The Nightmare of Lynda's Stroke

We left Batesville, Mississippi headed for Magee, Mississippi with several things going through our minds.  We thought this seizure was going to be like the others.  We were also planning to remove her from Millcreek since we had an expert confirm our suspicions that she was not being taken care of properly.  

 Nothing, however could have prepared us for what we found. 

 From the minute we walked into the Magee Hospital, I felt like I was taking a trip back in time.  The hospital was old.  The rooms were small and didn’t have bathrooms in the patient’s rooms.  When we asked to see Lynda Smith the nurses seemed to be hesitant to direct us to her room. Then we were actually taken to a public bathroom in the hall. This is where we found Lynda in a bed that had been pushed into the bathroom. It was a small public bathroom that normally was shared by several of the patients.  So small the door wouldn’t close.

 

 I was horrified.  I felt like I had walked into a scene out of a bad black and white movie about institutions and hospitals in the 1940’s.   I actually see everything that happened from that moment in black and white and a sort of distorted tunnel vision. Much of the early scenes are played in slow motion.    How could this hospital be so full that they had no room for my ten year old daughter?  We found quickly that there was no shortage of available rooms.  When we asked for a real hospital room, one became available immediately.  In fact, there were several available rooms.   

In reality she  should have been in the Intensive Care Unit but they obviously didn’t really value her life at all.

  I prayed that I would wake up and this would just be another bad dream. I usually dreamed in color but this dream was totally portrayed in black and white and nightmarishly realistic.  Surely I would wake up soon.  But I was awake and I was actually living this nightmare along with Lynda.

When we arrived in Magee, it had been several hours since the seizure was discovered, longer since it actually began and going on eight hours since we had been called and Lynda was hospitalized.  I noticed immediately that she was still having small seizures and that her eyes were turned and fixed to one side.  No doctor recognized that she was having seizures.  Her right side was obviously paralyzed although the doctors told me it was just the massive amounts of medication used to stop the seizures.  I knew differently.  Her right hand was already beginning to curl into a closed fist with her thumb tucked in between the first two fingers.  There was clearly something terribly wrong but no one but Larry and I recognized it and we couldn’t get anyone else to believe us.  We felt like we were in a glass bubble;  Larry, Lynda and I.  It was as if we were talking to the figures dressed as doctors and nurses who moved around us but they were ignoring us.  Maybe they couldn’t see us. Maybe it was a dream after all.

Finally someone spoke and the information we pieced together painted the picture.  Lynda had pneumonia (although I had called the day before the seizure and was told she didn’t even have a cold).  She had a seizure in the middle of the night;  no one found her until 6:30 A.M. Instead of transporting her to the emergency room immediately as they agreed, they called a nurse at home who came down to the facility, took her temperature finding it to be 106+ and then called the ambulance who transported her to the hospital,  All of it was too late.  The little body and brain couldn’t take any more insult and injury.

Seven years and one day from the day Lynda bounced into our lives, she suffered a massive seizure and stroke, paralyzing her on the right side of her body.  It forever changed the child we knew to someone who couldn’t hold her head up, couldn’t suck her thumb and who didn’t recognize her Nana anymore.  I asked them what medications she was on and found that she wasn’t receiving her clonopin which was the one drug out of the three she took that stopped the focal seizures she was still experiencing.  I asked why they weren’t giving her clonopin and was told it didn’t come in any form except pills which she obviously couldn’t swallow.  I called our pediatric neurologist Dr. Robert M. Boehm at LeBonheur and quickly explained the situation to him, my fears of paralysis and the continuing seizures.  He told me to tell the doctors to give her clonopin pills rectally and to keep him informed about her vitals and progress.

            We relayed the information on to the Magee doctors although they were not at all convinced that she was having seizures.  They kept saying that there was nothing wrong with her except she was overly sedated from all of the medications they had to use to stop her seizures.  They gave her the clonopin and within a few doses, the focal seizures stopped but I could tell that she was paralyzed.  I knew Lynda had serious problems that no one at the Magee Hospital seemed to know what to do about and more importantly, they obviously didn’t care.

