Saturday:
Lauren woke up Saturday morning with a 103 temperature, anything over 101 we're suppose to call the oncologist on-call right away. However, we were left on hold. After 30 minutes we decided we could wait any longer, and decided to just head to the hospital and call the oncologist on-call on our cell phone. We checked her temperature again in the are. It still read 103 and her speech was beginning to slur. At this time we decided not to risk driving all the way to CHLA and instead head to the closest, which was CHOC, which is an hour closer than CHLA. Once in the emergency room, they drew labs, started her on antibiotic and ordered a CT scan on her head and x-rays of her chest. The CT scan was due to her slurred speech and her loss of balance. Thankfully, the CT scan revealed that the tumor was relatively unchanged, and that most likely she had some type of infection. They then asked us if wanted to be admitted into CHOC or be transferred to CHLA. If we wanted to be transferred to CHLA (which we did, since they know us and Lauren history up in LA), they'd have to call CHLA, who would then have to send an ambulance with a doctor to come pick us up, not sure if our insurance would cover it. But since Lauren's issue did not appeared to tumor related, we decided to just stay at CHOC.
Around 8 pm, Lauren's vitals signs took a turn for the worse. Her heart rate jumped to 180-200 (normal would be 90-100), her blood pressure dropped to 56/43 ish (normal would be 100/70 ish), and her temperature spiked to 104. Everybody was very concerned. They pumped fluid into her via an IV (normal drip 1/2 hour) over 2 minutes to increase her blood pressure, they put her on a cold made to try and her her temperature to drop, they also gave her blood transfusion to try an increase blood pressure. They put a on an special blanket that pumped ice water thru to try and bring down the temperature. This caused her to have the chills really bad, and also caused her hand and feet turned purplish-black, as her body pumped her blood out of her extremities to try and warm her core. We thought Lauren was going to lose her fingers and toes. The disease control dept. was concerned that her infection was caused by her port, so they deaccessed her and added a new central line in her thigh. They also wanted to monitor her blood pressure, so they tried to insert a monitor in an artery in her wrist. After several pokes he was unable to get the wire into an artery, so her tried her other thigh (the one without the central line), after many attempts and blood (it's not good when you hear the doctor say, "we need more gaze pads"), he tried her other wrist. Still no success. After 45 minutes he decided he couldn't do it. They also took another x-ray of her chest and did an EKG of her heart, all negative. Also around this time Lauren pretty much stopped talking or acknowledging us.
Sunday:
The blood test from Saturday night were negative for a bacterial infection, they now think it's some type of virus, most likely influenza. Which is still scary since they can't really treat it with antibiotics. She had a temperature in the 101-103, most of the night. Our poor nurse, Mary did an awesome job and definitely earned her pay. She had no down time at all. She literally worked on Lauren the whole night. We're very grateful for her.
The Nihei's: Our Story
On April 1, 2008, our 4-year-old daughter, Lauren, was diagnosed with a brain tumor. After her biopsy on April 8th it was determined that she had a bithalamic anaplastic astrocytoma with extension into her brain stem.
In the beginning of March we noticed a personality change in Lauren who normally is a very outgoing and happy-go-lucky kid. She became very clingy and shy. She didn't want to talk on the phone anymore, or play on the slide with the other kids at pre-school. By mid-March, Lauren started complaining about headaches. Her pediatrician thought it might be a sinus infection or that she may need glasses. He put her on antibiotics and we made an eye appointment.
A few days later when she started holding her head funny and her headaches returned we insisted on a CT scan. That's when her pediatrician sent us to the ER at Children's Hospital of Orange County (CHOC) for a CT scan, and when our world was turned upside down and our nightmare began...
Story continues at bottom of page
In the beginning of March we noticed a personality change in Lauren who normally is a very outgoing and happy-go-lucky kid. She became very clingy and shy. She didn't want to talk on the phone anymore, or play on the slide with the other kids at pre-school. By mid-March, Lauren started complaining about headaches. Her pediatrician thought it might be a sinus infection or that she may need glasses. He put her on antibiotics and we made an eye appointment.
A few days later when she started holding her head funny and her headaches returned we insisted on a CT scan. That's when her pediatrician sent us to the ER at Children's Hospital of Orange County (CHOC) for a CT scan, and when our world was turned upside down and our nightmare began...
Story continues at bottom of page
Monday, December 15, 2008
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