Going Home for Christmas!

It has been a week since my last update, and it has been a very busy week.  We have had many test, appointments, visits from old friends, new friends, and family.  Bethany and Jonathan got to spend the night with their uncle, aunt, and cousin, and Angela and I got a couple of hours to ourselves.  All in all its been a good week.

But today, we found out that we may go home for Christmas!  Awesome!  We really did not know what the verdict would be until mid-afternoon whether we would be able to definitely be going home or not.  Since then, we have been frantically trying to pack.

We will be home for Christmas, but we will have to return this Friday for more testing.  All of Bethany’s numbers are improving, but they continue to be sporadic.  If her tests on Friday are good, then we will be allowed to return home until Jan. 2 for more tests and a clinical visit.

We are all super excited about coming home.  Bethany has continued to heal well which has made all of us quite homesick.  Bethany’s liver is still recovery from this last bout with rejection, so we must remain diligent to keep her healthy, take her medications as prescribed, and stay fervent in watching those liver numbers and anti-rejection numbers.

Prayers & Praise!

  1. Praise to our Father for healing!  We give great praise to God for Bethany’s good progress in healing.  We can see improvements daily, and we are all so pleased.
  2. Pray that we can get Bethany’s anti-rejection medication dosages just right.  We are currently adjusting them 1mg at a time.  Bethany seems very sensitive to dosage changes.  1mg up this past week sent her rejection medication way high which caused her severe headaches and tremors.  1mg down a week and a half ago caused her rejection levels to fall so low that Bethany actually experienced a mild case of rejection.  Getting these dosages just right is critical to Bethany’s ongoing care.  It will also determine how often and long we will need to be in Atlanta.  Just Friday, her doctors were suggesting that we needed to remain in Atlanta for another 3-4 weeks, but since she showed such good improvements, we are cautiously being allow to go home.
  3. Pray for our transition home.  We are all super excited about being home, but we have also been away for 5 weeks.  I know we will have much catching up to do on many things.
  4. Visits.  I can imagine many will want to visit with Bethany and us once we are home.  We want to see everyone, but visits might have to wait.  We are all tired and Bethany is on a lot of medication which suppresses her immune system.  We have to protect her and her new liver as though she had no immune system.

 

What does this mean?  It means if you are sick or think about getting sick, please call, email, text, write, or send smoke signals.  We can’t let Bethany get sick.  Bethany can go out, but she needs to avoid high concentration of people (i.e. – no Sunday school for many months).  She can go to church, but she must sit away from big groups.  Please be patient and pray for patients for all of us as we learn how to best care for Bethany and her new liver.  We really are excited about being home and seeing everyone, but we will need to take it slow.

Thank you can never say enough for all the ways your prayers and support have carried our family through this past year.  I know only eternity will reveal all God has accomplished through your prayers and kindness on behalf of our family.  I deeply pray that we all see eternal differences.  I pray people that none of even know will come a greet us with greeting of thank you for how you prayed, shared, and gave.  Its because of what God did through you that I heard of Christ!

Bless you all, bless you everyone, bless you and Merry Christmas!
Taylor, Angela, Bethany, and Jonathan

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Being Discharged from the Hospital!

Bethany’s liver numbers have improved enough over the weekend to allow her to be discharged back to the Ronald McDonald House today!  Yeah!

We will need to remain here in Atlanta for at least another week so Bethany’s doctors can continue to monitor her liver enzymes.  They have added another anti-rejection medication which should eventually allow us to use less of Bethany’s Prograf (this is also an anti-rejection medication).  Prograf is extremely hard on the kidneys, so we want to use as little of this as possible.

Hopefully, we are starting to get a handle on how to best care for Bethany’s new liver.  The goal is to get her liver stable without signs of rejection, use as little medication as possible, but use enough to ensure Bethany’s immune system doesn’t attempt to reject it again.  It is a fine line we are trying to walk, and Bethany’s doctors are doing a great job.

Thank you again for all the great notes, texts, calls, cards, and prayers.  They mean so much to each of us.

