Once Tiara was stabilized and the seizure finally stopped after 2 hours, the ER doctors called CHOC and requested to have her transported immediately. Tiara was now on a respirator and not in a true drug induced coma, but close to it. She was completely sedated.
It was at this point my thoughts turned to Tabitha. I knew she was probably traumatized as she watched Tiara turn blue, foam at the mouth and then be taken out of our home on a stretcher and put in an ambulance. Tabitha was 7 years old and understood Tiara was not well, but this whole experience must have been terrifying. I have never believed in keeping important information from my children, so Tabitha knew everything about Tiara’s condition. The complexity of her condition was hard for Lou and I to comprehend so I knew she didn’t totally get it. What I did know was that this was the first time, but not the last time, Tabitha would worry about her sister dying.
Through the years, and all the hospital stays, I would sometimes find myself worrying more about Tabitha and Trinity than Tiara lying in the hospital bed. Tiara’s reality since before her first birthday has been a life surrounded by doctors, nurses, hospitals, blood tests, daily seizure medications and weekly therapy sessions. She does not know anything different and unfortunately never will.
Yet Tabitha had a “normal” life before Tiara was born and diagnosed. She played soccer, the piano, had play dates and was the only grandchild until Tiara was born. Once Tiara was diagnosed her life changed. As much as I always tried to overcompensate for this fact, by being the team mom for all her sports, never missing one of her games, always driving her to and from school myself, never in a carpool, the fact was that her sister was different than all her friends siblings. With these differences came worries but also a compassion for others many people will never understand. Every time I think about Tabitha and her kindness to others I am reminded of a specific incident, that epitomizes her compassion.
Lou, Tabitha, Tiara and I went at my parent’s mountain house in Lake Arrowhead for the weekend. We went to the village, for a little diversion and Tabitha wanted to feed the ducks. We bought the duck food in the sporting goods store and as she started feeding them they all swarmed. There was this one really ugly white duck that kept missing all the food and wasn’t quite fast enough. All the other ducks kept stealing her food just as she was about to grab it with her beak. Tabitha started getting so mad. She kept moving around to different spots trying to feed the ugly, slow duck and keep the other ducks away. She even went so far as to walk out on the public dock and starting yelling to the ugly duck, trying to coax it over to her so she could feed it. No matter what she did, the other ducks kept taking all the food. She finally got so frustrated, she said “ I am done”! “ Honey, you didn’t use all the food we bought,” I said. “ I can’t take it mom, those other ducks won’t let the white duck have any food. It is not fair and I won’t give them anymore food, if they can’t share with the white duck” “OK, lets go.” To this day, Tabitha has always had a special bond to the less fortunate, the underdog, the disabled or anyone not being treated fairly. I believe she was born this way, but I also know having Tiara as a sister has made this characteristic very prominent in her personality.
OK, back to the hospital. Once Tiara was transported to Choc she remained in the Intensive Care unit for 2 days until they transferred her to the floor. To make matters worse for Tabitha, she wasn’t allowed to visit in the ICU, because she wasn’t old enough. So I sent Lou home to be with her and my sister pretty much sat bedside with me for 2 days. Of course Lou and the rest of our family came to visit, but back then the ICU only allowed two visitors at a time and I pretty much refused to leave, except to use the bathroom. We took turns singing “You are my sunshine” because that was Tiara’s favorite song. Once the drugs wore off enough for her to breath on her own they took out the breathing tube.
During this stay they did a spinal tap, and another CAT scan, along with x-rays and zillions of blood tests. The doctors were always fearful she had some crazy infection, causing the prolonged status seizure. Yet, of course she didn’t have an infection when she arrived but after their repeated attempts to intubate her, she had aspirated during the seizure and developed fluid in her lungs. So, she now had her first of about 15 pneumonia’s to date. On the 5th day of her stay, they tried to start her on IV antibiotics but they had blown every vein on her body trying for all the blood tests and IV’s and she had nothing left. They decided to release her and send her home with oral antibiotics since they could not get blood from her or put in an IV unless they did a small operation and put in “ a line” for access. I did not think that was necessary, so we went home.
Two weeks later, her neurologist became extremely concerned with the escalation of her seizures and decided she needed to be put back in the hospital for more testing. He had added another medication but it wasn’t helping stop the seizures so he wanted more EEG imaging, another MRI, and while we were there why not check her kidneys and heart? I hate to sound cynical, but back then I let the doctors take Tiara on wild goose chases during each hospital stay as she was picked, prodded and examined tirelessly. It took me years, but I soon learned enough about her condition, and how she responded to virus’s, fevers, infections, pneumonia’s, etc. so that I could dictate what tests I would allow the doctors to perform and when they were really necessary. It took me several years to develop this skill but I now never let anyone perform any procedure or test without my consent. Funny enough, the doctors always direct their eye contact and speech towards Lou and not me since I am a woman. So weird. I was always fascinated by this, but Lou always cleared up their confusion right away. Usually within minutes he would speak up and say
“ My wife is in charge of her care, you better direct your questions to her.” And so they learned as did I because at this point Tiara was followed by a pediatrician, a neurologist, a neurosurgeon, a cardiologist, a pulmonologist, a nephrologist, an ophthalmologist, a dermatologist and a geneticist. Wow, that was a mouth full.
After the hospital stay her neurologist and neurosurgeon decided none of the medications were working enough and we had to do more. They wanted her to get implanted with a Vagus Nerve Stimulator (VNS). The VNS device is sometimes referred to as a “pacemaker for the brain.” A neurosurgeon places the device under the skin on the chest wall and places a wire from it to the Vagus nerve in the neck. The neurologist then programs the device in her chest with a laptop to go on and off for certain periods during the day. In addition when the child has a seizure you are supposed to hold a specific magnet over her chest on the device to activate it immediately. Her doctors had only implanted the device in one other child as young as Tiara but they felt she would really benefit from getting a VNS and they were running out of medications. So I started my war with the insurance company to get the approval.