Good News/Bad News

Some of Rebecca’s amazing PICU nurses missed her and came to visit on their off-day with gifts of fun holiday socks!

I apologize for the delays in between updates – it has taken me 3 days to have the time to sit and write this post in between rounds, meetings, procedures, etc. Carol is so good to fill-in for me when things are chaotic, but this update is very detailed. Prepare yourself for lengthy medical talk.

Monday there were over 12 of Rebecca’s specialists gathered in person and Zoom to discuss her complex case: Colo-rectal surgery, GI, Infectious Disease, Interventional Radiology, Transplant, Hematology/Oncology, Hospitalists, OB/GYN, General Surgery, nursing staff and fellows as well.

This is where we stand with Rebecca’s infection:

Good News –

The multi-resistant Bacteroides bacteria is responding to the antibiotics and Rebecca is no longer septic. This is a HUGE praise! New abscesses have stopped forming, so we are only dealing with the recurrent abscesses that are not responding to treatment and drainage.  

Bad News –

The bacteria is responding very slowly to treatment. Because Rebecca’s infection spread from her lungs down to her pelvic cavity, time is not our friend. During Rebecca’s infection state, her body leaked enormous amounts of fluid from her GI track either from colon leaks prompted from IVIG and/or protein loss enteropathy. This fluid formed in pockets around her lungs, liver, intestines, etc. The bacteria then mixed with the excess fluids and created abscesses (Bacteroides is known to create abscesses).

Strangely, although this was a GI issue, Rebecca’s biggest problem-spot is in her pelvic cavity. The bacteria settled down her abdominal cavity and multiplied fiercely. Rebecca’s ovary and fallopian tube areas are stretched to the brim with infection causing far more pain than the abdominal abscesses. Although abdominal abscesses are very painful, they have more space to grow.

There are two camps of thought in how we should treat our current status:

  • Infectious disease and OB/GYN want to open up Rebecca’s entire abdominal cavity and clear out the infection surgically, wash out her system with antibiotics, and preform a full hysterectomy. Rebecca’s reproductive organs are too inflamed to remove individual parts right now, so a full hysterectomy would be necessary. Rebecca came to terms with not bearing children years ago and has big plans to adopt but removing her ovaries at this age will have long-term effects on her already damaged heart and bones.
  • GI, transplant and colorectal surgery team feel another major abdominal operation at this time would be severely life-threatening on Rebecca’s compromised system and we need to attempt anything else possible in between. I agree.

So where does that leave us? We have tried the traditional draining technique 4 times and yet the pelvic cavity abscesses keep growing back. Tomorrow morning at 8:00 am, we will attempt an out-of-the-box solution and go in for another drainage but in addition, Interventional Radiology will inject the meropenem antibiotic directly into Rebecca’s abscessed area as a lavage (medical wash-out). We hope this directly applied technique will help more than the systemic IV antibiotics.

We ask for prayers for the procedure tomorrow, prayers for the infection to continually clear, and prayers for Rebecca’s pain.

I was told yesterday the doctors were overjoyed because they did not expect Rebecca to live through last week, and yet we still have our girl. I consider that an exquisite unexpected miracle.

Thank you Lord.

Love to each of you,

C

Rest for the Weary

We have a care conference meeting scheduled for Monday morning with 9 of Rebecca’s specialists. Her situation is so complicated, Rebecca’s team needs to carefully coordinate decisions and next-steps together. We could not be more thankful for our marvelous core team of doctors- some of which have poured into Rebecca’s health for over 10 years. Please pray for wisdom. We desperately need wisdom.

I started this post by listing my detailed grievances of the last few days. The miscommunications, the mis-managements, the serious mistakes of a few caused by not looking at charts and creating anaphylactic reactions in my already fragile child, the delayed and then cancelled, then delayed and then cancelled 4 procedures due to lack of staff during a holiday 4-day weekend. The emotional drain reflected in my child’s eyes from the mishaps.

But what the past few days (well really 12 weeks) have boiled down to is:

I am tired. Actually, exhausted.

I am overwhelmed.

I am frustrated.

I am sad.

I am heartbroken.

I am angry.

I am weary.

I used to feel uncomfortable admitting those words during crises. Like somehow my faith was small when my flesh was weak.

And yet our weakness is no surprise to God. In fact, He calls us to Him during our worst, “Come to me, all you who are weary and burdened, and I will give you rest,” Matthew 11:28.

Our Creator acknowledges our exhaustion and then offers what we need the most – rest in Him.

And so, my unexpected miracle is a God who takes my heavy-laden burdens and provides refuge to my soul.

Thank you Lord.

Love to each of you,

C

Alexander holding Rebecca’s hand during a pain spell.