This weekend has been great for two reasons:  a face time call from our Sunday school class on Saturday night, and a wonderful visit from family yesterday.  Saturday was our Sunday school class’ annual Christmas party.  We weren’t able to attend last year because Bethany was in the hospital in Birmingham.  Obviously, we couldn’t attend this year either, but that didn’t matter.  Our Sunday school class brought the party to us via face time.  It was so good to see our church family.  They have been so faithful to support and pray for us through this entire journey.  We spent about 30 minutes talking and laughing together.  They even sang to us!  God’s grace, what a blessing!

Yesterday, we had an amazing day too.  Mike, Kathy, and Shelby Edwards, and Randy, Karen, and Catherine Montz came for a visit!  They brought gifts and a whole sack full of joy for everyone.  We all gathered in Bethany’s very small room at the hospital and had ourselves a family reunion like only members of the Maddox family can!  We over embellished our stories, laughed, talked a little political intrigue, and were generally a nuance to the entire liver transplant floor.  It was awesome!  Thank y’all so much for the visit.  It made our weekend.  It was a whole bunch of normal amongst an ocean of obstacles.

The fun didn’t stop there.  After the Maddox clan left, my brother John and his wife Donna and son Noah came in for a visit.  The kids played games, the brothers talked tech, and we all had a very nice visit.  John and Donna have been great the whole time we have been in Atlanta.  They have taken Jonathan to do things with them several times, they have brought us food, and they have even done our laundry.

Ain’t it good to be loved a whole lot!  That’s how we feel, loved!  We love each of you too so much, and we can’t wait to see all God will do as a result of Bethany’s healing.

Praises to our good and gracious God!
Taylor, Angela, Bethany, and Jonathan

Biopsy Update:

Sorry for the delay in updates.  Thursday and Friday were busy days.

Bethany did well with her biopsy.  She is still very sore.  This is the first time that she has had a double biopsy.

The biopsy showed that Bethany is experiencing a mild rejection in the left lobe of her liver.  We have started Bethany on iv anti-rejection medication.  Bethany received a dose on Thursday night, Friday, and she just received her final dose a few moments ago.

Bethany’s liver numbers increased dramatically yesterday, but thankfully, today her numbers have begun coming down.  Bethany will be in the hospital until at least Monday.  If her numbers do not continue to come down, Bethany will possibly need another biopsy and a dye test to get a closer look at her bile ducts.

We are all thankful for the great care Bethany continues to receive.  Thank you also for your continued prayers.  Please pray that we can get this episode of rejection under control.  Pray also for no more setbacks in Bethany’s recovery.  Finally, please pray for a good clear understanding of how we need to care for Bethany’s new liver long-term.

Thank you!  Blessings, and Merry Christmas!
Taylor, Angela, Bethany, and Jonathan

Post Hospital Discharge Update # 3:

IMAG0466 (1)Bethany had blood work drawn today in the morning, and then we had clinic this afternoon. We found out that her liver levels have elevated once again. Because her numbers remain high, Bethany’s doctors want to do another liver biopsy in the morning. Bethany will stay overnight at the hospital and maybe longer depending on the biopsy results.

Her doctor believes at this time these high numbers can only be the result of 1 of 3 things.

  1. A narrowing of her bile ducts.
  2. Rejections.
  3. A virus.

The biopsy will hopefully give us a good idea of what is going on.  We’re not sure how long Bethany will stay in the hospital.  We’re hoping for just the one night.

Please pray in these ways:

  1. Clear information from the biopsy.
  2. No extra pain caused by the biopsy.
  3. One night stay in hospital.
  4. That Bethany’s current pain medications would not confuse our understanding of her liver numbers.
  5. Clear plan to deal with these complications.
  6. Good sleep for everyone tonight.
  7. Patients for the entire family as we live in close quarters.

Praises!

  • Bethany continues to heal well from surgery.
  • We’ve been able to reduce and space out some of Bethany’s pain medications.
  • We had a wonderful time seeing The Hunger Games.
  • The apartment we are being allowed to stay in here at the Ronald McDonald House is wonderful.
  • Jonathan is doing great.  He is an awesome young man!  Very proud of him.
  • We have wonderful doctors taking good care of Bethany.
  • Amazing support from family and friends.

As we update each few days, please know that each of you mean so much to our family.  We love you and pray for you daily.  We are amazed with the concern and kind demonstrations everyone continues to show our family.  Thank you!

