Archive for the 'Nora Medical Updates' Category

Let the Good Times Roll!


August 23rd, 2007

Lots of good news to report! The Omegaven therapy is going very good, even though Nora’s Bilirubin went up to 10.7 this week from 8.9 last week (which is expected while her body is flushing out the jaundice) her color is continuing to pinken up and get less yellow by the day. The whites of her eyes had been very yellow, especially in the corners, and they are also whitening up. Now her beautiful blue eyes are looking even more spectacular!

We had a very positive and encouraging conversation with Dr. Puder a few nights ago about decreasing Nora’s TPN and her overall progress. Since she’s taking a good amount of calories orally from the Elecare we should be able to start decreasing the amount of hours she’s hooked up one hour at a time. The ultimate goal is to get her down from 24 hours a day on TPN to only 12 hours at night. Since the Omegaven is only for 12 hours at night that means that we could have a IV line free girl for 12 hours during the day!!! We had our monthly Shands visit yesterday and discussed this with them too and they agreed that we can start tapering off TPN hours soon. They thought that overall Nora is doing very well and were impressed with the amount of formula that she is able to handle.

With both the Shands doctors and Dr. Puder we also discussed introducing some breast milk soon and they both think it’s a good idea. I stopped pumping a while back but we have a pretty good stock pile of mommy’s milk in the deep freeze waiting for her.

Lastly, a report from the poop inspector! Nora’s poop had still been pretty loose ever since the last round of anti-biotics from her hospital stay at the beginning of the month. It had slowly been getting thicker and then yesterday she had a picture perfect BM, just as thick as any other baby on formula! For those of you who are new to reading about Nora, her stool is a very important factor in determining how well her bowels are working and absorbing nutrients. The looser the poop, the less she is absorbing. So you can see why we do a happy dance when we see good thick stool. :)

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Here’s our little sweetie chillin on the couch and sitting up like a big girl.

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Quick Update


August 20th, 2007

I just wanted to let everyone know Nora is doing GREAT on the Omegaven.  She had no side effects as expected and it seems to be working already :) We dont have lipids anymore so just 1 pump during the day. Yay!

More details on Super Nora and the Wonder Fish tomorrow. For now Dad needs some sleep……zzzzzzzzzzzzzzzzz

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First Omegaven Dose Done!


August 16th, 2007

Well Nora handled her first dose of Omegaven just like we expected, with no side effects or reactions! She awoke bright and spunky this morning and we swear she’s already looking less yellow. At first Montana and I thought we were hopefully hallucinating but then the nurse said she noticed a difference too! Whether it’s working that fast or just a coincidence we’re still glad to see it.

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Since Nora handled the first dose fine we were moved into a regular pediatric room instead of the ICU for tonight. Less wires and much more comfy for everyone. As you can see Nora and dad are resting peacefully. :)

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We are looking forward to getting back home tomorrow and watching our little sweetheart whiten up – yay for the fish!

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Oh Happy Day!!


August 15th, 2007

Nora started on Omegaven today, YAY, YAY, YAY!!!! It’s been a long time coming and the culmination of work and persistence from a lot of people so today is a very happy day. Many thanks to Dr. Patterson, TMH Board of Directors, CHP, American Home Patient, and of course Dr. Puder and the Boston Childrens team!

Nora will be in the hospital for the first 48 hours to make sure that she doesn’t have any adverse reactions to the Omegaven. In our previous trips to the hospital it’s been worrisome, stressful and exhausting, but this time it’s exciting, happy and celebratory! We are very hopeful that Nora will have the same great results that many other children on TPN have had after starting Omegaven. Connor, one of the other short gut kids, who recently started Omegaven has seen amazing results. His Bilirubin is now at 0.6!! Way to go Connor!!

More great news to report is that Nora is in her 3rd week of all bottle feeding and now she is up to 22 calorie formula full time. She’s eating about 50 ml every 2-3 hours. Even though that’s not enough to meet her nutritional needs it’s still far more than anyone ever expected for her to be able to handle. She’s one tough cookie! She’s continuing to gain weight and is now up to 11 lbs 14 oz.

Here are some pictures of Nora beside her first bottle of Omegaven clinging to her IV pole as if to say…….

“I can’t believe its really finally here and I’m not letting go!!!”

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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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