Archive for the 'Nora Medical Updates' Category

Nora’s GI appointment


May 4th, 2010

Nora’s GI appointment at the end of last month went really well. We had a good thorough discussion with her doctor about what’s been going on with Nora and her care plan. Overall Dr. Dimmitt thinks she’s doing great but would like to see her gaining weight a little faster. She’s currently 25lbs which is in the 3rd percentile for her age. Last time they saw her 6 months ago she was 23.5lbs so a 1.5lb gain in 6 months isn’t very much. Ideally they’d like to see her gaining a good 6oz a month which sounds reasonable to us.

So the plan is to increase her Elecare calories getting her up to 30cal per oz. (which we probably should have done a while ago but had been focusing more on foods) and to increase her Omegaven from 50mls 3 nights a week to 90mls 3 nights a week. Nora’s Omegaven dosage has never been increased since she first started it at 3 months of age. Her TPN will stay the same which is 335mls 3 nights a week. Her doctor thinks that just by increasing her Elecare calories and Omegaven calories that her weight should pick up pretty easily without changing anything else.

Also discussed was the concern of a couple test results. We did a 72hr stool collection last month to test Nora’s fecal fat (which means the amount of fat she’s loosing through her stool = fat she’s eating but not being absorbed). Her results were concerningly high and left all of us scratching our heads because Nora is doing so well. Even though her weight gain has been slow she is well proportioned and filled out. Dr. Dimmitt’s response to the test result was regardless of the high number, Nora is doing very well and advised me to try to not to focus on the numbers too much. He’s good at helping me keep my mind grounded. If the results were correct, his main concern would be high oxcalate absorption from the bowel so at some point in the near future we’ll check her urine for crystals as a precautionary screening.

The other labs that have been causing us some concern are Nora’s liver enzymes (AST & ALT) have been a bit elevated for the last few months. Since she is on Omegaven and her TPN dosage is so little this doesn’t make much sense. Nora has been on a vitamin D supplement for quite some time due to a low level in the past. Her vitamin D level hadn’t been checked in a while and when it was checked last month it was also elevated. Too much vit. D can can cause toxicity in the liver so hopefully this was the cause of her elevated liver numbers. Nora hasn’t had the vit. D supplement for a full month now so hopefully when she gets this months labs drawn we will see that both her liver and vit. D numbers are back in normal range.

Nora has been on a water soluble vitamin called AquADEKs which are great because they are easily absorbable. But they are also a very bright orange and are wrecking Nora’s teeth and have stained them pretty badly. So since all of her other vitamin levels are in the normal range we are switching her back to Poly-vi-sol. But just a suggestion to those with g-tubes I highly suggest the AquADEKs since you can bypass the mouth and still benefit from their easy absorbability.

Nora traveled really well this time. Before now, going to Childrens in Birmingham was the farthest Nora had ever traveled in one day and it has always been stressful on her system. This time we went to her GI appt. on the way back from our visit in Kentucky. When we drove up to KY we drove all the way in one day, 13 and 1/2hrs and Nora did great. We made frequent stops and she ate and pooped normally which has always been a challenge in the past. She would just tell us when she had to poop and we’d pull over. Nora doing so well on this trip really gave us the confidence to know we can start having more fun traveling with our girl.

At the end of the long trip Nora did end up coming down with a bad cold with fever. Even though we weren’t around anyone sick, these things are bound to happen when traveling which is why we’d been so protective of getting her too far from home before. But thankfully Nora bounced back after just a few days. We hated that she got sick but it was good to see her system so strong and recover so quickly.That’s our Super Nora! :)

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Birthday Fun


April 28th, 2010

Nora had a great birthday yesterday and celebrated in typical Nora style with the ducks at Lake Ella. Her buddies Rachel and Maya were there to join in the fun.

It got really windy when it was time for the cake so we had a little trouble lighting the candles. But once we got them lit Nora had so much fun blowing them out we relit them and Nora blew them out a good 3-4 times.

And she was quite proud of herself every time she blew them out. :)

Nora thought her butterfly net would make a great duck catcher!

The party had to be cut a little short because the rain blew in but even with the rain, all in all it was quite simply a perfect day.

My heart was singing with happiness all day long in celebration of our wonderful little Super Nora.



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Wow Wow Wow!


April 24th, 2010

In the words of Nora’s favorite silly cartoon character Wubbzy, this month has been a big “wow wow wow” month. And with Nora’s 3rd birthday just three days away the wowness will only continue.

