Well, we are back in the hospital for the week with numerous planned procedures. Today, Rebecca underwent anesthesia to get her central lines placed. Tomorrow she will start the first of 3 plasmapheresis procedures to help abate her over-reactive neurological system. Each plasmapheresis treatment will have a one day break in between. Rebecca will also receive much-needed iron infusions.
This week we will also finally address Rebecca’s fistula. As a post-operative complication, Rebecca developed a tear/hole through her small intestines leading into her bladder. Because her fistula is in a part of the small intestines that is temporarily cut-off from her digestive system, we have time to make a strong surgical plan. Rebecca will have 2 different CT scans and numerous urology and colorectal surgery consults this week. Please pray for wisdom for all teams involved.
Rebecca was already informed by one consult that she will need another potentially significant portion of her intestines removed to fix this problem. I can tell right now you we almost passed out at the news.
I was seeing stars and desperately trying my best not to hit the floor while this doctor was talking. Rebecca straight up told the doctor she had no more intestines left to loose so surely they could find a different solution. We are obviously FERVENTLY praying this specialist is wrong. I mean, I would like my child not to be in the Guinness book of World Records for the shortest surviving intestinal track. We are fairly certain Rebecca already qualifies for survival with the most missing organs….obviously not a record anyone aspires to win.
We know the fistula is a serious problem but we are praying for the least invasive future surgery as possible (and by future we hope months away, not days). We humbly ask for prayers from you as well.
Got out of procedure late – very successful! No one in the world that we or Patel know of has ever done this procedure using this technique before. Absolutely brilliant and the least intrusive as possible on Rebecca. Stent safely placed as well. Thankful for your prayers.
Surgery today. Please pray the multiple doctor teams can break through Rebecca’s scar tissue without causing further damage to her intestines. This is the first time the surgeons have attempted this particular procedure and have spent the last week crafting a very specific and unique plan.
Thank you for loving us so well – we love you right back, C
Sometimes things don’t go the way we anticipate. Wednesday was one of those days.
To be honest, I delayed updating Rebecca’s status because my mind refused to fully process another problem.
What “should” have been a short, fairly simple procedure dilating Rebecca’s anastomosis site, ended up a full-day event in the OR. In the span of a mere 3 weeks, Rebecca’s open surgical connection completely scarred down. Dr. Patel spent HOURS trying everything he could, even going in through Rebecca’s stoma site to break through the scar tissue. Finally, at the risk of puncturing through Rebecca’s small intestines, Patel was forced to end the procedure.
Obviously, we are all greatly disappointed at this unexpected complication – especially Dr. Patel. We also discovered during the procedure that Rebecca DOES have a post-surgery fistula (a hole between her small intestines that leads into her bladder).
Because of these serious complications, Rebecca’s surgical team is regrouping to form another plan.
Although these are critical problems, the fistula/blockage are in the portion of Rebecca’s intestines that are cut off from food so we have time to come up with a strong plan as opposed to rushing into a last-minute major surgery.
This week is Spring Break and most of Rebecca’s doctors are out of town so we are preparing for a procedure the week of March 15 which will include 3 surgical teams working on Rebecca at the same time.
In the meantime, the Taylor family is concentrating on spending family time out of the hospital while the boys are off school. We plan to laugh often and live fully – our unexpected miracle. We will deal with all of our medical complications soon enough.
Thank you for your love and prayers. Love to each of you, C
Sorry for the delay in updates – we are busy managing life outside of the hospital and the physical, emotional and mental challenges that come with this move.
Tomorrow, Wednesday, we will check back into the hospital for what should be a short procedure to stretch out Rebecca’s surgical anastomosis. Rebecca still has blood backing up in her intestines so it is necessary to dilate her strictured surgical site for relief at intestinal pressure. If all goes well, we hope to go home for another reprieve before returning to the hospital for a longer stay on March 15 to finish treatments we delayed by coming home early.
Prayers for Rebecca’s procedure are greatly appreciated.
One of the first questions people ask me is how our house fared in the snow storms when we first returned home. We were without power for 1 day and without water for 5. No, we were not prepared – our focus was solely on Rebecca’s hospital discharge.
The boys continually shoveled snow into our bathtubs all week while we then heated the snow up in buckets by the fire. We lit stoves with matches, got creative with meals in a pantry I haven’t purchased food in for 7 months. We walked around with candles while bundled with blankets (which is a good thing we were covered in layers because we could not take showers for 6 days!). Pharmacy could not deliver imperative meds all week which sent me scavenging through our home supplies, piecing medications together and praying the combinations worked. Food was interesting, heat was sub-par, water was non-existent and medical management was a tad dangerous, but I cherished EVERY moment. My soul was content to be home in any state – who cares that we could not flush a toilet.
School and work were impossible so our days were spent huddled by the fire together. And my heart sang with praise as I watched the kids together in the same room while simultaneously staring at the beauty God blanketed around us. And oh, what beauty.
It was hard for me to hear the onslaught of complaints coming from people across the state who survived. I wanted to say:
“Hold on, when this freeze is over you will go back to your normal lives with a hope-chest full of memories.”
Because, if you survived, you have hope. Your house may be in shambles but there is always a promise to rebuild. If we are alive, there is always hope to rebuild – a broken home, a broken relationship, a broken body, a broken spirit….
I will take home with my family in the middle of a blizzard without power and water any day of the year as long as we are together.
Thank you Lord for the unexpected miracle of a freeze.
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….
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.
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.
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.
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.