Home!!!

We are home!!! Hallelujah WE ARE HOME!!!

Brian came to rescue us from the hospital in the middle of the storm last week after my friend Dr. Dina Tom moved heaven and earth to make sure Rebecca could get home as safely as possible (especially considering it was earlier than projected).

Dina was in her residency program just as Rebecca entered the hospital almost 11 years ago and has worked diligently and fervently on Rebecca’s care ever since. This woman has seen us through our worst and best moments – all the way from doing rounds with me in a hospital towel because there was no time to get changed in Rebecca’s critical condition, to celebrating in formals at Rebecca’s Wish Gala. Dina has lived through our highs and lows right alongside us.

Dr. Tom is compassionate, kind, intelligent and never stops pursuing what is right for her patients. But most importantly, Dina is all-heart. We love our Dr. Tom and were blessed the day she entered our lives.

Below is a picture of a victorious Dr. Tom after preforming an unexpected miracle by driving to the hospital on icy roads just to pull Rebecca’s central line and get Rebecca the medications she needed after insurance/pharmacy messed up the orders appropriately 501 times….

Thank you Lord for the Dina Tom’s of the world.

Love to each of you,
C

152 Days

Every time I utter the H— word, something happens.

If I even think we have a chance to go home, some unforeseen complication sabotages my grand plans. This week, complex migraines were our mitigating factor. I keep trying desperately to get Rebecca home for a reprieve before we have to turn around and come right back for plasmapheresis/infusion/treatment weeks. But migraines (most likely prompted from her neurological disease paired with withdrawal symptoms) have thwarted our plans. We have already trialed two IV migraine cocktails and are still struggling. We know Rebecca’s body is fragile and we have many outstanding items to address, but even a small break at home would bring emotional and mental wellness that is impossible to procure in the hospital during pandemic shut-down mode.

Today marks exactly 152 days in the hospital since our admission the first week of September.

152 DAYS.

I know this not because I counted, but because Rebecca and Nurse Matt got out a calendar and counted each individual day. And yes, Rebecca subtracted the blessed week we spent at home over Christmas. The debate on ‘days in the hospital’ started because our tribe loves to feed our caregivers a variety of fat, sugary, gluten-filled treats. Ms. Sharon dropped off one of those particularly delicious treats for our staff and as I was delivering them to our night-nurses, three of them sheepishly turned the cookies down. This is unheard of in the world of nursing and I was momentarily fearful they were all coming down with a bug. But no, apparently they decided to band together and go on a Keto-friendly diet.

And apparently, it was because of us.

I told them I wasn’t sure what was so friendly about any diet – Keto or not and didn’t they know no hospital staff should ever be on a diet when the Taylor family was hospitalized??

Taylor family = Tasty Treats

After my lecture, we all looked at each other and laughed because, in reality, if the nurses had to wait on us to leave the hospital, they may never go on a diet.

We don’t visit the hospital, we live here.

My brother-in-law, Tim, and my two nephews came to visit my boys from California to cheer them up. Tim came to the hospital and tried to get into the lobby, but the check-in lady told him more than a few times that his request was impossible. The check-in lady then saw me walk over waving at Tim and exclaimed, “You didn’t tell me you were with her. She lives here!”

This special treatment bought Tim some time in the downstairs lobby – a big deal for a hospital in the middle of a pandemic. I may not get VIP treatment anywhere else in the world, but apparently, I am a VIP in this hospital….

If I truly believe my God is in control, then it would follow to believe God is not surprised Rebecca and I are in the hospital at this particular moment for such a time as this. Even if that ‘such a time’ lasts over 152 days. Yes, we pray to be home and united as a family but just because our prayers have not been answered in the way we want, when we want, does not mean our God is not working all around us. Even from a tiny hospital room in the middle of a pandemic. Sometimes, I get the privilege to see God’s inner-workings, sometimes I don’t. But the Great Almighty is still working none-the-less.  

During our lengthy hospital stays we build our deeply bonded relationships. Because relationships take time to cultivate and build a level of security that turns to love. And God understood that. So while we pray to be released from our seemingly endless hospital stays, God gently answers with, “I know you want to go home, but I have a purpose for you here that far surpasses your desire for comfort. Trust me.” 

