahah. Hmmm. Movies anyone?! Please note that we do actually take Madison to church with us- just not to big church!

I was a little bit worried about Madison making it through the service. Little did I know- I should have been worried about myself! The songs were beautiful! The lyrics had come alive and were just so much more than mere words set to a tune- the words you have been singing since you were 2. Sometimes we forget to actually internalize the words in the songs- really take in the message- and we end up singing a catchy tune. The first 3 songs we sang(seasonally appropriate), I literally wept the whole time. It had been so long since we had all actually been to church to worship(since we have been here) – I cried. Waterproof mascara is a wonderful thing. As I am holding Maddie and trying to casually wipe the snot and tear mixture from my face- I would dry it up and then start again!

Corporate worship IS important. Fellowship with other believers is HUGE, even if it is not your home church! I know that is one of the things I have missed the most.

Madison made it through the service really well until the end- no nap – not so great of an idea. The service closed with the spreading of the light into the darkness, candle by candle. Whoa. Madison held her daddy’s candle and she was oh so big and well behaved. At the close, they asked people to blow the candles out for safety- oh my goodness!!!!! 2 year old meltdown. The candle got blown out and that was it!! Game over.

This morning Maddie came bounding into our bedroom with the kind of exuberance only 2 year olds have first thing in the morning. Mom asked her if she knew what day it was. Maddie responds, “chocolate day!”. Haha Ahem- while lovely, I reminded her that it was Jesus’ Birthday and that was even better! We opened gifts and ate and went to the hospital to see Baby Sister Emma( which often comes out Elma. Very Elmo- esque.). There was No nap. After an early dinner, Maddie and Jason were watching a movie. The grueling schedule with 48 hours of no nap caught up with us. Maddie was so tired she couldn’t keep her eyes open and kept bouncing her head off of her chest, up and down and side to side, at 7:20!!!!! For some of you this time means nothing because for your kids that is bedtime. At our house we haven’t even mentioned the B word until at least 9 and lately it is more like 11 and even then there is not a tired Maddie to be found! Anyways, she was out and down for the evening- passed out exhausted- at 7:20. We hardly know what to do with ourselves!!

Emma is much more awake and alert now. They have changed her sedation around just a tad. She is handling it well. Her dialysis continues to work fairly well and her central line continues to leak a few times a day. She is so beautiful and I am amazed by her on a daily basis. The special treat was getting to watch the snow fall from our penthouse view in the PICU on this very different Christmas!

Here are a few photos from yesterday and today!!

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Emma

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Madison- Christmas morning

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Jason, Meredith, Doctor Madison and Baby Emma

Much Love and Merry Christmas!!