There has been so much going on this month; Easter, Daddy’s birthday, big trip up to Kentucky to Grandaddy’s farm and a GI appointment in Birmingham, I know I would write a book so I decided to let the pictures do the talking. As the saying goes, pictures are worth a thousand words and we took so many pictures on our big trip I think these pictures are worth about a million. :)

I hadn’t updated Nora’s photo site since January so now it is all updated from the past three months, so sit back and enjoy the Noraness of it all. :)

http://norathomas.shutterfly.com/

I will post more in the next few days with details of Nora’s GI appointment and I’m sure I’ll have to sneak in a few details of our wonderful trip to my Dad’s farm. :)

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Blah, blah, blah…


March 21st, 2010

Apparently that is what Nora hears when I am telling her why she shouldn’t be doing something after mommy has already told her not to. With Nora’s ever growing toddler independence, boundary challenging and general mischief making she has been coming up with different ways to let us know that she does not like being disciplined. Most recently she will look me straight in the eye and say “blah, blah, blah” while I am telling her why she needs to obey after she has done something that she knows she shouldn’t be doing. This girl is barely 3 years old – I thought that was the mindset of a teenager?!? Oh jeez, we’re in for it already.

Every child goes through the phase of wanting to put everything and anything into their mouth. As a younger baby Nora seemed to have skipped over this phase but she sure is making up for it now. From sneaking a drink of soapy water to chewing on curly ribbon…..did we really think we were going to be so lucky to miss that phase? Well yes, we foolishly did but we were wrong. When I caught her chewing on the curly ribbon that really through my nerves for a loop, thinking about what could have happened if she had swallowed it….ugh.

Our big girl toddler Nora is certainly keeping us on our toes and although sometimes it can make you want to pull your hair out you gotta appreciate her creative ways and love that she’s just being a typical toddler. A typical toddler with medical sense and IV’s is proving to be an interesting experience. The other morning Nora was ready to run around before her TPN was finished infusing, getting impatient with being restricted by the pole she picks up her line and says “I need some scissors!”

And when she pretends to put port needles in her dolls and stuffed animals and tells them they are going to the hospital, a part of me can’t help but be a little sad that this language is even part of her world. But then the short lived sadness is overridden by the fact that that all of her medical pretending is always in a happy and positive way and I know that it is a good thing for her and just part of her everyday normal.

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She may have a short bowel but we don’t see anything short of a typical, happy, silly toddler. Do you? :)

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MMR Vaccine


February 26th, 2010

Where did this month go? Even though February is a short month it still seems to have gone by exceptionally fast. I joke about our house being a time warp but time really does seem to disappear around here. I feel like there are so many Nora tidbits I want to share but I rarely get uninterrupted time on the computer to make a post or when I do, my mind is in a sleep deprived fog as it is now. So I’ll stop wasting time rambling on and spurt out what’s foremost in my mind before Nora awakes from her nap.

Nora got her first dose of the MMR vaccine (measles, mumps, rubella) at the end of January. Most children get this first dose between 12-15 months but we have always been very conservative when vaccinating Nora and since she doesn’t go to daycare we waited till her system was good and strong before dosing her with a live vaccine. Well initially she seemed to have no side effects from the vaccine, but then about a week and a half after getting the shot (same time frame that the CDC handout you get from the doctors says to watch out for uncommon side effects) Nora began having very frequent stools and some of the worst stomach cramps I have ever seen Nora have. Which is saying a lot because my poor baby girl has had very intense stomach pains off and on her entire life. At first we thought she was just going through a phase she does every so often where she will have more tummy aches than usual, with no other way to really explain it besides it’s just one of the unfun issues that come with short bowel syndrome. But after a few days of stomach pains that would wake Nora from a dead sleep, one night she woke up at 3am screaming and never went back to sleep all night long, it was apparent this was something different. Around this same time frame, Nora developed a faint rash all over her body as well as a big red blotch in the exact spot of the injection site of the vaccine, which had never been red before. Then the light went on that this all must be related to the vaccine. After relaying what had been going on to her local doctor he tells us that he had recently read about research on the MMR vaccine causing intestinal inflammation and the measle virus colonizing in the small intestine.
(insert dumbfounded face here)
Are you serious? I was pissed, worried, frustrated. How could we not have been told about this before we gave the vaccine to Nora? I double check the rare side effects, not listed, I talk to other short bowel parents, they’ve never heard of it either and thankfully their child never experienced this side effect. I ask her GI doctors if they are familiar with this, they hadn’t even heard of it but had seen similar intestinal side effects happen with other vaccines.