After we lost our baby Annabelle, and then had a subsequent miscarriage, I mourned the children I would never raise. But God revealed to me a different plan He crafted. One that was exquisitely beautiful in an “only-God-kind-of-way”. One that required Rebecca and I time living in a hospital.

The Lord brings many hurting people in our path, but the most treasured of all relationships are my “hospital children.” The children introduced to me during our lengthy stays. The children that became my unexpected miracles.

One of these hospital children God brought me was a little girl named Josephine. Josephine was hospitalized and had not seen her parents in well over a year. As a young child, she experienced life’s most excruciating circumstances, by herself. She was dying and she was alone. Unable to walk with her ailing body, Josephine was completely dependent on others. And she was incredibly difficult, if not down-right impossible to be around. She fought her caregivers, screamed at her doctors, kicked, spit, and cursed at her nurses. She yelled at other patients and disregarded all rules. She lived the adage “hurting people hurt others.”

Josephine desperately needed someone to love her. Someone who was not paid to take care of her. Someone who would not abandon her during her woeful existence. And God put Josephine in the room right next door to us. Slowly but surely this little girl opened up her hard, outer shell of a layer. She spent hospital holidays as a part of our family and eventually called Rebecca her sister and me her mom. When we came back to the hospital after a reprieve at home, we requested the room right next to Josephine again.

We loved our hospital child fiercely. But when you feel a furious love from God, that furious love bursts forth—it cannot be contained, and my child Rebecca burst forth a love that overflowed.

Years later, Josephine left the hospital with a foster family that took special needs children. I missed Josephine dearly and had not seen her for quite some time when the hospital staff woke me up early one morning from my hospital bed and asked me to come outside. Still in my night-clothes, I thought I was entering a doctor’s meeting and instead saw my Josephine down the hall in her wheelchair. As I started running toward her she asked me to stop. Laboriously and painstakingly, Josephine got up from her wheelchair and walked down the hall into my awaiting arms. The hall was lined with hospital staff that was cheering for her every step toward me. Tears were flowing full rivers from all of us as I saw this child take the first steps I had ever seen. Josephine said she had to come back to introduce her new foster mother to her hospital mother.

Bonhoeffer once said, “We must be ready to allow ourselves to be interrupted by God.”

I was never so happy God interrupted my life. My wounded heart, hurting over my babies that would never be born, was healing over my hospital-given children. God knew though, we needed to live in the hospital to experience His divinely appointed plan. So while I continue to pray fervently for our family to be reunited at home, I am open God’s interruptions, even if those interruptions last more than 152 days.

Thank you Lord.

Love to each of you,

C

A Past Hospital Valentine’s Day

No NEW Problems!!!

Unexpected miracle = No NEW Problem!

Rebecca’s continued bleeding is caused from her original post-operative hemorrhage and her leaking anastomoses site (the place where her intestines were stitched together) that has not fully healed. Rebecca is slow to heal with her compromised immune system and constant regimen of steroids.

This massive post-op hemorrhage caused clotting that formed all throughout Rebecca’s lower intestines. All movement since Rebecca’s colectomy surgery last month, has caused these clots to dislodge and pass. Although this might not sound good because she still has clots left in her intestines- it is actually great news! This means there are no NEW problems (like ulcers or colitis) with Rebecca’s intestines and merely old problems that have yet to be resolved.

This was the best news we could have hoped for under the circumstances and we are celebrating. I laughed with a friend and said, you know things are bad when you celebrate an intestine filled with blood clots…..but celebrate we will!

Thank you for your prayers and thank you Lord.

Below is a picture of Brian who hides in a random corner of the elevator to make Rebecca smile before and after EVERY Operating Room transport – which means approximately a thousand times….

Rebecca decided this time, we needed a picture. Dad’s that make their daughter’s laugh to forget their pain are worth far more than gold.

