Reflections from New York

I am writing you from our international terminal at JFK airport in New York. We have been in NY City since last Thursday and have had a wonderful time so far. We depart this afternoon for Athens, Greece where we will be for almost a week and then we fly into Tel Aviv where we will spend almost another week visiting the Holy Land. This trip has been planned since before my health deteriorated but after much prayer and consultations with the doctors (and investing in travel insurance), we have decided to make the trip. I would covet your prayers for health, and especially supernatural energy to combat my chronic fatigue. I did wake up yesterday with a sore throat and head cold so your prayers for quick resolution of this would be coveted as well. My last health prayer request would be for my colonic motility which often becomes even more of an issue with travel and can become quite problematic.

On a reflective note, I was also in NY nine years ago this day, hospitalized again after complications from my brain surgery. As I wrote about in my earlier post "Reflections", Steve and I had returned home after both being discharged finally after my anesthesia complications and his severe internal blood loss. Four weeks after returning home, I experienced searing left-sided head pain and lost all feeling on the left side of my head. Fearing a stroke, I was rushed to UT Hospital where MRIs revealed my top cervical bone had subluxed (fallen to the side) onto the second cervical bone.

The subluxation crushed nerves which innervated my scalp but it was also compressing my vertebral artery and was millimeters away from damaging my spinal cord. The trauma surgeons at UT were unwilling to do the needed fusion surgery due to the fact that I still had stitches in the back of my throat where the NY neurosurgeons had accessed my brainstem 4 weeks earlier. Unable to secure a medical flight back to NY, we were left to secure last minute commercial tickets to return to NY for immediate surgery. I was secured in a non-invasive halo and many prayers were lifted up that it would hold the C1 off of my spinal cord and crucial arteries. I was loaded by wheelchair and the pilot greeted me at the plane door. I will never forget our conversation! I explained the millimeters that separated me from complete paralysis and possible death and asked for the smoothest flight and especially landing he had ever accomplished in his career. I saw the blood drain from his face and with the most gusto smile he could muster, he promised me I was in good hands. We encountered no turbulence although surrounded by thunderstorms and the landing in NY was more than perfect! I was seated in the bulkhead and I will never forget seeing the cockpit door open and the pilot emerge. We made instant eye contact and I gave him the thumbs up sign and put my hand over my heart. I watched as tears welled up in his eyes and he returned the gesture and place his hand over his heart and then returned to the cockpit. God gave me an earthly angel that day but I would soon find that He had placed more on the journey.

We had a lengthy anesthesia consult due to my previous complications resulting in me being awake on the inside but

paralyzed and unable to communicate on the outside. The decision was made to take me awake to the operating room and intubate me while awake (I do not recommend this and will never allow it to be done to me again!) and then use non-paralytics in the anesthesia regimen and also wake me up half-way through the surgery to reduce the time I was "under." The plan worked in the beginning but when the surgery was complete, a final x-ray was done to confirm the cervical fusion and the placement of the wires that were wrapped around my top cervical bones and the images were devastating to the surgical team. The x-rays showed that a wire had broken loose and was pressing against my spinal cord. I was already stitched up and ready to transport to the recovery room. The surgery had to essentially start over from the beginning with a new incision, unpacking all of the bone graft material for the fusion, and finally re-wiring the cervical bones. The surgery lasted over 16 hours and we would soon find that the anesthesia complications had occurred again. Again, I woke up like normal in recovery but was unable to communicate with the outside world. Being a contingency planner, I had planned this time for such an event. I had instructed the surgical team to inform me of the time hourly, inform me of my condition, and manage my pain aggressively and most importantly -- not to disconnect the ventilator because I was alive inside! As I began to wake up, I was aware of my doctors talking to me. They told me about the surgery, the time, the plan. My hubby came and talked to me and then my family. And then you won't believe -- Janie was there! The Christian nurse from my first surgery that prayed and sang over me. She had been called in on an overtime shift to take care of my case. I was comforted again by her prayers. I must have slept some but then was awakened by a touch to my arm; it was the lead neurosurgeon talking to me. It was now the middle of the night and things had quieted down. He had stayed to oversee me care once again. Then he began to read, "It was the best of times,

it was the worst of times." He proceeded over the next many hours until dawn to read to me the novel War and Peace. After several days, once again I began to be able to breathe on my own and my muscles slowly became unparalyzed. However, this time I was in excruciating pain.

The fusion I had endured required that I be secured by a "halo" that was screwed into my skull in four places. Unfortunately, one of the screw points went straight through a branch of the nerve that was crushed when C1 subluxed originally. The pain when I moved felt like someone pouring boiling water on the side of my head. I would scream in excruciating pain whenever I moved the slightest. After many exhausting hours of moving an inch at a time, I was finally settled into the neuro ICU bed. There was no doubt that the halo had to be adjusted but any adjustments took the chance of destabilizing the fusion. Great care would have to be taken to make just millimeters of adjustment. This is a long story as it spanned three days of working on adjusting the halo, with my haunting screams echoing through the floor. The screws in my skull were mounted to poles that attached to a vest that encompassed my upper body. There had been so much torque applied to the screws that I was contorted in the vest and my left arm had lost blood flow and all sensation. We were at a critical point in the adjustments. I had vomited several times from the pain and had soaked the lambs-wool lined chest vest. It was over 90 degrees in NY and this hospital did not have air-conditioning. You can begin to imagine the desperation I was feeling. Steve stayed present in all the adjustments waiting for an opportunity to clean the vomit from the vest. During a break in the adjustments, Steve stood up on the hospital bed to get a "birds-eye" view of the halo and the vest. He had sensed my desperation and my quickly depleting resolve to persevere through this difficult, excruciating trial. We had sent out word for prayers from many as we were reaching critical times to get the halo adjusted and restore the function of my left arm. The pain had been excruciating for 3 days and I was exhausted and for the first time in this journey; I prayed that I would die. I so wanted to experience the glory of heaven and be free from this tortuous, unending pain. The Lord heard the pleas of many that

