Shannon's Story: Shannon's Last Minute Miracles

Most family, friends and Twitter friends are aware that Shannon has been gravely ill for two months. Since early October, Shannon has been hospitalized three times. Each time she was in ICU. In October it was discovered that Shannon had suffered three small strokes. This brought her to a total of twelve strokes in her lifetime. Each hospitalization presented us with dangerous life and death situations as her chemistries flew totally out of whack and infections set in.

What most are not aware of is that during her last hospitalizations, Shannon was within hours of going home to meet the Lord not once, but twice. When she was taken to the emergency room, she had a temperature of 106.7 degrees. The doctor was visually shaken. He immediately wanted to know if I had a ‘do not resuscitate order’ for her. Her pulse was very fast, but her blood pressure was very low. She was completely dehydrated due to the fever. She had a very serious infection that was causing every chemistry to go helter kelter. To make things worst her veins were almost impossible to find. This required three attempts with an ultrasound to place a main line in her neck. The hospital staff was so certain she would not make it out of the emergency room alive; they decided not to put any other patients in the room she was in.

Kaiser Hospital, the hospital the ambulance took Shannon, was the nearest hospital to us; but Shannon is a patient of UCSF Hospital in San Francisco 15 miles away. Kaiser & UCSF felt she was not safe to transfer because of her low blood pressure, so after 15 hours in Kaiser’s emergency room, Shannon was admitted to Kaiser’s ICU unit.

In ICU the rush was on to keep the fevers down, pump fluid and medications into her to bring her blood pressure up, and drip antibiotics into her to ward off the infection. For three days it was very touch and go. At 4’oclock am on the fourth day, I received a call from the ICU nurse to come immediately. Shannon had taken a turn for the worst. She had been ‘fish’ breathing (breathing, very rapidly and hard with pursed lips) for hours. Shannon’s lungs were full of fluid due to the large amount of fluids being administered to her for her blood pressure.

I requested the doctors to stop the fluids and one of her medications as she was now visually swollen with fluid. Shannon has a very rare diagnosis called Diabetes Inspetisus. It is so rare that most doctors have never cared for a patient with this disease. This condition has nothing to do with sugar diabetes. It was caused by her brain tumor and has to do with sodium control. When our sodium get too high or too low it can be fatal. She takes a medication that does the opposite of a diuretic. It makes her hold fluid. Without it she would urinate nonstop and little fluid would get to her cells, causing her to become very dehydrated even when drinking gallons of water. One way low blood pressure is treated is to flood the patient with fluid. In Shannon’s case, flooding her with fluid while on this medication was causing her to hold too much fluid. Her blood pressure began to improve, but her body was filling up with too much fluid including her lungs.

When the doctor came in later in the morning, I was once again asked if I had a ‘do not resuscitate order’. I anxiously asked her if she was not expecting Shannon to make it. Her response was, “Well, she has been breathing like this for 30 hours now. Most patients stop breathing within about 24 hours. They just get tired and stop.” Hearing this I begged her to stop the medication and IV fluid. I was willing to take the risk that her blood pressure might drop. I just knew if she had any chance at all something different had to happen. She reluctantly consented. She did not believe Shannon would make it more than a few more hours.

With that I left the hospital and sat in my car in the parking lot. I needed to think. I needed to pray. I needed to maybe plan a funeral. I decided to call my brother, Dan, to let him know that Shannon might not make it. He has always been very supportive and spoke of all the wonderful times Shannon has had. He is also a realist. He pointed out that I did not want her to suffer endlessly and how quality of life was more important that quantity of life. He was right; Shannon’s quality of life has suffered greatly in the last few years. She was now blind and without speech. Her diabetes insepitusis was getting harder to control. She had had five strokes in the last two years. She had experienced so many losses and sufferings. I wished she could tell me how she felt about all this, but she could not speak.

After hanging up, I sat in my car trying to plan her funeral and transporting her back to Nevada to be buried in our family’s grave plot. I tried to plan, but the planning made me feel like I was giving up on her. Worst yet, I felt like I was not trusting God to determine the number of her days. At this point I had a flashback to 1981, when I had a similar call from UCSF ICU. Shannon had had a double stroke and had been seizing for three days. Once again at 4 o’clock in the morning, I received a call to come quickly to the hospital. When I arrived, the doctors wanted to know if I wanted to put Shannon on a respirator. She had spent several hours where she would stop breathing and then start again. I could tell they did not expect her to pull through. I asked her doctors, “What do you hope will happen by putting her on a respirator?” One doctor honestly replied, “We would be hoping for a miracle.” At that point, I made the hardest decision of my life, and replied, “If what Shannon needs is a miracle, then she can have a miracle without a ventilator.” I knew that miracles were only performed by God. I left the hospital almost immediately. I had to get home and pray.