A Hospital Thanksgiving

On this day of Thanksgiving, I wish I could report joyous news that Rebecca is stable. But the harsh reality is – Rebecca’s state is still very tenuous. This multi-resistant bacterial infection is ravaging my child’s frail body and just as we think we are making progress, more abscesses form. The pain of the abscesses is incredible and even slight shifts in movement can cause excruciating pain. We are currently awaiting yet another STAT CT scan for 2 newly developed infection sites. Please pray for our precious Rebecca.

Holidays are supposed to be happy, right? But on this earth, some holidays are just plain hard. And this holiday is most definitely just plain hard.

Today seemed fitting to share my writing from Thanksgiving Day of 2014 – right after Rebecca’s transplant and right after we almost lost her due to a massive hemorrhage.

I was exhausted, depleted and more than a little frightened, and yet my overriding emotion was thankfulness – thankful for Rebecca’s life and thankful for the closeness this trial brought me to my God.

I feel the exact same this Thanksgiving, 6 years later.

Thanksgiving Day, November 27, 2014:

***

I awoke this morning trying to pinpoint what I was most grateful for on the day of all days to be thankful. The obvious answers of Rebecca’s improvement, a loving family, and friends who provided unwavering support—all came flooding to my mind. But something unexpected did as well, something a tad miraculous.

I was thankful for the years of this trial.

Don’t hear me wrong—I would trade my life in a second to stop one minute of Rebecca’s suffering. I plead with everything in me that her body is healed, I pray fervently our family can be together, and I petition the Lord for emotional strength that left a long time ago.

But through that constant power of prayer—I am changed.

“Pray without ceasing” has become my lifeblood. Every breath my soul utters becomes a plea for the Holy Spirit to intercede.

When others ask me to stop and pray—it throws me. My mind is already in constant communion with God. To pause and dedicate time seems almost awkward. The same kind of awkward as someone coming up at the end of a Thanksgiving meal asking you to eat something. You are already full.

Today I am full—because of God and because of this pain.

And through this fullness, the Lord allows me to taste heaven in the midst of my hell. My Creator awakened in me a glimpse as to what my life will be when intertwined with His presence. The fulfillment, the joy, the completed me. It is only a glimpse—a mere snapshot as to what awaits me. Yet now that I have experienced this intimacy, I have no desire to live without it.

When my life was “stable,” “good,” “happy”—I did not need God in the same fervent fashion. It was not necessary to rely on my Savior’s power to get through the middle of my day, hour, or even that unendurable minute.

It is because of this pain I am discovering how His presence envelops me, and how His hand guides my every movement.

And this gift, this intimacy, is what I am most grateful for on Thanksgiving Day. The revelation of my eyes opening to this beautiful Lord solely because of my walk through suffering.“My ears had heard of you but now, now My Lord, my eyes have seen you” (Job 42:5).

***

Thank you for loving us through happy holidays and the hard.

We are thankful today for you,

C

Round 3 Abscess Surgery update

To those who are loving and praying for Rebecca….

Rebecca is out of surgery. The surgeon drained two new areas of abscess and redrained an area from Sunday that had begun to pocket more infection. The abdominal cavity is full of infection which has the potential to form new abscesses. They are very concerned about this and praying that the 3 IV antibiotics they are giving Rebecca can kick-in before things worsen more. As posted earlier today, the specific type of bacteria that is creating the infection for Rebecca, is the most difficult and most resistant form of bacteria to treat.

Rebecca is in pain from the new drains and surgical invasion, but Christyn reports that she is currently stable.

“Dear Father…again, we approach You CONFIDENTLY in the Name of Jesus on behalf of this child of Yours..Rebecca. We ask for Your Healing, Your Peace, Your Comfort, Your Presence, Your Light, Your Hands to be upon Rebecca, Christyn and family now in this moment….we thank You for any progress made today”.

In the Mighty Name of Jesus we offer our prayers….

Hope and healing to all those who are in Christ Jesus….

Prayers – Going Under Again

URGENT MESSAGE to all those who are loving and praying for Rebecca….

Christyn has just found out that the surgeons are taking Rebecca back to the operating room in 20 minutes. This was not planned and not on the calender for today. They did a scan last night because Rebecca was having more pain. Based on the scan and other information, they determined she needs to go to surgery NOW.

Rebecca has new separate areas of growing abscesses. One is very large. These are in her pelvic and abdominal area. The medical team has been able to pinpoint her specific bacteria that is causing the problem. It is called “bactroides”…..this is the MOST ANTIBIOTIC RESISTANT anaerobic bacteria that is known….meaning it does not respond well to treatment. The hope today is to go in and minimally invasively place more drains to try to give these abscess areas a pathway to drain out of her body. Abscesses by nature are localized pockets of infection. However, she is systemically infected basically from head to toe. Rebecca can not tolerate another large surgical opening to her abdomen.

Based on the critical time factor, friends, the Taylors are asking for prayers NOW and throughout the day.

