Our situation has become serious. Lauren has been in the hospital (both CHLA and CHOC) pretty much the entire month of July, and as a result of Hilary not being home in almost three weeks, I am now down to my last pair of underwear. I don't know what to do, it seems silly to buy new underwear since the ones I have are less than two years old. Oh well, I guess I'll just have to start turning them inside out.
Other news:
Lauren is still at CHOC. They swabbed her nose to see if she is over her Para-Influenza. When the nurse came in with the kit, Lauren burst into tears and started crying really hard. Up at CHLA when they took a culture, they squirted water up her nose and had to push the tube down really far, which really hurt and made Lauren's nose bleed. It took awhile for everyone to calm her down and to tell her this was done differently and that she could do it her self. Which she did. Afterwards Lauren was really embarrassed and hid her face in Hilary's shoulder. We were pretty confident that the cultures would come back negative since Lauren has had it for over three weeks. She doesn't have a runny nose, hasn't been coughing and her lungs are clear. Once she got the all-clear signal, she would be free to leave her room. The only drawback would be that we'd have to give up our private room and most likely have to share a room, which is a pain, since there is only one TV, one bathroom, and the rooms are very small. Dragging the IV pole to the bathroom in the middle of the night is a pain. But worrying about sharing a room was a moot point, since she is still testing positive for para-influenza. We are now wondering how many other kids getting over the flu would still test positive for it. But it could just be her chemo suppressing her immune system, which is the most likely cause.
One of her two enzyme counts has fallen far enough to start her on lipids IV. Lipids are fatty acids (per Wikipedia). Hopefully this won't cause her pancreas to act up. Her other count went from 608 to 599, which isn't much. She needs to get in the 100 range. If her count goes down today they may start her on liquids tomorrow. They are planning on going really, really slow this time. We're thinking best-case scenario, maybe we be able to come home by Monday.
Due to the swine flu, I mean H1N1 virus, starting today, CHOC has implemented an only parents and guardian visiting policy. Meaning only me and Hilary are allowed to visit Lauren. While we know it's for the protection of the kids especially the ones on chemo, on a purely selfish level, this is going to be tough since we really rely on granny for a lot of stuff and help. Especially with me working. Also, it's going to be tough for Hilary to see Marissa. Talk about a big strain on the family.
Also, Hilary told me to add this on Lauren's blog: For those of you on Facebook to request me (Gordon Nihei) as a friend, since I post more frequent and current updates on Facebook. It's easy for me to make quick updates on my Iphone while at the hospital since I don't have access to a computer there.
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
Thursday, July 23, 2009
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