When my 25-year-old daughter, Heather, first complained of a blinding headache, I wasn’t terribly concerned. I had been a sufferer of Cluster Headaches for years and knew that a headache does not automatically translate to ‘I have a brain tumor and only hours left to live.’ I simply assumed that I had passed on those bad headache genes to my youngest and gave her all the home remedy advice that had worked for me in the past.
However, nothing seemed effective for her. The headache would hit with blinding speed, last for hours and then finally ease allowing my daughter to function somewhat normally. One particularly painful day, I received a call from Heather asking me to drive her to the emergency room as she felt her head was exploding, vision was blurred, sounds were painful, altogether a miserable day.
After sitting in the ER waiting room for over an hour, Heather was ready to give up and go back home. The bright florescent lights and loud hospital noises were becoming more and more unbearable for her. At last someone came for her, listened to the description of her pain, took her vitals and again left us to wait. At least this time we could dim the lights and pull the curtain to cut out a little bit of the noise.
The wait behind the thin curtain was a bit shorter than the one in the crowded waiting room but not much. A doctor finally appeared, looking concerned and over-worked. The first order of business, he announced, would be a CT scan. Heather was immediately on alert with dollar signs flashing amidst the bright lights. She asked the doctor if he could just give her something for the pain as she was without health insurance and a CT scan sounded like a pretty expensive procedure.
The elderly doctor stood firm, insisting that a CT scan be performed and the worry about payment be set aside. After all there is not a price tag on one’s health. Heather received an injection to help with the pain and soon was whisked away for the scan.
Again the waiting began, this time for the results of the CT scan and to find out what test would be next. The doctor had mentioned a spinal tap and Heather was not at all thrilled with the idea of a foot-long needle being inserted into her back. The emergency room seemed quieter as the minutes ticked slowly around the clock hanging on the wall just outside the curtain.
Suddenly there was a flurry of activity. Nurses appeared in mass with the doctor hurrying along behind them. At first it was difficult to understand what they were talking about. I heard the work ‘aneurism’ and had no idea what that could mean. But it seemed there was no time for lengthy explanations. There was a bleed in Heather’s brain which could bring about instant death or a severe stroke at any moment. A medical helicopter had been ordered to fly her to a bigger hospital in Ann Arbor. Even though the new hospital was less than 10 miles away, driving there in an ambulance was not even considered.
As if by magic the small room suddenly filled with ‘helicopter people’ getting ready to transfer Heather to a back board for transport those few miles. It seemed that everyone was asking different questions at the same time. I heard a young woman ask Heather, as she started an IV, “Do you have any allergies?” “Peanuts,” was Heather’s quick reply. “Ok,” the young woman quipped with a smile, “We promise to not serve peanuts on this flight.” With that, they were off and I was suddenly standing alone.
As if stuck by lightning, I flew into action. I needed to get to the next hospital. I needed to call Heather’s dad as he was home waiting for word of her visit to the E.R. and of course I should call her boyfriend who was ‘up north’ for the week-end. The month of March, 2004 was certainly coming in like a lion, at least for the Chandler family. There was no time to go back home to pick up my husband but he was quick to assure me that he was on his way and would meet me in Ann Arbor. The boyfriend said he was already on his way south but was still a couple of hours away and would keep in touch as he also made his way to the hospital.
Once I arrived at St. Joseph Hospital in Ann Arbor, I found that Heather had already been taken in for yet more tests. Her father arrived and along with Heather we met with the doctor. A vessel in her brain was ‘leaking’ blood. Should it burst the consequences would be dire. It was Sunday evening and they were trying to locate a brain surgeon for immediate surgery.
I think at this point we were all pretty numb. The process of forming a thought was just too difficult as the wait continued into the evening. Just as the doctor again came to us with news, Heather’s boyfriend came rushing into the examining room. We were advised that the best neurosurgeon for Heather’s situation had been located but he practiced out of Ford Hospital in Detroit. Heather would need to be transferred there immediately. It was felt by the doctors that she was stable enough to be taken via ambulance the 50 miles to Detroit. So again, we prepared to leave one medical institution for another.
The three of us watched in a daze as Heather was readied and then loaded into an ambulance. Once she was settled we sprinted to our car to follow along. We had not even gotten out of Ann Arbor when the ambulance pulled into an empty store parking lot and stopped. ‘Oh dear’, we all thought, “Something has happened and this can’t be good.”
As we pulled in behind, the driver of the ambulance came trotting back to speak to us. He said that Heather seemed to be having a reaction to a medication and they would be taking her back to the Ann Arbor hospital as they weren't comfortable continuing with her in her present condition. On automatic pilot, we started back the way we came wondering what in the world could possibly happen next.
As we approached the hospital we realized that Heather had not been taken out of the ambulance and was being treated without moving her back inside. It was several minutes, which of course seemed like hours, that we stood quietly in the darkness waiting for an update. At last the driver told us that she was again stable and they would be leaving for Henry Ford Hospital in Detroit. They would be driving with lights and sirens and we were not to try to keep up with them. The driver assured us that once they delivered Heather they would wait for us and direct us to her treatment room. So once more we left Ann Arbor for I-94 and the 50 mile trip to Detroit.
