Nora’s Port


November 10th, 2008

I have been meaning to write a post about Nora’s port for a while since she seems to be the exception when it comes to having a port instead of a broviac for a child her age. We have had parents ask us about her port in the past when considering what is best for their child so I wanted the information and our experience with it to be available.

The port itself is implanted under the skin on Nora’s chest and is connected to a catheter which runs into her jugular vein.  The port is accessed by a huber needle which goes through the skin into a silicone membrane material which is connected to the catheter leading into in the vein.

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When the port is not accessed (no needle in) there is just a small bump on Nora’s chest (about the size of 3 stacked dimes) that requires no dressing. One of the benefits of a port is that when there is no needle in the patient can get completely wet and not have to worry about infection since the port is implanted completely under the skin.

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On the other side, each access requires a needle stick. It sounds unpleasant but as long as we use numbing cream, Emla, Nora doesn’t feel a thing. We change the needle once a week. An IV port, Infusaport and a Port-a-cath are all different names for the same device, just different manufacturers and size but the general construction is the same. Nora has a Bard SlimPort. The picture below is very similar to Nora’s in size and shape.

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On the outside of the skin, the huber needle is connected to IV tubing which is about 6 inches long. At the end of the line an end cap is attached, just like the end cap on a broviac line. There are butterfly wings on the top of the needle to brace it on the skin. We usually put a Bio-patch (the little circle pad) between the needle wings and skin to help prevent infection as long as Nora’s skin is not irritated.

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Nora never had a broviac, she went straight from a PICC line to a port so we don’t have the personal experience to compare the two. I’ve heard other parents say that they prefer one and other parents prefer the other, so there is no best answer, each patient and family has to weigh the options and try to figure out what’s best for thier child. If Nora had a broviac when she decided to tear off her dressing and remove her line last month then she would have had to gone into surgery to get a new line put in. But with a port we just put a new needle back in. No surgery is obviously good but having a needle to possibly injure herself with, not so good. And of course there are plenty of stresses that come along with the weekly needle changes, even though usually it goes very smoothly, when it doesn’t it can be extremely stressful and a risk for Nora if it is not done properly.

The average number of sticks a port can take before it needs to be replaced is 1,000-2,000. So if you only have to change the needle once a week it will last a long time as long as the patient doesn’t outgrow it first. Dr. Crooms estimated that Nora will need to have her port replaced when she is around 2 years old, she has had it since she was 2 months old.

All of Nora’s doctors believe that the infection rate is lower with a port but then there are other doctors who feel that a broviac has a lower rate. From our personal experience, Nora has never had an infection with her port in the 16 months she has had it and hopefully she never will. I guess the last difference I can think to mention is that the patient will have a bigger scar from having a port implanted over a broviac. Nora has two very small scars that are barely noticable, one over the port and one on her neck. Overall we have been very pleased with Nora’s port. Unfortunatley there is no such a thing as a “stress free” CVL but  some parents may find the pros and cons will outweigh in favor of one or the other according to the needs and temperment of their child. I am not pushing a port over a broviac, we do not have any personal experience with a broviac, but I hope some will find our insight helpful when weighing the options.

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A Happy Butterfly Halloween


November 2nd, 2008

Nora had a wonderful 2nd Halloween….all treats, no tricks!  Super Nora turned her cape in for wings and fluttered around as Nora the Butterfly Princess this year. Get ready for lots of pictures! :)

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Nora had a lot of fun playing with her pumpkins for the past few weeks. But then when she realized that we can take their “guts” out and put faces on them it took the pumpkin fun to a whole new level.

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After getting the pumpkins ready to greet trick-or-treaters Nora emerged from her cocoon as Nora the Butterfly Princess! We went for a little stroll around the neighborhood hoping to see some other trick-or-treaters but I guess we were too early. Nora had a great time just walking around and playing in the front yard.

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Thanks for celebrating Halloween with us Aunt Jenny! (a.k.a. mommy’s childhood best friend)
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Nora couldn’t get enough of sugary candy. We figured it’s Halloween, why not?!? ……..just kidding, just a little Halloween trick. :) Nora doesn’t even realize that candy is for eating, she just enjoys playing with the crinkly wrappers and sorting the colors. But she did get to enjoy some short gut friendly treats when we continued the Halloween fun by trick-or-treating at the grandparent’s yesterday. Nora shared some rice puffs with Mammie (formerly Grammy). Nora has lovingly renamed both of her grandmothers, Grammy (Montana’s mom) is now Mammie and NeeNee (my mom) is now Nana. The grandfather’s names remain unchanged until further notice. :)

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Then we’re off to Nana’s garden for some butterfly fun with the flowers!

