Rebecca graduated this weekend! It was an incredible moment we fervently prayed for. Our hoped-for miracle.
But what struck me the most, was seeing the posts of so many of our friends and followers that watched via live stream and then shared Rebecca‘s accomplishment. I realized the astonishing amount of people around the nation and even world praying for Rebecca to get to this point in her life. Not just praying for her graduation, but praying for her very survival. And this realization profoundly humbled me.
Thank you for loving our family so well. Your prayers are our unexpected miracle.
“Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows,” James 1:17.
Rebecca is recovering one step at a time. The last two days have been her best days in over a year and we are celebrating this two day victory with all our might. We have high hopes for graduation in person and big prayers are going up in our home 24/7 for this dream to happen…
During Rebecca’s last surgery, the surgeon made a decision to keep Rebecca’s ostomy site open as opposed to stitching it together. Rebecca is prone to massive infections and the team was afraid closing the wound would trap similar bacteria that caused Rebecca’s last life-threatening infection. Rebecca was not prepared for this gaping hole when she awoke from sedation in ICU and it was a slightly traumatic discovery. In typical Rebecca style though, she has fully embraced this new, what I deem “mark of courage” and is handling most of the wound-care herself. Over time, this wound should close on its own.
Outside of God, we credit a big portion of Rebecca’s wound healing to a genius invention developed by our dear friend Joe Mims called RegenTX. This product uses the natural and unique anti-inflammatory and anti-microbial proteins in amniotic membrane to help prevent infection and scarring. Joe and his team moved heaven and earth to make last minute deliveries of the material to the hospital pre and post surgery. The world is blessed with brilliant minds such as Joe, that use God’s creation to help heal. We are oh so grateful.
Our Oak Hills Church senior banquet was last month and I am behind sharing pictures. Rebecca missed her senior testimony because of her hospitalization- Rebecca looked forward to this presentation from early youth and was sad to miss this milestone.
To make up for that, our compassionate youth minister, Sam Bernal, asked Rebecca to address the church seniors for a few minutes at the banquet. Rebecca could barely stand from weakness and had already lost 18 pounds due to her blockage. We were not sure how this speech would happen? But, with Nicholas’ support, Rebecca read her entire speech. Our unexpected miracle.
We were so thankful to have this sweet moment. This was our first time walking inside our church building in well over a year. I forgot how much our church family heels like home. And I have missed this home so very much.
This is also not-so-great in the fact that we came home pre-emptively due to the inflammation of Rebecca’s liver. If that sounds backward, let me explain. Because Rebecca’s liver enzymes tripled in number post-surgery, we were forced to stop her PPN feedings and her infusions. We must protect her liver.
In the meantime, Rebecca took a bad turn with an extreme pain factor that hit below her scar line in the center of her abdomen. The pain spasms in waves, creating nausea that turns into serious vomiting episodes. This terrified us all, so the surgeons ordered STAT MRI scans. The scans verified no blockage inside her intestines, which meant the pain is coming from the surrounding abdominal cavity. We have no good answer as to this continuing pain cycle outside of liver inflammation in combination with post-operative complications. One thought is Rebecca’s muscle layers were cut during her scar tissue removal process and Rebecca’s fragile constitution is slow to heal the damaged areas.
When the PPN heart-feedings and infusions stopped, I realized we were back in what I affectionately deem “the hospital waiting game”. Rebecca sat in the hospital doing nothing other than IV fluids, pain-control, wound-care and daily lab work. At first glance, this might seem like a long-list, but in actuality, we have gone home in far more complex situations. If you did not know this about me before, I would like to announce I am a self-proclaimed “passable” wound care expert after Rebecca’s open transplant scar in 2014. Our current and brilliant wound care specialist at University Hospital, Veronica, walks us step by step thorough our newest gaping stomach hole. So Rebecca’s current wound does not scare me at all (okay, maybe a little but we’ve still got this).
Because of Rebecca’s new situation, I asked the team for an early discharge. If we are waiting on the liver’s recovery before taking our next step, then we could wait from home. And so, WE ARE HOME.