Looking forward to sharing our next great update tomorrow.  Last week your prayers resulted in helping Bethany avoid a biopsy and leave the hospital.  What will God use you for tonight?

Blessings,
Taylor, Angela, Bethany, and Jonathan

Post Hospital Discharge Update # 2:

I just received Bethany’s new liver numbers from this morning, and we have seen an improvement in all her numbers!  They are still far from normal, but they are going in the right direction.  This means no liver biopsy at this time!  Yeah!

Please continue to keep Bethany in your prayers.  We really need to see these numbers normalize.  Thanks!

We all had a good weekend out of the hospital.  It has been so nice for all of us to be together.  Bethany has done well.  She continues to have pain, but we have been able to use less pain medication!  I think we are seeing improvements, but the extra activities and more normal schedule have helped enormously.

We are about to leave for a movie!  The week we were called for transplant Bethany had plans to the new Hunger Games movie on opening night.  We even had our tickets already.  Well, that didn’t happen.  So, in a few moments, we will be headed to the theater.  Both Bethany and Jonathan are very excited.

Thank you again for everyone’s prayers, cards, and calls.  Keep them coming.  God is hearing them, and we still need to see Bethany’s numbers normalize and her pain to leave.  We all also still hope to be home for Christmas.  Bethany’s continued improvement is a must for this to happen.

In His grace,
Taylor, Angela, Bethany, and Jonathan

Post Transplant Update # 10 or Post Discharge Update # 1!:

Huge PRAISE!  Bethany’s liver numbers dropped enough with today’s blood work to allow her to be discharged from the hospital with no liver biopsy!  Praise God!

We don’t really know the reason for the drop in her liver numbers, and they are still very elevated.  But, her doctors wanted to give her the opportunity to get out of the hospital and see how she did.

We will continue to stay at the Ronald McDonald house here in Atlanta for at least the next 2 weeks.  Bethany will have blood work drawn on Mondays, Wednesdays, and Fridays.  On Monday, if her liver enzyme levels are still elevated, her doctors might still wish to do a liver biopsy.

Please continue to pray that God will normalize Bethany’s liver enzyme levels.  Also, pray that Bethany won’t need to be readmitted to the hospital for a biopsy or anything else.  She has had such a struggle these past 2 1/2 weeks.  A little rest and good recovery without setbacks will go a long way for her spirit and body.

Continue to pray we will be able to manage Bethany’s post surgery pain.  She continues to hurt a good bit.  I believe she is doing great.  But, as we remove pain medication or try to stretch out the dosages, it sets her back pain wise for a day or so.

Several folks have asked about sending something to Bethany.  We should be here in Atlanta for at least the next 2 weeks.  Below is the Ronald McDonald House address along with our room number.  Please address everything to either myself, Angela, Bethany, or Jonathan.

By the way, Jonathan has been doing great.  He’s a great brother, and continues to show genuine concern and compassion for Bethany.  Thank you for praying for him too.  He carries Bethany’s burden with him always, and loves her deeply.

Here’s the address:

795 Gatewood Rd NE,
Room # 203
Atlanta, GA 30329

As always, you can reach us via email, text, or phone.  We are so thankful for our family and friends.  Your prayers are making the difference daily.  We would not be able to weather these rough waters without our faith and the prayers and love you continue to pour upon us.

Prayer warriors, continue to mind your gap in the wall.  We need you.  We have calm and peace in the midst of great adversity, and it is because of a loving and great Savior and your sacrificial prayers.  We are strong because of you.  Keep up the good fight!

In His grace,
Taylor, Angela, Bethany, and Jonathan

Post Transplant Update # 9:

Sorry for no update the past few days.  We’ve had a lot going on with Bethany.  We believed we would be discharged from the hospital yesterday (Wednesday, Dec. 4th).  Monday and Tuesday was spent with pharmacist, doctors, and nurses preparing to leave.

On Monday, we also learned that Bethany’s liver numbers were on the rise again.  Tuesday, her numbers continued to increase.  Yesterday, Wednesday, her numbers went up again.

The doctors don’t believe this is an issue of rejections.  They did decide to increase her anti-rejection medication as a precaution.  Bethany had an MRCP late yesterday afternoon which re-imaged her bile ducts via MRI.