night. Steve saw something in the angles of the halo and quickly jumped off the bed and rushed to the waiting room to talk to my dad, the engineer. My dad and Steve returned the room and Steve began explaining to my dad how "this angle didn't match that angle and we adjusted this and that, my left arm should be free, etc." My dad examined his theory and when the neurosurgeons returned to the room, my dad explained everything to them. They listened to my dad and when he finished explaining, they studied the situation and in a moment I will never forget as long as I live; they handed Steve and my dad the wrenches to make the final adjustments that would take away my pain. I am sure my dad never got a degree in engineering with the idea that it would one day be used to take away the pain of his daughter. In the days following the ultimate intervention for my life and pain, I became aware of this life application. We are all in pain at some point in our lives and we need an adjustment. Our heavenly Father is waiting for us to give over the wrench and let him make the adjustment that will alleviate our pain and once again restore our hope. That will look differently for all of us but it requires giving up control of our circumstances and letting our Heavenly Father take our pain.

I was soon discharged after my halo was stabilized and we awaited the 4 months it would take the fusion to permanently fuse. It successfully fused after 16 weeks and we returned to NY in December of 2000 to have the halo removed. My health issues had resolved and the future looked bright. I had once again escaped a precarious brush with death. In my youthful maturity, it never occurred to me that my life would hang in the balance again in this lifetime. Musings for another posting. I should close for now as our departure time is nearing.

I had asked prayers for some doctor appointments and tests in the last few weeks. Those tests and appointments went well and we have some directions to head based on the results. Most resulted in further referrals for specialized testing including a muscle biopsy to take place upon our return. My neuro exam was extensive and revealed problems associated with lower brainstem compression as well as suspicion of a metabolic or mitochondrial myopathy. Such myopathies are rare, occurring in less than 10,000 individuals worldwide and therefore, treatment is virtually non-existent for these conditions. The confirmation of brainstem compression causes us to reevaluate possible brain surgery in NY again. I also will receive further evaluation from U of W for placement of a cardiac pacemaker and/or ablation procedures in attempt to control my erratic heart rate. These procedures will however do nothing to control my volatile swings in blood pressure. My doctors stated that I appear to suffer from the most severe form of autonomic dysfunction they had seen in their careers. This leaves us without many options for treatment but we will await the results of further testing. I will post more details of upcoming tests upon our return. I do covet your prayers for wisdom as we pursue further testing and make decisions regarding interventional treatments.

Sorry for the long post but it was good to reflect on two times spent in the same city. Thank you for your prayers for our travels. My mom will post should anything of significance occur on our trip needing your prayers.

(Thanks mom!) I look forward to posting when we arrive back in the USA in a couple of weeks!

Much love,

Lee (and Steve)

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Messages

Sandi Henry

August 24, 2009, 11:39 PM

Whew, you've come a long way baby! We're praying that you and Steve have a wonderful trip and for wisdom about your medical decisions. Can't wait to hear all about your trip. Take lots of pictures! love, sandi

Steve Braden

August 25, 2009, 12:11 AM

I am so glad that prayers are not only heard "international" but around the world. We are praying that your trip will be a time of comfort to both of you. Hugs and love. Uncle Steve and Aunt Helen

Bethany Mincey

August 25, 2009, 12:51 PM

Lee and Steve, I am so excited for you about your trip to the Holy Land. I have placed a sticky note on my computer that has your name on it so I will remember to pray for you several times during the day. I look forward to hearing about this journey! Love, Bethany

Betsy Ramsey

August 25, 2009, 1:48 PM

The same sun that will shine on you in Greece and Israel is the same sun that is shining outside of my window. What a awesome God we serve...the Lord of the universe. This is the ONE I pray to on your behalf....that this will be the most amazing trip ever for you and Steve. You both continue to inspire us all. Love, Betsy

debbie Mathews

August 25, 2009, 5:55 PM

I'll be praying for you. Have a great trip! Deb Mathews

Charlotte Clark

August 26, 2009, 9:42 PM

Lee and Steve, Have a wonderful time and remember "You are Blessed." Cut and paste the link below into your browser. I hope it makes you smile. Love, Charlotte and Charlie

https://www.youtube.com/watch?v=H17edn_RZoY

Susan Jenkinson

August 26, 2009, 11:23 PM

I am so excited to hear you are healthy enough for this trip of a lifetime. May God continue to bless you and suround you with a hedge of protection on your journey. My prayers are with you. GOD IS GOOD!!!