Rebecca wants to experience everything graduation-related she possibly can, while she can, even if that means only a few minutes at a time. This morning, Leon Springs Elementary hosted their Senior parade. Leon Springs rallied around all 3 of my children, loved and provided a home for them during some of their hardest years. They are our family. Despite having a rough morning, Rebecca miraculously participated in the parade. Nicholas wheeled her down the hallways and even carried her up the stairs with her other 2021 classmates while the elementary children cheered with all their might. The teachers stood in lines to get pictures and sent their heartfelt congratulations. Tears brimmed our eyes with incredible thankfulness that God found a way for this precious moment to happen.
The class of 2021 wore t-shirts of the colleges they were attending along with their graduation robe. Rebecca wore her Harvard t-shirt (no slight to A&M but she doesn’t own an A&M t-shirt yet!) My favorite moment was when a young child saw Rebecca’s shirt and made her a poster that said, “Good Luck in Harvard”. Rebecca will take that poster with her to college….
Thank you Lord for this beautiful memory. An unexpected miracle for sure.
Rebecca’s Top Ten Graduate Celebration this week was filled with full pomp and circumstance. Brandeis High School had a pep rally for the top ten academic students that included their cheerleading squad and marching band. Balloon archways decorated the room where the families enjoyed a brunch and video presentation of their children.
We experienced this ceremony via Zoom from the hospital bed.
Every time I see the picture of the honorees plus Rebecca smiling through the iPad, I tear up.
I tear up thinking of Rebecca’s high school career – squeezing in the majority of her studies strapped to a hospital bed on narcotic drips, in between surgeries and scans. Her academic journey has been incalculably more arduous than the typical “Top 10” graduate.
And then I am overcome by overflowing gratefulness. Because, despite everything she has been through, Rebecca gets to experience this incredible victory. Even if it is from the untraditional view of a computer screen. Our unexpected miracle.
So, Rebecca needed to go to the restroom yesterday and swung the door open just as I walked out of the shower. Our brand new nurse got a full-frontal nudity view for a good minute and a half. The reason for the full minute and a half was because Rebecca’s IV pole was jammed in the door and until we could pull it inside, I had no choice but to wave in all my nakedness.
Nothing like a great first impression.
When Rebecca and I told Brian this story during his visit, the first thing he said was:
“Why weren’t you wearing your PPE during the shower? This wouldn’t have happened if you were following the rules.”
I cannot possibly express how much I love this sarcastic husband of mine. Rebecca laughed so hard she thought her wound was going to split straight open.
Meanwhile, there is a very traumatized nurse out there getting intense therapy after the eye pollution she experienced in the Taylor family hospital room.
Greetings to those loving and praying over Rebecca….
Christyn sent an update around 5:45PM. She reports Rebecca as “stable”. They are still in ICU and on the sedation IV drips. So far, her pain is better controlled. Hallelujah!!! As of now, she has not encountered any major postop complications.
Rebecca continues having issues with her liver which is “incredibly inflamed”. The TPN (total peripheral nutrition) requires the liver to help Rebecca “digest” the feedings that are provided by TPN. Because her liver is so inflamed, they cannot give Rebecca TPN feedings currently. The medical team wants to use PPN (peripheral parenteral nutrition–which is intended for short term use to “feed” the patient). Rebecca’s central IV line has moved and is not in the correct place, so tomorrow, Rebecca will go back under anesthesia to replace the central IV line. Rebecca then will be able to begin receiving the PPN infusions while they are working on how to improve liver function so that TPN can be administered.
Brian and Christyn are rejoicing that there are no major complications. Thank You Jesus!!
“Dear Father…we are grateful that the first 24hrs postop have been relatively smooth. We thank You that Rebecca’s pain has been managed, for the most part, successfully. We ask for continued rest and healing over her. We ask for a solution to the problem of Rebecca’s inflamed liver. Give the medical team wisdom as they search for answers to how best to treat Rebecca. We thank You for Your continued Faithfulness to ALL of us every day and every minute. We can trust You….You know EVERYTHING…”
Greetings to all those who love and pray for Rebecca…..