Love to each of you,
C

Back to the OR

Prayers very much appreciated. Rebecca is going back to the Operating Room this afternoon. Since Thursday’s procedure, Rebecca has continually bled and passed blood clots rectally.

The doctors need to discover the root of the problem (which must be a post-surgical complication) so they are going in again this afternoon.

Thank you for loving us through this difficult journey. We could not survive without your prayers and support.

Love to each of you,
C

16th Birthday Boy!!

Unexpected miracle = Rebecca getting to wheel outside to celebrate Nicholas’ 16th birthday in person!

Rebecca has not seen her brothers in well over a month due to the new, strictly enforced COVID hospital precautions. Although she was struggling to sit up, she was determined to wheel outside and surprise Nicholas. Rebecca has been hospitalized for 6 of Nicholas’ birthdays and we typically plan grand hospital parties. Because this was not a possibility, Rebecca was determined to have a party at the entrance of the hospital.

The boys burst into tears seeing her – well, let’s be honest, we were all in tears.

A HUGE thank you to Yaya and Papa for coming in town to celebrate and so many friends who helped make Nicholas’ day so special. He was showered with love and I am fairly certain it will be a birthday he will never forget.

Thank you Lord.

Love to each of you,
C

Post-procedure update

Greetings to all those who love and pray for Rebecca….

Rebecca got out of surgery close to 5PM this evening. They had a late start. Christyn reports that there was no fistula found. The likely cause of all the fluid in the abdomen is from ALL THE EXTRA FLUID she has received in the past days and weeks from blood transfusions, plasmapheresis, IV fluids, etc. All that fluid is transfused in by means of an IV, and eventually it has to go somewhere. The vascular system and the cells can only take so much fluid and then the excess fluid begins to “thirdspace”. The fluid begins moving into the extracellular spaces. This has created all the extra fluid in Rebecca’s abdomen. This actually was the “best” scenario they could have found because it can be corrected through other medical means without surgery. While Rebecca was under anesthesia, they removed the 32 staples that have been in place for a long time. She is healing, however slowly. She has a peritonitis (an inflammation of the lower abdominal cavity) that is what is creating most of her discomfort, but at least the incisional staples were removed while she was “asleep”. That should help Rebecca be a bit more comfortable. During the procedure, the medical team obtained new cultures to see if the infection is improving. Christyn reports that “Rebecca is recovering well” from the procedure today. Hopefully, prayerfully, there will be no more surgical “openings” of Rebecca’s abdomen!!

“Dear Father…we again come to You as a unified body of believers in You, Your Son Jesus and the Holy Spirit..We lift Rebecca to You and ask that You have Your Way in her life this day. May she and her mom sleep this evening and find rest for their bodies and their soul/spirit…”

In the Mighty Name of Jesus we offer our prayers…

-Carol Nelson

Another Day, Another Infection

Another day, another infection. And yet, we are still standing. Well actually, Rebecca is laying down, not standing, but standing just sounds so much better….

Rebecca now has an E. coli and a rare strain of Klebsiella we are aggressively treating with a super antibiotic.

One day we take a few steps forward and the next a giant leap back. One day 3 steps forward and the next we stabilize. Back and forth, back and forth, with the hope our forward steps eventually outweigh the back.

Oh, and did I mention tomorrow happens to be my precious Nicholas’ birthday we will miss once again??

Rebecca’s body settled after the femoral artery hemorrhage that took us a good day to get under control due to Rebecca’s blood thinner shots and aspirin. We started the weekend with a wound infection and ended with two more bacterial infections. Rebecca’s new infections are believed to be caused by a fistula in her pelvic cavity leaking fluid through organs that should be sealed. Where the leak/tear is coming from – we are not sure? We just know Rebecca is leaking copious amounts of fluid.

Tomorrow Rebecca will go under anesthesia again for the doctors to try and discover the source of her fistula/tear/leak. Her CT scan only revealed excess fluid in her pelvic cavity but not a specific cause.

And did I happen to mention tomorrow is also my precious Nicholas’ 16th birthday??