At home, I cried my heart out to God and totally released my daughter to his care and providence. After several hours of agonizing prayer, I concluded with, “Lord, I know you love my daughter more than I could ever love her. I do not feel worthy that You would answer my prayer, but I trust You to do the highest and best for my daughter. Whether You heal her or whether You take her, I know You are doing it in Your love for her. I completely release her into Your care.” With that I washed my face and returned to the hospital. Shannon continued to start and stop breathing for two more days. She remained in a coma for 28 days. She had broken her left hip, when she fell from the stroke, which could not be operated on until she came out of the coma. Each day she very slowly improved. This was an early lesson for both of us in God’s ability and wiliness to bring us through.

This flashback renewed my confidence in God. I once again committed Shannon’s highest and best, which I had made 28 years ago, into his loving hands. I then returned to Shannon’s room to find her breathing a little better. Over the next week, she slowly improved. After, 10 days in ICU, Kaiser decided it was now safe to transfer Shannon to UCSF, where they were more familiar with her history. After 5 days at UCSF, Shannon was released to come home.

Shannon in 2001 when she could still see, speak, and sign.

Since Shannon has been home, she has had a few incidences where I feared she might have to return to the hospital. Due to the high fevers, Shannon has eight bedsores. Because of this we have to turn her every two hours. The good news is they are healing and she is once again improving day by day. Day by day I thank God for even the smallest of blessings. It might be as little as not as much redness on a sore or a smile when I rub Shannon’s cheek.

“O satisfy us early with thy mercy; that we may rejoice and be glad all our days” Psalm 90:14. 
God shows for his mercy daily toward Shannon and myself, and I praise him daily. I thank him for small advances; I thank him for friends, family and all their prayers. I thank him that He loves my daughter more than I ever could and that only He knows the number of her days. I therefore I will thank Him daily for each moment we have together this side of heaven. I thank Him for His miracles, both big and small. His greatest miracle is His love for all of us. He is awesome and worth to be praised.

The Comeback Queen Is Home

Shannon is back home and recovering well. Shannon’s favorite sign is the OK sign, which she greeted me with the day before she was discharged from the hospital. She is in great spirits and trying to talk up a storm. We want to thank all of you for your prayers and encouragement during her recent hospitalization. We have a visiting nurse, who will be following her for a few weeks, that will do blood draws and labs for us. Things are getting back to normal, so I hope to resume my blogging and twittering; or maybe I’ll just twiddle my thumbs and listen to the birds sing outside my door.

Shannon’s other favorite sign is the I Love You sign. If you were here, I know she would be waving this sign to all of you for your love towards her.

My Comeback Queen

Writing is a strange thing. Sometimes it is pure joy and other times it is pure torture. I seem to do my best writing in both of those states. It’s the blah times of life that writing seems most difficult for me. I cannot say that I have had writer’s block for the past few weeks, as I have hundreds of topics I would like to write about. It’s just in the blah times; I have no enthusiasm, and therefore figure anything I write will be dull to my reader as well.

Yesterday, my daughter, Shannon, was hospitalized for the 100^th plus time in the last 30 years. For those of you that don’t know about my daughter, let be briefly explain. Shannon was a normal healthy child until age eleven, when she was diagnosed with a brain tumor. Although she underwent an eleven-hour surgery, the surgeons were not able to remove the tumor. They therefore radiated 80% of her brain. This shrunk the tumor down, but over the years a side effect of the radiation has caused her to have nine strokes. Other side affects of the tumor and radiation where numerous diagnoses of diabetes insepitus (very rare), sugar diabetes, osteoporosis, high triglycerides, a condition called panhypopit-where the pituitary gland was knocked out and requires hormone replacement.

Over the years Shannon has broken many bones due to the osteoporosis including both hips. She is now full of arthritis, but seldom complains. She has been comatose for as long as 28 day on seven occasions. She has lost her speech four different times. Following a stroke about five years ago, she did not regain her speech. Two years ago she lost the sight in her right eye, and then in November 2008, she lost the sight in her left eye after her last stroke. She is now totally blind. Two months ago Shannon’s hips became too painful to walk on, so she has stopped walking. Because of the strokes effect on her swallowing, she is now fed with a g-tube in her stomach. We constantly fight the battle of keeping her sodium and sugars in balance.

Most people cannot believe that Shannon is forty years old, because she looks like she is about 14. She stopped growing at age eleven. Because she did not go through puberty, she still looks almost the same as she did thirty years ago. I call Shannon my “Comeback Queen”, because no matter how hopeless the doctors say her prognosis is, no matter how sick, no matter what she has to go through-She ALWAYS comes back.

For the last week Shannon had been slowly deteriorating in health. She often goes up and down. Sometimes she pulls out at home, and at other times, she needs to be hospitalized. It is in the times of not knowing that my blahs seem to set in the most. It is like treading water, where one neither goes forward or backwards, but one just stays in place, trying to keep ones head above water. When I left the hospital last night, I felt encouraged. I believe we are once again swimming forward, and Shannon is in her comeback mode. She once again is going to retain her “Comeback Queen” title.