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We hope that everyone had a safe and happy Halloween!

If you’d like to see Butterfly Nora in action just click on the video link on the left side menu at the top.

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A Perfect Day for Recognition


October 27th, 2008

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I started typing this post earlier in the day and had originally titled it “One and a half” because today is Nora’s 18 month birthday. But then it was brought to my attention that there is an article in our local news paper today about Nora’s wonderful surgeon Dr. Crooms recognizing him for his technique and skills in microsurgery. (Click here to read the article) What a perfect article to appear in the paper on Nora’s special day! Anyone who knows us personally or who reads Nora’s blog regularly knows that I can’t mention Dr. Crooms’ name without acknowledging him as the wonderful surgeon and amazing human being who saved Nora’s life. He is a very caring man who has preformed many amazing surgeries but holds not one strand of ego.

Statistically Nora had less than a 1% chance of survival with the overwhelming amount of dead small intestine that had to be removed due to midgut volvulus (kink in the intestine). The volvulus occurred in all three sections of her small intestine and only a total of 4.5cm was able to be saved. If Nora had not been in such critical condition they would have Life Flighted her down to Shands Pediatric GI in Gainesville for the surgery. Thankfully Dr. Crooms was on call the day Nora was born and now here she is 18 months later…..healthy, happy and spreading the Nora love. :) Dr. Crooms wrote in his OR report that he didn’t think that Nora had a chance of survival either way but did the surgery anyways to give her family a chance to have some time with her. Thank you Dr. Crooms for thinking with your heart and knowing that miracles do happen.

Well Nora decided to stay up and party very late on her birthday so I will need to finish writing the update on our big girl tomorrow but I didn’t want the day to slip by without posting our gratitude to Dr. Crooms. But with that said, my intentions to keep Nora’s blog updated are good but often late so just in case…..she’s doing great. :)

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Punkin Fun!


October 9th, 2008

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We took Nora to the pumpkin patch the other day and she had a blast picking out pumpkins, or as Nora pronounces it “punkin”! She ran around laughing it up at all of the punkins as if they were telling her jokes only she could hear. :) I guess her excitement was contagious because we ended up getting four pumpkins, two baby size and two bigger ones. She is so crazy about the baby one she’s holding in the picture above. She even gave it a hug today while saying “hug”. I swear she’d sleep with it if we’d let her.

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Below are some little video clips of our adventure. Just click on the links to watch. :)

http://www.youtube.com/watch?v=sEKZK2hoGVo

http://www.youtube.com/watch?v=vpxoUQBefGQ

http://www.youtube.com/watch?v=WeIJXv8oKUU

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Many New Firsts for Nora


October 6th, 2008

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Sorry for the lack of Nora updates lately, my computer crashed but now I’m back up and there is a lot of Nora news to catch up on. Nora has been a busy little girl the past few weeks and she has had a lot of fun and exciting new experiences! In attempt to not to make a mile long post I’ll write this in a little recap format.

First Tea Party!

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Time for tea! Nora made an excellent tea party hostess for her first tea party with pouring sound effects and all. :)

First trip to the Bookstore!

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Nora loves books, taking her to the bookstore for the first time was a very exciting event. When we first walked in the door she squealed with delight upon seeing sooo many books in one place! She didn’t care what section we were in, she was in book heaven just to be there. Nora’s first trip to the bookstore was a big milestone in public outings. We have been taking Nora more places recently now that she’s older (but not too many) but still being germaphobic with obsessive hand wiping and always going on off times when there is less of a chance to be around a lot of people. Keeping Nora protected from the germs of public places has been hard at times and honestly sometimes saddening to not be able to share her with more of the world but it is a necessity to keep her healthy and out of the hospital. But with that said, not taking outings for granted sure makes these times so much sweeter and a cause for celebration.

First New Potato!

Nora has been trying a lot of new foods lately and tolerating most of them very well, the most exciting of all of the foods has been new potatoes. Not because of it being a new potato specifically but because it was the first food that we ate together as a family. Nora ate hers unseasoned of course but with the growing variety of foods she can eat comes the realization that we’re getting closer to sharing the same meals instead of Nora having to eat something totally different than us. Which this is a very happy feeling since in the beginning she wasn’t ever expected to be able to tolerate oral feedings. Nora only had a total of 4.5cm of small intestine left after having 95% of it removed when she was only 4 hours old because of a midgut volvulus which occurred in all three sections of her small intestine.