One of my favorite doctors came to talk to me regarding Rebecca’s status – we discussed the scary femoral hemorrhage, her 2 new infections and now the potential fistula – I was exhausted just giving her the weekend update. She asked me if I felt like the story of the Dutch boy at the dam who put his finger in the spouting hole. But in our case, once that leak was solved another would erupt, and then another, and another and another. Every available finger and toe plugging the constant newly formed leaks.

My doctor is brilliant. Not only for her medical skills but her story-telling analogies as well. Because –

THIS. IS. EXACTLY. HOW. I. FEEL.

Rebecca’s body is the broken dam and I am the little boy running from problem to problem trying to seal all of the newly formed potential catastrophes as fast and furiously as they are erupting.

But I cannot to keep up. The leaks keep flowing and my head is barely above the rising waters.

Good thing I have a God whose fingers and toes are far more capable of holding a dam together than me. So today I will cast my burden upon the Lord so He will sustain me, He will sustain Rebecca’s body, He will sustain Nicholas’ disappointment – my unexpected miracle.

Thank you Lord.

We would covet your prayers tomorrow.

Love to each of you,

C

Cast your burden upon the Lord and He will sustain you; He will never allow the righteous to be shaken,” Psalm 55:22.

Brian picked up food and drove to the hospital entrance while parking with his hazard lights on last weekend so I could have a “date” with my boys in the truck. My favorite moment all week.

Scary Night

To those who are loving and praying for Rebecca…Today’s update was actually written by Brian to the family last evening and Christyn forwarded it to me. I am sharing it unedited just as Brian shared it. Christyn and Rebecca’s day yesterday was TOO WILD for Christyn to try to update anyone but her husband.

“First and foremost, R is ok now. Needed to say that before you read the rest.

Waited all day to do CT scan to check a potential fistula they think R might have and right before transport came to get her, she stood up to go to the bathroom and the catheter in her femoral artery came out and she started hemorrhaging. She called for C who immediately screamed for help while applying pressure to stop bleeding. 10+ docs and nurses ended up helping for 60+ minutes helping to stabilize and pull catheter. R is still struggling to control bleeding hours later and teams are coming in continually changing dressings the last few hours but the bleeding is less and less.

If that had happened in her sleep, we would have had a much different ending. Thanking God she dodged yet another bullet. Thankful beyond words for C and med team’s help. I was working at home with boys and didn’t even know this was happening since C couldn’t exactly stop to call me.

We cancelled tomorrow’s third plasmapheresis since her body has just been through too much right now. Postponed CT until after bleeding stops tomorrow (she has to be perfectly still right now with constant pressure on her site). We will read CT to see what we need to do there.

Girls are INCREDIBLY exhausted physically and emotionally. We’ve got to somehow find a way to get R stable, free from infection, and somewhat out of pain so we can hopefully go a few days without another serious complication. Please pray for rest and peace.”

“Dear Father…we DO PRAY FOR REST AND PEACE OVER THE WHOLE TAYLOR FAMILY. We are concerned for how long this has gone on…we are concerned for Rebecca and the repeated physical trauma she continues to endure…we are concerned for Christyn who has endured day after day after day after night after night of a continued emotional roller coaster ride that does not stop…we are concerned for Brian and the boys who live daily life without the presence of a wife/mother or sister….we are concerned about this family who continues to face SUCH ADVERSITY….we lift them to You, Father. You are THE ANSWER…You know Your Ways and Your Plans…have Your Way Father…bring them Your Peace that passes all understanding in these times of great hardship…please bring Rebecca to a calmer more stable state…soon”

In the Mighty Name of Jesus we offer our prayers…

-Carol Nelson

Homecoming from the Hospital – last October

The Power of Under-Thinking

Rebecca’s procedure went well yesterday. We were also able to complete 1 round of plasmapherises. Unfortunately, after Rebecca’s plasmapherises treatment, she started bleeding from her GI system again. We believe the plasmapherises has triggered her current GI issues and ask for prayers the bleeding stops very soon. The bleeding is significant, but as of this moment, not as severe as her massive hemorrhage post-surgery. So far we have not needed another transfusion which is a blessing given Rebecca’s lung status.

