The Battle Begins
Things started to change in November 2011. Parker was not able to tolerate any of her feeds. There were gut wrenching screams anytime you put anything in her tube. They thought it was a virus. The doctors couldn't find anything except Parker couldn't handle that food anymore. So they switched her formula, something predigested, and it worked better. During this visit her body temperature went haywire. Parker had never run a fever in her entire life, not even with the worst of infections, but this time her temperature dropped to 93 degrees. She was diagnosed with dysautonomia. Her first case of c-diff happened in December that year, too. She became colonized with it. They did numerous vancomycin five week tapers and after each treatment would end, she would be positive for it again. In January 2012, Parker started aspirating on her own secretions. She couldn't control them anymore. By February, she was choking and would stop breathing from her aspirations and it progressively got worse daily. In March, the doctor injected Botox into her saliva glands in an attempt to dry them up to no avail. Finally, they took their last option - Parker had a tracheotomy on July 5, 2012. It was a great decision for her and her health. And as 'terrible' as all this might sound, the family was okay with it. They adjusted to their 'new normal' every time a new medicine was added, or another piece of equipment had to join her room and their routine, or they were hospitalized to change her formula again.
The Scary Times
The scary times started in the middle of August 2012. Megan was at work when Parker's home health nurse called to say that Parker had only been awake for a few hours and had already had over 20 seizures. She had 86 that day. They just kept a close eye on her because when children like Parker start getting sick an increase in seizures can happen. Megan nervously went to work the next day and when the nurse called to say that Parker had already had 80+ seizures again, it was time to go to the emergency department. Megan met them at the hospital after work and Parker was already admitted. She completed that day with 102 seizures. The next day was the same, another 100+ seizures. The doctors did another EEG and MRI that day. The EEG showed all the seizures that they were seeing, plus more while she was sleeping, and the MRI didn't show anything new. The doctors said there was nothing they could do except sedate her at all times and even then the seizures might still happen. They couldn't add anymore seizure meds, she was already on five of them at this time.
The hospital brought in Palliative Care to talk to them. Basically, they were told that because Parker's brain was smooth (Lissencephaly) and extra small (Microcephaly, but it also only filled part of her cranial cavity) and because Parker's body was growing so well (she was a big girl), that she was literally outgrowing her brain's capacities. Phillip used this analogy to help Megan better understand what the doctors were telling them: "Parker was born, hypothetically with a golf cart battery (brain) and she was the size of a golf cart (body) but as she kept growing, she still had to continue to use this golf cart battery. And now that she's a full size truck, her battery can't run everything the truck needs it to. That golf cart battery will soon enough have to decide if it can run the motor, the headlights, the a/c and the interior lights. It will have to chose what it feels is most important." As much as Megan didn't want to hear this, something in her gut and heart told her that this time the doctors were right about her child's future. They were discharged the next day and again tried to adjust to a 'new normal.'