True to his word, the ambulance driver was waiting for us and walked us through the emergency department to a treatment room where Heather seemed to be in an argument with a doctor. The doctor introduced himself as the neurosurgeon and explained that emergency brain surgery was needed right away but Heather was hesitate to sign the consent form. Even though she was heavily drugged, she had stayed awake and alert. She was insisting that she only came in for a headache, that she felt better, and that NO, she did not want anyone to shave her head and start poking around in her brain. The ‘discussion’ continued back and forth between heather and the doctor for some time before she finally reluctantly scribbled her name across the form. As soon as the pen left the paper, everyone flew into action.
The next argument began when a nurse came into the room with a catheter. Heather took one look and loudly announced, “Oh no, don’t think you’re going to put that thing in now. You can just wait until I’m asleep or forget it altogether. The tone and volume was enough to convince the nurse to quickly back out of the room and let Heather be wheeled to the operating room without a catheter.
It was exactly midnight when suddenly all activity ceased. The waiting room was deadly quiet. It seemed that everything had happened so fast and very little had been explained to us. We sat in the dim lights bewildered, feeling as if we had just come through a huge battle and were facing the quiet before the storm. Could there possibly be any more surprises in store?
A nurse appeared out of the stillness, sat down beside us and said that she would be keeping us informed as to the progress of the surgery that was to take approximately eight hours. She went on to go over what should be the expected results once surgery was successfully completed. She told us that Heather would be taken straight to the Intensive Care Unit of the hospital and would probably spend at least 14 days there. Once she was well enough to be moved to the next ‘step up’ room, physical and occupational therapy would begin and it was very probable that Heather would remain for another 30 days with them before making plans to transition to another facility or perhaps, of all went extremely well, to her own home with in-home care.
All of this caught me completely by surprise. The idea that Heather could lose her ability to do every-day things never entered my mind. Now the possibility of her having to learn everything from speech, to feeding herself, to walking became a strong possibility. I told myself that the professionals were just trying to prepare us for the worse possible outcome. I also told myself that if that was the case, we’d cross that bridge when we came to it but for now, I would settle back and wait, pray, and be confident that all would be well in the end.
The night crawled by slowly. No one slept. We sipped coffee and whispered our conversations as if afraid to wake those sleeping somewhere nearby. At last, light streamed through the windows in the waiting room and as a new day began, Heather’s nurse suddenly appeared by our side to let us know that everything went well. Heather had been taken to ICU and we would be able to see her very soon. I dared not ask the prognosis. I didn’t want to face any bad news. I just wanted to see my youngest child.
True to her word, it was just a few minutes before we were shown to Heather’s room. Her head of completely covered with bandages except the hair that had not been shaved was gathered into a braided pony tail and was sticking straight out of the top of those thick bandages. She was awake, alert, and knew where she was, what had happened, and who we were, so we were encouraged that at least that part of her memory was intact.
Heather improved much more quickly than the doctors expected, even though she was not a particularly ‘good’ patient. Her hearing and sense of smell were very intense. She kept insisting that we were yelling at her when we were merely talking in a normal voice. We were constantly whispering to her in order to keep our voices at a comfortable level for her.
She could smell cookies before I took them out of my purse. One time I thought she was sleeping so I gave some cookies to her nurse. When her boyfriend arrived later she told him, “Mom gave the nurse cookies and didn’t even offer me one. How mean is that?” Another time a nurse came into her room in the wee hours of the morning to draw blood. Heather would have none of it and told her to get out – that there was no reason that blood had to be taken in the middle of the night – to come back in the morning. The nurse offered no argument and simply backed out of the room. For the rest of her stay, blood was NEVER drawn in the middle of the night.
Heather had very little appetite and soon became tired of listening to each person tell her how important it was for her to eat and regain her strength, so she devised a plan. She would remove the top from her water cup, load it up with that wonderful hospital food that patients receive, and replace the lid. A casual glance would bring praise that she finished her meal.
In only four days Heather was moved from the ICU unit to a private room in the main section of the hospital. Three days later the doctors declared her well enough to go home. She still has some issues with her hearing but he felt that sensitivity would fade in time. She had made a miraculous recovery with no need for physical or occupational therapy.
Everyone was thrilled beyond belief with her recovery. Ten days later when she went back to have the staples removed from the incision that started at her hairline in the middle of her forehead curving around and ending just behind her left ear, the nurse attending Heather said that in her 25 years of nursing she had never removed staples from a patient who had had this particular surgery and GONE HOME. Every single patient in her experience was still hospitalized; some still receiving intensive care when staples were removed.
Now for what should have been an extremely happy ending – but wasn’t quite. The astounding medical bills began to arrive. If you remember when we began Heather was hesitant to have the very first test as she was without insurance. The business office helped her apply to different avenues of assistance but in each instance the answer was no. The two main reasons – she was not a single mother with children dependent upon her and the treatment/surgery did not leave her disabled. So because she recovered and did not have kids, she was on her own with a mountain of debt that, in her lifetimeshe would never be able to pay. However she was healthy and you can’t put a price on your health.
As I put these words to paper, it is ten years later. Heather has married, is living near me in Florida and has no after effects. I count her as one of my greatest blessings and every time I see her I marvel at her recovery. She was born on Valentine Day and at one time I called her my valentine but in March of 2004, she became my miracle.