I start Googleing and find articles on this “debate” as far back at the late 90’s. From what I concluded this side effect is seen as a debate much like some vaccinations causing Autism is a debate. To me it is very clear cut that this is what happened with Nora and thankfully it didn’t last longer than a week. But a week straight is long enough for her to have up to 10 stools a day, most which were so painful Nora would sometimes even hit her stomach, shake her fist, or cock her mouth and head in an almost seizure looking way. All of which are very out of character actions for Nora. Some of her stools would come out with such force that I felt the vibrations in my feet while standing next to her. It was awful, period. I was furious that research has been going on for over 10 years and there are no warnings, no information easily obtainable out there about it. Parents need to know all possible side effects, especially when it comes to something like intestinal inflammation with a short bowel child.

Had we known about this before giving her the vaccine my initial reaction would be to not give it to her. But it’s still a catch 20-2, not vaccinating can be just as risky but at least we wouldn’t have been blindsided with it all and could have made a more informed decision. From now on I will be researching any vaccine we are considering giving Nora very thoroughly.

At the moment I don’t know of any other way to get the word out about this besides Nora’s blog and the short bowel group I’m a member of. But I plan on trying to find another outlet to spread the word because I think this is very important information that all parent’s should be aware of, short bowel or not, uncommon side effect or not.

Well my sweet angel is up and my blogging time has come to an end for now but I promise to post again soon and the next post will be full of fun, happy Nora stories and pictures instead of scary vaccine stuff. :)

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Huber Needle Recall


January 30th, 2010

There has been a recall issued on certain lot numbers of Exel/Exelint Huber needles. Thankfully this is not the kind that Nora uses but I wanted to pass along the information because it is very important that anyone who has a port or who’s child has a port make sure that they are not using any of these needles. The recalled needles can puncture the silicone membrane of the port which can lead to serious health risks and could damage the port to where it would have to be surgically replaced.

Click this link to read the full article on the FDA website:

http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm198676.htm

or you can read the article below:

FDA NEWS RELEASE

For Immediate Release: Jan. 26, 2010
Media Inquiries: Peper Long, 301-796-4671, mailto:mary.long@fda.hhs.gov
Consumer Inquiries: 888-INFO-FDA

FDA Announces Class I Recall of Certain Infusion Set Needles
Huber needles used in implanted ports to withdraw blood, inject medications, and other solutions

The U.S. Food and Drug Administration today announced a Class I recall of Exel/Exelint Huber needles, Exel/Exelint Huber Infusion Sets and Exel/Exelint “Securetouch+” Safety Huber Infusion Sets, manufactured by Nipro Medical Corporation for Exelint International Corporation.
Huber needles are used to access ports implanted under the skin of chronically ill patients for repeated access to veins for the withdrawal of blood and infusion of medication, nutritional solutions, blood products, and imaging solutions. These needles should be designed to penetrate the port without cutting and dislodging any silicone cores (or slivers) from the ports into which they are inserted.

Inspections conducted in October 2009 of Nipro facilities in Japan found that their needles “cored” in 60 to 72 percent of tests. The reason for this coring is related to design and manufacturing processes, which the FDA continues to investigate.

There are more than 2 million units impacted by this recall in distribution nationwide. Recalled needles were manufactured from January 2007 to August 2009. Units subject to recall have a lot number that begins with “07,” “08,” “09,” and one of the following product codes or catalog numbers:
Exel/Exelint Huber Needles Product Codes/Catalog Numbers
26901
26902
26904
26906
26907
26908
26909
26911
26921
26922
26923
26924
26925
Exel/Exelint Huber Infusion Sets Product Codes/Catalog Numbers
With/Injection Site:
27940R
27941R
27944R
27945R
27946R
27948R
27949R
27950R

Without/Injection Site Product Codes/Catalog Numbers:
27954R
27955R
27958R
27959R

Exel/Exelint “SecureTouch +” Safety Huber Sets Product Codes/Catalog Numbers:
37854S
37855S
37858S
Hospitals, clinics and patients who have needles from these lists should immediately stop using these affected products and return any unused products to Exelint International Corporation. Direct all questions concerning this recall to:

Attn: Armand Hamid
EXEL International
5408 West Centinela Ave
Los Angeles, Calif. 90045-1504
Tel. 800-940-3935
Fax 800-308-5048
E-mail: info@exelint.com
Following hospital reports to the FDA of leakage after accessing the port with a Huber needle (labeled to be non-coring), the agency conducted it own laboratory testing of Huber needles from multiple manufacturers. This testing showed that certain Huber needles produced cores when inserted into ports. However, at this time only needles manufactured by Nipro have shown a high frequency for coring. The agency is continuing its investigation and will update the public if there are new developments.