My favorite moment yesterday was when the surgical team surrounded Rebecca and discussed in detail why they felt Rebecca’s 32-stapled wound running down the full trunk of her body was not healing well.

They were debating between her steroid dosing, post-splenectomy body, inflammatory state, edema, severely elevated platelets, etc. etc.

Finally, Rebecca interrupted their confused train of thought by stating: “Maybe it is just because you keep cutting me in the exact same spot over and over….”

We all looked at each other, nodded our heads in agreement and then burst out laughing.

Yes, my child might be the smartest person in the room.

Sometimes we over-think. Over-think problems, over-think emotions, over-think our reality. And that over-thinking can cause over-stress.

Here is to making a complicated life a little less complicated. Our unexpected miracle for the day.

Thank you Lord.

Love to each of you,
C

A picture of Rebecca’s physical therapy, writing her new verse of the day before procedure yesterday.

Trapped in a Stairwell

We are recovering.

Slowly but surely, we are recovering. I love typing those words: WE ARE RECOVERING.

Yes, we are still in ICU. Yes, we are still battling pneumonia in both lungs. Yes, we are still on narcotic and sedation drips. Yes, we still have a gigantic healing road in front of us. But we are recovering. Rebecca smiles now, she is taking sips of fluids and working on minimal physical therapy.

WE ARE RECOVERING.

Thank you, thank you Lord.    

For 130 days from the Dallas hospital to the San Antonio hospital, friends have dropped off meals, allowing me to stay by Rebecca’s side. Most of the time, they bring 2 meals at a time – lunch and supper. Because of COVID, instead of coming to the room to visit, the meals are left in the hospital lobby to be delivered to our room.

Our friends did not stop with meals for just me though, they also started a project known as “meals for the Taylor boys”. Our family was without a stove for 6 months during the hailstorm renovation and our friends wanted to ensure a hot meal multiple times a week for all 3 of my boys.

During 130 days of hospitalization.

I have the best group of friends in the entire world and I dare anyone to challenge that statement…

It still astounds me how sacrificial people in our lives are – serving us day after day, week after week and month after month. They continue walking this difficult journey alongside us – even when they have no obligation. They carry us through our struggles by strengthening our reserves, feeding our bodies, and lifting our spirits. All from a respectfully safe, COVID social-distance. These friends and family teach me to love abundantly, regardless of a recipient’s ability to give-back. They teach me how to be a better person.    

This week was a little different though, I still had meals delivered, but with the new, stricter, COVID restrictions, getting the food up to the room required me to run to the lobby and pick it up myself. The lobby is approximately 3 minutes from the room to the front desk, give-or-take 30 seconds on elevator timing. There are times that 6-minute round trip feels like a lifetime – even with a nurse sitting by Rebecca’s side.

On this particular day, Rebecca was with her nurse and I ran to the lobby to pick up not only a large bag of Mexican food from my beautiful friend Dina Selva (who has delivered approximately 10 meals to me in the last couple of months alone) but also 2 large smoothies delivered at the same time. The GI doctors wanted to trial sips of an organic smoothie to help Rebecca wake up her dormant intestines.

I grabbed the Mexican food with my left hand and haphazardly propped the smoothie box in the corner of my right arm and ran to the sky-tower elevators only to find they were broken. That is right, all 6 elevators were shut-down.

Well, I just about panicked. And in my panicked state I ran back to the front desk clerk when the below scenario occurred:

Me: I need to get back to ICU immediately.

Clerk: I am sorry ma’am you will have to wait.

Me: How long do you anticipate the elevators not working?

Clerk: I am not sure, it could be all day?

Me (my voice high-pitched and cracking): All day???!!! I cannot wait all day! I have to get back up to my daughter. Please, you must help me get back to the 7th floor….

Clerk (seeing the desperate look in my eyes): Okay ma’am, I will use my badge to let you in the staff stairwell, but it is a long way up with what you are carrying. Don’t worry though, when you get to your floor, you will not need a badge to open the door.  