            There were no cell phones in 1981 and Lynda’s room didn’t have a phone.  I had to walk down the hall to a waiting room and call our family or the doctors in Memphis from a pay phone.  The black and white movie never stopped.  As I was calling a friend, I remember that my thin gold add-a-bead necklace broke and six or seven gold beads bounced on to the floor and rolled away.  I still can see that whole experience as if I’m hovering above the room and watching it happen to someone else.  As the necklace was breaking and the beads spilling all over the dirty floors in the pay telephone room, I remember thinking that this is exactly what our life has just done.  It has broken apart and everything we have known and loved is rolling around out of control. 

            Lynda’s vitals were not good.  Her blood pressure was 60/40 when she came in and it wasn’t getting much better.  She had pneumonia so that had to be treated with antibiotics.  Most disturbing, she was lying in a rather fixed position with her head and eyes turned in a strange and peculiar way.  I started working with her right arm and leg to see if the tone had improved  but it had not.  We were really worried that she wasn’t going to make it if we didn’t get her out of the Magee Hospital.  It was impossible for the doctors to treat a problem when they kept denying a problem existed.  It was impossible to trust a team of physicians who had placed our daughter into a bathroom instead of a regular hospital room.

 I was in constant contact with our neurologist,  Dr. Robert M. Boehm who was also a parent of a special needs child.  He urged us to get her blood pressure stabilized and as soon as it was stable to transport her immediately to LeBonheur Children’s Hospital.

  From my descriptions, he felt she had suffered a stroke during the extended seizure.  When we tried to pass on information from LeBonheur to her attending physicians they basically ignored us.  They didn’t contact them.  They just kept telling me I didn’t know what I was talking about as they went about playing their roles in this black and white nightmarish movie we found ourselves stuck in.

I called LeBonheur one morning and gave them Lynda’s vitals and told them that we were leaving Magee and headed straight to Memphis.  I don’t remember how many days we had been there.  It truly seemed like time had stood still since we opened the doors and entered the hospital in Magee.  Our pediatric neurologists would be waiting on us in Memphis to do a CAT scan and other tests.  I told the attending physicians that we would like to have her discharged to take her to LeBonheur and they refused to release her.  I explained that our neurologist had felt it imperative that we get her to a larger hospital immediately and preferably to the neurology team who had worked with her during the past three years.  The Magee Hospital still refused to sign a release. 

  We gathered up all of her things and Larry took them to the car.  He drove the car up to the exit closest to her room, parked and came in to her room.  Picking her up, IV’s and all we started out the door to exit the hospital.  That’s when the nurses saw what was happening and yelled to the doctors.  Doctors and nurses came running down a long corridor toward us screaming that we could not take her out of the hospital.  We ignored them and continued walking toward the door.  We didn’t know what they would do if they made it to us before we opened the exit doors but I knew Larry was not going to loosen his grip on Lynda for a second.

  Suddenly one doctor was right beside us jerking the tubing out of Lynda’s arms so that she was no longer receiving the IV drip.   We continued walking to the door and I stood between Larry and the people in the hellish film we found ourselves in as they screamed to the top of their lungs “If she dies, it’s your fault.  You’re going to kill her.  You can’t do this…”   Over our heartbeats we could still hear them yelling as the double doors shut behind us.

 I quickly got into the back seat of the car and Larry handed Lynda to me. This began the race toward Memphis to try to save our daughter’s life.  I pulled the needles out of her arms that had connected her to the IV.  Holding her in my arms the whole four hour trip, I prayed all the way that she would not die on the way to Memphis.  I prayed we weren’t too late to save her although we knew that she was never going to be the same. 

We stopped long enough in Batesville to grab Larry’s medications and some clothes because we had not taken anything with us to Magee.  When we left Batesville, we thought we’d be going down, getting Lynda who had always bounced right back after a seizure and then we’d come right back home.   We had been there for days.  While we packed, we propped Lynda up with the pillows on our bed.  My mother and daddy were there to see Lynda before we went to LeBonheur.  They could not believe how she looked and  told me afterward that they didn’t think she would even make it to Memphis.  Truthfully, we weren’t sure either.  We just knew it was her only chance and we had to take it.