At this time, the FDA has not received any adverse event reports related to silicone foreign bodies released in patients from Huber needle coring.The agency received only reports of port leakage. However, because it may be very difficult for clinicians to associate adverse patient outcomes with the use of defective Huber needles, there may be under-reporting of events.

The agency has issued a letter to manufacturers of other Huber needles to address design and manufacturing concerns.

“The agency’s laboratory work helped determine the coring problem, and we will continue to work with manufacturers to address coring issues as quickly and thoroughly as possible,” said Jeffrey Shuren, M.D., J.D., director of the FDA’s Center for Devices and Radiological Health.

The FDA continues to work closely with all 20 manufacturers of Huber needles to understand the potential causes for coring and identify corrective measures. While a more thorough investigation of this situation continues, the FDA recommends that health care professionals consider taking the following precautions, which will be posted on the FDA’s Web site, when accessing implanted ports with Huber needles:

  • Avoid flushing the syringe when initially confirming needles patency upon accessing the port. If the needle has cored the port, flushing may introduce the core into the patient’s body, and could lead to serious adverse events.
  • When possible, upon accessing the port, consider aspirating a small amount of blood from the port after septum puncture, then discard the syringe with its contents. This step may recapture the silicone sliver. If the needle becomes clogged when attempting to aspirate, remove the needle, discard it and select a new one.
  •  Watch for signs and/or symptoms that may indicate damage to the port’s septum, such as medication leakage resulting in inadequate therapy delivery, along with tissue, nerve and/or muscle damage; and redness of the surrounding area.
  • Patients should continue to follow their doctor’s recommendations for receiving treatment.

Health care professionals and consumers may report serious adverse events (side effects) or product quality problems with the use of these products to the FDA’s MedWatch Adverse Event Reporting program either online, by regular mail, fax or phone.

FDA Information on Nipro Huber Needle Recall:

http://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfRES/res.cfm?id=87820
http://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfRES/res.cfm?id=87821
http://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfRES/res.cfm?id=87830

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The Year of Nora!


January 24th, 2010

It’s hard to believe that the first month of the new year is already almost gone. Our little family has been busy with typical life stuff and Nora is chugging along and doing great.

We wrapped up 2009 with a trip to the Sopchoppy River to visit my dear friend Ida who was in town for the holidays. Her parents live right on the river so we got a chance to take Nora out in a canoe for the very first time. It was just a short stroll in the water to see what she thought about it all and she did great and loved every minute of it. Before Nora was born canoeing was a regular hobby of ours which we haven’t done since my early pregnancy. You can see by the smiles on my face that this experience made me one happy mamma. :)

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Watch out 2010, this is only the beginning….I see many canoe trips and more fun adventures than ever before in our near future. I am proclaiming 2010 as the Year of Nora! Not to sound braggadocios but I am saying it with pure optimism and hope, although I’m never shy to brag about my girl. :)

Each year since Nora has been born has come with many challenges and hardships but they have also come with overwhelming happiness and amazement at the many huge successes our Nora girl has made. Medically and socially I just can’t help but believe that this will be Nora’s biggest year yet. We have high hopes of finally getting Nora off of TPN for good this year. She has really beefed up her oral intake and is only on 3 nights of 335ml TPN which is a very low dose. We’ve been talking with her GI doctor and nutritionist and plan to start decreasing her TPN even more soon. The plan will be to take her off Omgaven first to see if she can handle not getting fats intravenously and go from there. But even if this isn’t the year for her to be able to get off TPN completely we know she’ll continue to make leaps and bounds.

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Nora snuggeling up to our good ol’ cat Maxwell.

Nora had a nice visit with her Uncle Kia (Montana’s brother) this weekend.
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With her fishing hat from Uncle Kia and her boots Nora is all ready for a fishing trip!

On the social front, we are planning to finally get Nora up to visit my family in Kentucky this spring. This is something we’ve been long awaiting and very much looking forward too. Some time on my dad’s farm and visiting with family is just what we need. We will still be cautious with Nora when it comes to germ exposure but we are really planning to open up her social horizon more than ever this summer and hope to have many play dates with friends and family.

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