Just got the update from Christyn! Rebecca is out of surgery. She was transferred straight to ICU. She will be recovered in ICU. Considering this was another huge surgery, Christyn reports the surgery went “wonderfully well”.
As you know, there were several goals in this latest surgery:
1) The medical team was able to separate her intestines from her bladder so that the fistula area is now clear…HALLELUJAH!!!
2) Rebecca had a tremendous amount of scar tissue that had hooked around multiple sections of her intestines which was causing the full and partial blockages. The doctor described her intestines “like a roller coaster with extreme ups and downs”. The scar tissue was removed and an amniotic solution was used to coat the intestines to hopefully help prevent future scarring. The team was very concerned how quickly Rebecca had scarred down after only 4 months from her last major surgery. Brian and Christyn are asking for PRAYERS THAT THIS AMNIOTIC SOLUTION WILL HELP PREVENT FUTURE ADHESIONS.
3) The stoma (ileostomy) that Rebecca has had for several months was reattached and closed. HALLELUJAH!!!
4) Rebecca is on a sedation IV drip for the next few days to help her tolerate the postop pain. Christyn reports Rebecca wakes up for brief moments screaming and then goes back to sleep.
So, this is a road sadly well traveled for Rebecca and Christyn (and the males in the family). The next few days will be about pain management, prevention of infection, and trouble-shooting the moment by moment changes that can occur after big surgeries (for anyone, but especially Rebecca).
“So dear Father…we come to You again as a body of believers. You are the Healer. You are the Comforter. You are Sovereign God. You are the Source of all good things. We ask that You bring Goodness to Rebecca and shower her with what ONLY You can give….Healing…Comfort….Goodness…after all, Father, that is Who You are…we ask You to reign over her and in her with Your Presence…all of these things…bring them to Rebecca. We ask for Your Protection against scarring in her intestines….for Your Protection against infection….and for Your Protection against any other adverse potential problem…..bring the Shield of Your Faithfulness to cover Rebecca….hear our individual prayers dear Father…we love You and thank You for what You have done, are doing and will do for Rebecca.”
In the Mighty Name of Jesus we offer our prayers to You….
Despite our conglomerate pleas across the nation – we need surgery.
I have waited to write these words because our family has grieved them with many tears. After begging the hospital team to release us on a trial basis – we are home for the week while her 3 surgeons make plans to open Rebecca’s abdomen back up on Tuesday. We are cramming everything possible into this week – AP tests, senior pictures (thank you Dina Selva!), a church senior banquet on Friday and a Symphony Belle presentation on Saturday. Then, we will head back to the hospital for another major surgery to fix her hernia and/or scar tissue of the small intestines, re-work her stoma and heal her fistula. More ICU time, more sedation drips, more increased pain factor from a sliced-through abdomen, more isolation from the family, more – well more of all hospital madness.
This surgery is hard for me to accept because Rebecca looks so GOOD! She is not doubled over in pain unless she eats. So, she can’t eat. And even liquids create tremendous pain when passing through the damaged portion of her intestines. So, she barely drinks. Unfortunately, TPN feeding is not an option because her liver is still inflamed. Therefore, Rebecca has lost 10 pounds in 2 weeks. This cycle will continue until we operate on her intestines, so waiting until after graduation is not an option. The surgery must commence.
I look at Rebecca laughing and smiling and keep telling myself:
“Surely we can wait??? Surely, we don’t have to make this happy, joyful child go back to a comatose state with her abdomen wide open? Surely, we can delay until after her friend’s COVID-friendly prom and after her Top 10 graduate banquet and after all the other graduation events Rebecca excitedly planned all year from the hospital bed? Surely Lord, this surgery does not have to be now…”
But surely it does. And I am not ready for this – none of us are.
We are sad. All of us. Painfully sad.
But we will celebrate this week with full-power. And laugh and cry and love and build senior memories together. And those memories will be our unexpected miracle.