This morning her blood work showed that her liver numbers have continued to increase.  We have spoken with the doctors about her MRI yesterday.  No obstructions were found, nor did they see other reasons for her elevation in liver enzymes.

The plan now is to do another liver biopsy tomorrow sometime.  This should give us a good picture of the liver’s health.  Obvious concerns would be rejection (which would be odd considering her immunate suppressant levels are very good right now), re-occurrence of her primary sclerosing cholangitis, or an infection of some sort.

I’m not sure when we will know the results of tomorrows biopsy.  I’ll be very surprised if we discover anything tomorrow.  Most likely, we will remain in the hospital until Monday.

Angela and I are doing well.  We understand that these are just some of the bumps that come with a new organ.  A transplant is never a total cure.  At best, it means a healthier life, but a transplant comes with a whole new set of medical issues.

Please pray for Bethany.  She is obviously very disappointed.  I think Angela and I would be too if the Lord had not prepared us for all the ups and downs of life with a transplanted patient.

God prepared us for these ups and downs by bringing a very special couple into our lives who have also gone through transplant themselves.  Our friend is not a liver transplant patient, but we have still been made aware of the many difficulties associated with having had a transplant.  In fact, they are the ones who told us, “Having a transplant is not a cure.  It’s trading one set of problems for another.”  This was great advice and a great reminder that receiving a transplant is wonderful, but it’s not normal for the body.

We are keeping Bethany’s spirits up as best that we can.  She continues to make good advances with walking and activities.  Yesterday, she did a good bit of walking, and she visited the activity room.  She also visited the library on the 2nd floor.  There she received another stuff animal dog.  He has not received a name yet, but he is really cool because he is dressed up as Spiderman.  He also came with a gift card to iTunes which has become especially handy since she receive an iPhone 5c as an early birthday present.  The iPhone is also a great distraction and therapy device.  It has really lifted her spirit.

Please continue to pray in these ways:

  1. Pray for Bethany’s liver numbers to come down on their own.
  2. Pray for the discovery of the cause of Bethany’s liver number elevation.
  3. Pray for her biopsy tomorrow.  Pray especially for Bethany to not be anxious.  She is so ready to get out the hospital and feel normal.
  4. Pray especially hard that Bethany won’t need to return for another exploratory surgery next week.
  5. Continue to pray for a reduction in Bethany’s surgical pain.  I her pain levels are getting better, and that she has made some amazing improvements.  But, please continue to pray about this.  We have really pushed Bethany to reduce the pain medication.  She continues to improve, but this has been very hard on her and she is very tired.
  6. Pray for the rest of us.  We are all hospital tired.  We were are geared up to move Bethany out of the hospital, and begin the progression towards home in a couple of weeks.  This schedule might still be possible, but it could be delayed as well.
  7. Praise!  God has been so very faithful through this entire process.  Every time some difficulty arises, He has given us the strength needed to handle the situation.  Further, God has been faithful to provide our every need, and we give Him the full glory.  Needs are being met before we have time to worry about them.

Here is just one example:

Yesterday, we found out that one of Bethany’s anti-rejection medication would cost us about $400 a month.  We thought, “Wow!  How will we pay for that?”  Before we had time to think about this cost, a foundation from Angela’s hometown called Angela to let her know they wished to help us.

This organization was established to help families with medical needs.  They specifically help with non-medical needs related to ongoing medical care.  They have sent us a check for $500, and they contacted the Ronald McDonald House here in Atlanta to pay for our room while we are stay here in Atlanta!  Amazing!  Praise God, the one who takes care of the needs before we even know we have a need.

As a side note, the Lord brought it to my mind to ask for a prescription co-pay card for the anti-rejection medication.  This card helps to reduce our co-pay for this drug to $80 a month instead of $400.  Our insurance company has already adjusted and credited our account for the $320.  Praise God!

So through all this, we give God great praise.  Thank you for your prayers, notes, cards, and calls.  Each of you are making an enormous difference in our lives.  Thank you, thank you!

I will continue to update daily.  I apologize for missing a few days.  I think you can understand why.  We love each of you!

In His grace,
Taylor, Angela, Bethany, and Jonathan