Omegaven is almost in our grasp!


August 8th, 2007

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Well we really should be getting Omegaven by next week. (how many times have we said that?!) But this time it has to be true, we can’t imagine any other possible obstacle. After finally getting everything straightened out with the FDA our home health care is now in the process of ordering Omegaven. They and we thought that we would have it in 24-48 hours until this morning it was realized that our home health care company doesn’t have an account with the courier company that has to be used to deliver the Omegaven in order for it not to get held up in customs for 1-2 weeks. It takes 3-4 business days to set up an account with this company (why would it take that long to set up an account, I don’t know…..) and then it should be here soon after wards. We are very anxious to get Nora on the Omegaven as her Bilirubin is now up to 9.3. :(

Nora got her new button put in yesterday so no more nipple tummy, yay! In order for her small intestine not to suck down the g-tube catheter balloon we had to anchor the g-tube to her tummy with a bottle nipple. This made dressing her quite a dilemma, we had to sacrifice a few onesies by cutting holes in them so they could fit over the nipple. Nora’s poor tummy went through a lot these past few days. In addition to her stomach lining being irritated by the g-tube issues, the heavy duty anti-biotics they had her on in the hospital made her have bloody poop again. She hasn’t had a bloody stool since this morning so hopefully it is clearing up and she’ll be back to having thick, healthy poops in no time!

Nora went to her local pediatrician today for a follow up from the hospital stay. While she was there they took her weight and measurements and Dr. Dalrymple was very pleased with her growth! She’s right on track for her age with her weight at a nice and plump 11 lbs. 5 oz. and above average length at 23 1/2 inches long. She’s grown 5 inches since she was born! Since the doctors expected for Nora to have nutritional issues her growth is quite impressive, that’s our Super Nora!

We still can’t post new pics in the photo gallery so here are a few recent ones for your enjoyment. :)

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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 :)

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‘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 MichaelMoore.com.
  4. Tell them that, if denied, you will seek coverage from your local media.
  5. E-mail your story to michael@michaelmoore.com.


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

http://www.michaelmoore.com/sicko/what-can-i-do/health-card/

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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 :)

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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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Happy 3 Month Birthday Nora!!


July 27th, 2007

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Today was Nora’s 3 month birthday and it was a great day! We celebrated by taking Nora for a walk around Lake Ella and fed the ducks. She pretty much slept during the stroller ride but watched the little duckies intently when we fed them bread crumbs.

We’ve come so far when you think back where we were 3 months ago today. We are so thankful for the progress she has made, we couldn’t have hoped for better. Today is Nora’s 9th day on all bottles and she’s still doing wonderfully! She’s been getting one bottle a day of higher calorie formula and is tolerating it well. She’s been on 20 calorie Elecare since she was discharged from the NICU on 6/12/07. So now she’s getting one bottle of 22 calorie a day and we hope to move her up to all 22 calorie bottles soon, very slowly of course.

We were supposed to have our monthly visit to Shands today but they rescheduled us for next Friday because the Peds GI doctors are moving offices today. We gladly rescheduled and enjoyed celebrating Nora’s 3 month birthday with the ducks and our good ol’ dog Bubba instead of at the doctor’s office. :)

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p.s.

Sorry the picture gallery hasn’t been updated lately. The web site server has been acting up and wont allow us to ad pics to the gallery at the moment but Montana’s working on fixing it. As soon as it’s fixed we’ll upload lots of new pictures of our cute little sweetie pie.

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Omegaven! On Its Way! YAY! YAY! YAY!


July 26th, 2007

Well folks we have some GREAT news. We have finally gone through all the red tape and have approval for the Omegaven here in Tallahassee, plus it will be covered by insurance which solves all the cost issues of the drug. All that is left to do is order it which should be done today so we hope to have it very soon. I am not 100% sure the process but I think we will admit Nora to the hospital for 48 hours during her first couple doses of the Omegaven so we can make sure she doesn’t have any side effects. I talked with Dr. Puder yesterday though and he said he has not seen any serious side effects from all 55 patients he has given it too so we expect Nora to do just fine.

A BIG thanks to all the great staff at TMH, CHP, Boston Children’s and American Home Patient (especially Dr. Patterson, Dr. Puder and Bobby Jean at CHP) for pushing the Omegaven through, we could not of done it without you! We hope now Nora will be able to grow up and thank you herself, once she learns to say thank you of course! :)

More good news (man I like sharing good news instead of bad) Nora has also continued to do great on the bottle feeds. Today marks 1 full week of total bottle feeds without using the feeding tube at all! This is huge for all of us as it makes our lives easier not to deal with the pump and it is SOOOOO wonderful to see our little girl eating like she should be :)

Tomorrow we got to Shands for our monthly visit and I expect nothing more than good news from them as well. We will post another update once we know when the Omegaven will start and more details on the process.

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