Archive for August, 2007

Home Again!

August 4th, 2007

Well Nora once again blew off the fever and recovered like a champ! :)

This time it looks like it was viral and not an infection which is good news. It has been 48 hours and still nothing has grown in the cultures and she has not had a fever for well over 24 hours now so we got the quickest exit ever from the PICU ever and are back home.

During the hospital stay though her button she got in replacement of her G-tube a couple weeks ago seems to have been defective and started leaking very bad. We spoke with Dr. Crooms and decided to remove it and replace it with a G-tube again until we could get a new button. In hindsight though I dont think we should of done it as it was very painful for her to have it removed and her stomach now thinks the G-tube is food and was sucking the tube into her small intestine which was causing her to either throw up everything she ate or have it shoot out from around the tube on her belly. For those of you parents our there upset about your baby throwing up or pooping on you try having their food erupt out of a hole in their stomach with some extra bile and stomach acid added in just for fun. Funny thinking back to before Nora was born and how the only thing I was dreading was the poopy diapers and throwing up that was coming my way and how now a thing like a mix of bile and formula exploding from Nora’s stomach doesn’t even faze me. Anyways the good thing about this is it shows how well her stomach is working. We had to try several things to get the tube to stop being sucked into her stomach further and down into her intestine. We ended up cutting a baby bottle nipple and inserting the tube into it and using the nipple as an anchor on her skin to keep the tube from being sucked in. Pretty amazing considering it has not been very long since she had the g-tube all the time. Hopefully the replacement button will be here Monday so we can switch things out.

All in all though Nora is doing great and back to her normal sweet an happy self, just a little tired from the long couple days. Its nice to be home :)


‘SiCKO’ Health Care Card

August 3rd, 2007

This gave me a much needed chuckle plus I printed one out just in case :)

From Michael Moore’s website in connection with his new documentary about our terrible health care system comes the SiCKO Health Care card……

You now have the opportunity to print and carry your very own “‘SiCKO’ Health Care Card.” Playing the ‘SiCKO’ card has worked for a family in DeBary, Florida, whose daughter suffered profound hearing loss and was denied a cochlear implant. Her father sent a letter to Cigna asking, “has your CEO ever been in a film before?” Before he knew it, his daughter’s denial was overturned. It also worked for a family in Flint, Michigan who was stuck with a $66,000 medical bill until they posted their healthcare horror story on YouTube. Click here to see what happened next.

Download the PDF of the card below and follow these simple guidelines:

  1. Carry the card in your wallet with your insurance card.
  2. If denied treatment, show your SiCKO card to your doctor/insurer.
  3. Ask your insurer if they’d like to be in Michael Moore’s next movie, DVD, or appear on
  4. Tell them that, if denied, you will seek coverage from your local media.
  5. E-mail your story to

CLiCK here to download your very own SiCKO Health Care Card (PDF)

Celebrity Testimonial:

“There’s nothing like a little blackmail.” — Chris Matthews, host of MSNBC’s Hardball on the ‘SiCKO’ Health Care Card


Quick Omegaven Update

August 3rd, 2007

Well I called the division of the FDA in charge of the final approval process and of course the guy we have been dealing with is out of the office for 2 weeks and his replacement is not in today either. I was told by the receptionist that there was nobody else in the office at all I could talk to and she knew nothing. Must be nice not to have to work on Fridays….have fun playing golf guys :(

If we dont get this resolved first thing Monday I will be getting in contact with our Congressman.  I refuse to wait another 30 days just to get approval for something we are already approved for!

Some good news though as of last fever check at 4pm Nora had no fever. This is a very good sign :)


2 Steps Back

August 3rd, 2007

Well Nora is back in the hospital again :(

Nora came down with a fever yesterday that  quickly spiked to 103 so she was admitted back into intensive care. The big worry is whether she has a line infection or not. If she has one it is possible they will have to remove the port, treat her until the infection is gone and then put it back in on the other side of her chest. Total nightmare! So far though none of her cultures have shown anything and so we are hoping it is just a virus and not a blood infection. She needs to go 48 hours without growing anything for us to feel pretty secure it is in fact viral. We are keeping our fingers crossed.

The second bad news (that has me really, really pissed) is we have hit another roadblock with the Omegaven. We now must wait for the FDA to give her a final approval number (although she has already been approved for the IND!!!!!) which can take up to 30 days more. My goal today is to find the person at the FDA who can approve this and get her approved ASAP. We will NOT be waiting another 30 days just because of some more stupid red tape. Once we have this number from the FDA we can get the Omegaven here within 24 hours.

What is wrong with our healthcare system??? Maybe we should all move to Canada or Europe or something…………..


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