“Dear Father…we run to You NOW on behalf of Rebecca Your child…we gather in Your Son Jesus’ Name from all around the globe on behalf of Rebecca…”

In the Mighty Name of Jesus we offer our prayers…

Hope and healing over Rebecca…

The Gift of Today

The last few days, I thought we were going to lose Rebecca. I spent 72 hours breathing:

Lord please, Lord please, Lord please….” in and out, in and out, in and out, in and out.

I found myself waking with those two words repeating in my soul – relieved the Holy Spirit would intercede for my remaining pleas.

We are still in very serious condition but my weary heart had a moment to sit and praise the Lord for getting us through today. And I am filled with gratitude for this today.

Another day we have our precious Rebecca.

Another day our family is whole.

The gift of today is our unexpected miracle – thank you Lord.

Love to each of you,
C

Update from surgery today

From Carol Nelson:

To those loving and praying for Rebecca…..
Great news!

The surgery was over by 3PM this afternoon. The surgeons were able to access this second abscess without having to make another big incision. The concern before had been potential bleeding from this site. They were able to do so without too much bleeding. They were successful in placing a drain to help rid Rebecca of this site of infection. Christyn reports that this abscess was dangerously close to rupturing through Rebecca’s Fallopian tube and ovary. There are several new abscesses forming throughout Rebecca’s abdomen because the infection has been so out of control and the surgeons are watching carefully. Her pain level is improved already from the success of accessing this particular abscess.

The infectious disease team FINALLY got back a preliminary report on the specific “bug” in which to target with antibiotics. It is a rare multi-resistant anaerobic strain of bacteria, which is why Rebecca has had such a hard time fighting it. She is still on multiple antibiotics but this particular antibiotic they are starting on her is ONLY prescribed by the infectious disease team.

The BIG hallelujah is that there was no BIG incision made, no rupture or excessive bleeding, and they have a preliminary finding of the specific germ to treat with a specific antibiotic!

Rebecca is certainly not out of the woods, but there are some things to celebrate tonight.

“Father God….we thank You for bringing some success to the medical team’s effort today! We pray for rest for Rebecca and Christyn tonight. We pray against the infection and pray for success with the new antibiotic. Thank You for Your new Mercy today over the Taylor family. We praise You our dear Father…”
In the Mighty Name of Jesus we offer our prayers….

Hope and healing to all those who are in Christ Jesus…..

Urgent prayer request

This is an URGENT MESSAGE to all those loving and praying for Rebecca…


Christyn called. Rebecca is very critical. 104 fever. Septic. They are taking her back for emergency surgery. The second abscess they did not access before has grown and must be drained. The docs are trying minimal invasion surgery first, but will open up Rebecca’s abdomen again if necessary. Rebecca has pneumonia. In human eyes, the “dominoes are falling”…


The boys are going to the hospital to see Rebecca before she goes into surgery…
Friends of Rebecca…please pray today for easy access to this 2nd abscess, etc…
Let us stand with the Taylor’s and now before our Lord and Savior..


Hope and healing over Rebecca, Lord Jesus…

Post-surgery update

Greetings to all those loving and praying for Rebecca….


Christyn just sent an update. Rebecca is out of surgery. The medical team was able to drain ~ 100cc of purulent infected fluid from the largest abscess. The other abscess which is smaller, was not able to be accessed because of the risk of bleeding. Because of the urgency of surgery today, they were not able to hold her blood thinners, which can contribute to bleeding issues following any surgical procedure. The surgeons placed drains into various places to help accommodate the drainage from the infected areas.

Rebecca is on two new IV antibiotics which they are hoping will begin to adequately fight the infection. They will do scans in a couple of days to find out if the abscesses are smaller. Cultures will be back tomorrow which will help pinpoint the specific bacteria.


Rebecca had her spleen removed several years ago which helps the body fight infection. Tonight, she is septic meaning that the infection has spread throughout the bloodstream. Her infection is systemic, not just localized. This is a serious development. The next 24 hrs are very critical.


Christyn and Brian are thankful that the medical team got Rebecca to surgery as early today as they did. Christyn reports that “Rebecca might not have made it through the night” otherwise.


Soldiers of Christ…arise…put your armor on…He is Faithful in Whom we place our trust. We do not trust in chariots…we trust in the Person of Jesus Christ. He is the object of our faith. Not an idea…not a cause…but A PERSON…GOD IN THE FLESH…He knows what is best…


Hear our prayers dear Father…shower Rebecca and Christyn this long night in the hospital with Your Presence, Peace, and Comfort….


In the Mighty Name of Jesus we offer our prayers…
Hope and healing to all those who are in Christ Jesus….

Carol Nelson

Emergency Surgery

Going into emergency surgery now. Rebecca is septic and has 2 abscesses that need to be drained immediately. Without her spleen, Rebecca has far less ability to fight this infection and even with the strongest IV antibiotics and Tylenol and Ibuprofen, we have a hard time getting her fever below 103 degrees.

She is very sick.

Please pray for our girl.

Love to each of you,

C