I was so happy I almost kissed the young clerk but thought against it because kissing with a mask would just be weird, so instead I thanked him profusely and with my heavy Mexican food bag and my already seeping-from-the-edge, precariously half-tilted Smoothies in the crook of my arm, I walked up. Flight after flight after flight after flight after flight after flight after flight. I tried calling the hospital room numerous times to inform them of my delay beyond my normal 6 minutes and yet the concrete stairwell prevented all service.

After the 4th straight flight, I stopped for a moment to catch my breath and decided two very important facts:

  1. I seriously need another iron infusion
  2. I am even more seriously out of shape.

I know that second statement is shocking seeing as though I have walked a good 150 to 250 steps faithfully every single day of the last 130 days. In fact, I decided I was so completely in shape I no longer needed my nifty Fitbit the very first week of hospitalization back in September. Especially after it beeped at me 150 times a day telling me I was an exercise loser by not getting my 1,000 steps in every 15 minutes.

My favorite Fitbit reminder though, was when I epically failed my minimum sleep requirement and it gave me tips on how to get better shut-eye: Sleep on a good mattress in a dark and quiet room without interruption. For some reason, loud and constantly beeping machines with bright lights and a hard, plastic couch were not on the good sleep habit list??? If there was a way for me to severely loathe an inanimate object, my Fitbit would be top of my list.

Despite my critical revelations, I continued my hike up the stairs, never seeing a soul, huffing and puffing so violently that while gasping for air, I almost sucked the mask completely into my lungs. At least a hospital is a good place to extract a mask from an asphyxiated lung…..

By the time I made it to the coveted 7th floor, I was seeing stars and not quite sure if the 7th floor sign was really a 7, a 9 or a 17. It certainly felt like a 17. I finally reached for the door only to find it was locked.

Yes, it was locked.

I immediately took back my thoughts at wanting to kiss the desk clerk and replaced them with thoughts of how to hurt him (don’t worry – I was far too tired to follow-though with my evil schemes).

I was trapped in a stairwell, all alone, without phone service and absolutely no ability to get out.

Bless.

At least I had food. I could survive for days on the amount of Mexican food Dina brought me. Unfortunately, I did lose half of the dripping Smoothies on the way up the stairs. I could already imagine the interesting conversations that would ensue from doctors looking at the pink drips, wondering what bleeding patient wondered up the staff-only stairs.

This was by far, the longest time I had been away from Rebecca and I felt a full-fledge panic attack fall upon me as I beat against the door over and over trying to get someone, anyone from the other side to let me out. Either no one heard me, or no one wanted to open the door to a crazy woman, but regardless, I was trapped.

For the first time in a long time, my world was quiet. It was just me, God, and my Mexican food (there wasn’t enough of the smoothies to count). And as I reveled in the complete, echoing silence, I talked to the Lord:

God, thank you for getting Rebecca through this week – she could have died at so many points, and yet, You continue to pull her through.

God, thank you for giving me endurance to make it this far.

God, thank you for my boys’ constant love and faithfulness.

God, thank you for the gift of Rebecca’s life.

God, thank you. Just thank you.

I was still. In the most unlikely of scenarios, God found a way for me to be still. And in that stillness, I knew, without a doubt, that He was God. My trapped-in-a-stairwell-event became my most unexpected miracle.  

After what felt like hours, and my fist bruised from the dent I made knocking so long, a woman with a tray opened the door for me. We were in a barren section of a staff hall and she said, “no one ever walks this way, you are lucky I heard you”.

I was lucky. Lucky my God found a way to bring me peace in the chaos.  

After thanking my rescuer, I ran through a series of hallways to Rebecca’s room panting as I entered. And you know what? Rebecca was doing just fine. She was smiling at the nurse as the nurse told her funny stories, distracting Rebecca from the pain. I was only a tad insulted Rebecca did not think to call the National Guard to come and find me. Rebecca just thought I needed a long-overdo break. Apparently, God did as well.

Love to each of you,

C

“Be still, and know that I am God,” Psalm 46:10.

Rebecca’s physical therapy assignment from her wonderful therapist Julie – stand and write a new verse on her ICU window every day. As hard as this simple task is, Rebecca has completed it – 4 days in a row!