Hopefully this update makes sense since I'm going on very little sleep, which happens when you make two trips to the Emergency Department in two consecutive days.
On Friday, Lauren started having fainting/seizure-type episodes. We'd hear a thump, and when we looked, we'd see Lauren on the ground. She said she got dizzy. While we were concerned, we weren't too alarmed since she hadn't eaten much and had not been drinking much in over 11 days and it's been really HOT out here in the IE (95+ temp). On Saturday, she spent the day at her granny and granda Vernor's, where she had a few more fainting episodes. On Saturday night we all got to witness an espisode first hand. While eating dinner, Lauren told us she was getting dizzy. Her eyes and chin drifted towards the ceiling and she became unresponsive when Hilary was calling out Lauren's name trying to get her to snap out of it. After witnessing that, we made the decision that we needed to take her to the Emergency Department right NOW! On the way up, Hilary called ahead to the on-call oncology doctor. He said that when we got there, we needed to tell the people there that we needed to seen right away, which was a good thing, since the place was packed! The doctor was worried that since Lauren's platelet counts were low on Thursday that her brain might be bleeding. This began a very scary night.
Once there they ordered a CT Scan. As my friends on Face Book know, we were very worried and scared about what they would find on the CT. Me and Hilary kept giving each other that "on no" "please no" look, without saying anything, so as too not scare Lauren. By the way, with the swine flu going around and Lauren being an oncology patient with a compromised immune system, we always get to cut the line and get a room away from the general population but as always, the waiting for the results is the hardest part. Finally the doctor came into the room to discuss the findings. To our relief he said that there appears there have been no changes. You could hear the exhale of relief from me and Hilary. Phewwwww. He wasn't sure what was the cause of her fainting spells were, but he did notice some calcium build up on the tumor. We have no idea what that means. He told us to discuss it with Dr. Finlay. Lauren hasn't had any more episodes (knock on wood) since Saturday. We got back home by 3 am.
Yesterday (Sunday) morning, Lauren started complaining that her side hurts. By the afternoon the pain was getting worse, and she started crying. We had an appointment at the day hospital (we were planning on driving up to the Bay Area after wards) and we had just got back from the Emergency Department less than 12 hours earlier, so we were a little reluctant to take her again. Especially since the ED at CHLA was seeing swine flu cases. By 4 pm, Lauren was in intense pain and crying uncontrollably. We knew she was in a lot of pain, because when asked if she wanted to go to the hospital she said "yes." My fear was appendicitis or kidney stones. So we jumped in the car and headed to CHOC this time. We decided against CHLA due to the swine flu. When we got to CHOC, it was even worse looking there. There were triage tents and seats set up. People in masks and gloves. It reminded me of a scene out of "Outbreak". But again, since Lauren is an oncology patient, even though we were CHLA people, they saw her immediately. The first order of business was X-rays. Again the hard part -- waiting for the results. The doctor came in and sure enough, the x-ray showed that Lauren was full of poop! What a relief. BTW: while I might sound like things move fast, it wasn't until 8:30 pm that we found out the news. They wanted to check one more test before releasing us. Of course, in our world nothing is as simple as constipation. The test revealed that her enzymes level were high, 1,000 vs. normal level of 100. This confirmed she had acute pancreatitis (http://digestive.niddk.nih.gov/ddiseases/pubs/pancreatitis/). This means her pancreas is working overtime producing enzymes that help with digestion. Per the above website, this could be a serious condition.
Symptoms include: throwing up (which Lauren had been doing a lot) and intense abdominal pain.
Treatment: we'll be admitted for several days. The hard part, no food and drinks. No water, no Gatorade, no nothing! Oh! To top it off, since she is still coughing, she is confined to her room (no play room) and..., she can't have any non-sibling visitors under 12.
Someone is going to be crabby. We were finally transferred to CHOC's oncology floor around 3 am last night. We're tired and stressed. What's new?
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, July 13, 2009
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