Archive for the 'Nora Medical Updates' Category

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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#1 Short Bowel SURVIVOR!


July 23rd, 2007

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Well we had been slowly introducing more bottles by mouth and less feeds through her feeding tube and today makes day 5 of ALL bottles by mouth! We didnt hook her up to the feeding tube once in the past 5 days!!! I even took the pump off the pole and put it away :)

This is a huge step for Nora and so far she seems to be tolerating the bottles like a champ. Her poops are great and she LOVES to eat. Her poops are so good in fact that Sarah took a picture of one but I will spare everyone that image…….sometimes I wonder about that girl :)

We take Nora back to Shands this week for her monthly checkup and plan on discussing increasing the amount of formula she gets or the calorie level since she seems to be doing so well with the feeding by mouth. My gut feeling is she will be able to eat a good amount more before having trouble and so maybe we can even decrease her TPN a bit which is the ultimate goal. Might be hopeful thinking but she is doing great!

I think the Omegaven ordering process is going to be worked out this week and so hopefully we will have her started on it by the weekend. Her bilirubin has continued to bounce around a bit but it is up some so we would really like to get her started before it starts becoming a real issue. All this red tape and waiting is making daddy crazy!

Also I noticed that Google (the king of the search engines, and daddy’s income machine) is now fittingly ranking Nora as the #1 “Short Bowel Survivor” … man Google is smart!!

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Healthily Hopping Along


July 18th, 2007

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Hello Everyone! We are very happy to give a Nora update to report that the blood in her stool has disappeared all together. She has had blood free poops since Saturday and we are hoping to continue on this healthy poop path.

When we weighed her on Monday she weighed 10 lbs 7oz, gaining almost a half a pound in just one week – yay! We have been increasing her bottle feedings and she is now up to three bottles a day in between G-tube feedings and she is tolerating the bottles very well. Hopefully she will continue to tolerate more bottle feedings and we can use the feeding tube less and less.

Also more good news. It looks like the Omegaven is FINALLY going to work out. It will probably be another week before we have it in our hands but we are starting to smell fish :)

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Two Steps Forward One Step Back


July 12th, 2007

Well there has been a lot going on with our little sweet pea these past few weeks. Lots of positives and one set back which the doctors are still trying to figure out. Last Wednesday Nora started having blood in her poop. :( We took her to the doc right away and they did stool cultures and blood work, all the tests came back normal. Nora was still on her heavy duty antibiotics when the blood first appeared so the biggest speculation is that they were so harsh on her system that she developed colitis. Another speculation is that she has developed an allergy to her formula so since last Friday her feedings have been cut in half mixed with Pedialyte and some feedings have been all Pedialyte. The change in her diet hasn’t seemed to effect the blood in her stool so an allergy to the formula has pretty much been ruled out. There is still blood in her stool so her local doc ran more stool cultures and blood work on Monday, all of which came back normal again. Then yesterday we took her to Shands to see what they’re thoughts were. They pretty much ran the same stool and blood tests that had been done here and again, all came back normal. Since nothing showed up in the tests and she looks so good they decided not to admit her and want us to follow up with the Pediatric GI specialist at Shands in the next few days. Seeing blood in our sweet Nora’s poop doesn’t give us an easy feeling but at least she is happy and doesn’t appear to be having any discomfort. She’s been her usual content self and hasn’t ran any fever.

There have been a lot of positives though even with the mystery of her bloody stool. First and foremost Nora has continued to gain weight even though she’s only been getting half strength formula for almost a week now. She’s now in the double digits – she was 10 pounds even on Monday! We were expecting her to lose a little weight with the feeding change so we were very happy to see the weight gain. :)

Another good note is that her new IV port is working beautifully. She gets a new needle every week and doesn’t even have to feel the stick thanks to numbing cream. Having the port in her chest makes dressing her much easier and much more sterile from when it was in her arm. When the PICC line was in her arm we would have to disconnect the line every time we took her arm in and out of a sleeve which gave an opportunity for contamination. Here is a picture of Nora’s port.

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The needle is under the little purple plastic device. The needle, tubing and plastic are all one piece. The plastic piece connects the needle to the IV tubing and the needle goes through her skin connecting to the port. Montana was brave enough to remove and insert the new needle on Monday with the home nurses supervision. (No, Montana hasn’t lost it and referring to himself in the third person, this is Sarah here). :) I’m still a little nervous of sticking Nora’s chest with a needle even though she can’t feel it but I’ll work up the nerve soon. We both want to be as self-sufficient as possible so we don’t have to rely on other people for the daily care of Nora and will know what to do in an emergency situation.

One more bit of good news is that Nora got her G-tube replaced with a gastrostomy button this week. So now instead of Nora always having a long tube hanging out of her tummy she has a little button that we attach a feeding tube to only when she’s on continuous feedings. A button is a much more secure devise and will not pop out and need to be replaced as often as a G-tube. The button should last her about a year and will only need changing when she has out grown it. Below is a picture of her gastrostomy button and the G-tube so you can see a before and after.

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And I saved the best for last, Nora has resumed bottle feedings again! She had her first bottle on Thursday, June 28 which was given to her by her sweet Aunt Jenn who came down from Kentucky to help out the week Nora was discharged from the hospital with the blood infection. It was her first bottle in over three weeks and she loved every drop. She’s only getting one bottle a day in replace of one G-tube feeding but she seems to be tolerating it very well. If it wasn’t for the blood in her poop we would have already bumped her up to two bottles a day but we don’t want change anything while she’s having this issue. Hopefully the blood will clear up soon and our little sweetie can have her feedings increased to catch up with her growing appetite and nutritional needs.

Thanks again to everyone for all of your love and support and for all of your sweet comments that have been posted on the blog. We love reading them and sharing news and pictures of our sweet little angel with all of you.

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