First Shands appointment in the Tallahassee Clinic

Nora sees the GI doctors at Shands every 2-3 months and we have always had to take her to the main facility in Gainesville which is 2 hours away. With Nora not being a good traveler these trips are usually hard on her since we go down and back on the same day to avoid taking her to a hotel. There are no pediactric GI doctors in Tallahassee so once a month one of the doctors from Shands comes up to the Digestive Disease Clinic to see patients. Since Nora has been doing so well they finally agreed to let her be seen in the clinic where the appointments aren’t as long and in depth. The doctor was very impressed with Nora’s growth and she got an A+ checkup.

First Butterfly Dance!

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Nora has been watching little girls dance dressed up as butterflies on one of her DVD’s. When I asked her if she wanted to be a butterfly she excitedly said “yes!” I had been thinking to dress her as a duck for Halloween since it is her favorite animal but every time I asked her if she wanted to dress up like a duck she never seemed interested so a butterfly it is! I bought her wings a little early thinking it may take some time for her to get used to wearing them but our little caterpillar was ready for flight and wanted to dance with them on right away. Here is a little video of her first flight.

Nora’s Butterfly Dance (click to view)

First Night in Nora’s Big Girl Bed

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Nora had been sleeping in a smaller version of a toddler crib but all of a sudden last week she seemed to be exploding out of it and couldn’t even roll over comfortably. She has been sleeping in our room with her bed right beside ours since the day we brought her home. We haven’t moved her to her own room yet because she’s a very active sleeper and often gets tangled up in her lines as well as waking up frequently during the night. So we moved her bigger toddler bed from her room into ours last week and the new bed has been a hit. With our small bedroom and a bigger bed for Nora it was too crowded to have her bed beside ours so she’s now at the foot of our bed. So Nora and I both had a first last week, a first for her in a bigger bed and a first for her mommy not having her at an arms length away, we both did better than expected. :)

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Movin and Shakin at the Park


September 22nd, 2008

The weather is finally cooling down some so we took Nora to her favorite park both days this weekend. On Saturday there were some people playing music in the gazebo, Nora loved it and danced for them. They even sang a little song for her “baby likes to dance, baby likes to dance, baby spins in circles, baby stomps her feet, baby likes to dance, baby likes to dance”. Who knows it might be the next #1 hit!!

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18.4!


September 16th, 2008

Nora weighed in at an all time high of 18lbs 4oz this morning! When she went off TPN back in April she was 17lbs 11oz, then lost about 3lbs during the two months she was off and she’s been working hard to get her weight back up ever since. She’s meeting the weight goals set by her GI docs to get her back in a healthy spot on the growth chart for her age. Our petite little princess is growing like a little weed from head to toe. She was in the same shoe size for the longest time and has now jumped right over a size 4 and is up to a 5. Good news for a girl who loves shoes!

Nora seems to have lost interest in potty training for the moment (and will race off the potty to go in her diaper) but she has fallen head over heals with Elmo from watching her Elmo’s Potty Time DVD. She’s a very good caretaker to Elmo, giving him lots of sweet hugs and even making sure he gets his teeth brushed….

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and takes his medicine. :)
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Yesterday’s port needle change was an exceptionally good day for two reasons, #1 Nora got to keep all of her pretty red blood because since she’s doing so well we only have to do labs every two weeks now instead of every week and #2 Nora’s wonderful nurse Virginia was back from a well deserved vacation. Since she was out of town last Monday a new nurse was sent to draw Nora’s labs. We had already planned to change Nora’s needle ourselves because we made the decision long ago to not let anyone access Nora’s port besides us or Virginia to lesson the chance of a line infection. We got this idea from Ellie Brogan’s parents who thankfully wrote about it on their blog and we thought it was very smart and decided to do the same, Thank You Brogans! Nora has only had one line infection since she was born and we think limiting who access her port has played a big part in her success. Sticking to this plan yesterday saved us a heart attack at the very least and saved Nora from what would have obviously been a very sloppy needle and dressing change. This was apparent just from having the nurse assist with the supplies and pulling the blood draw (that’s the only part that is required for the nurse to do, but is done after the new needle is in and the port is dressed). She pulled out an UNWRAPPED tegaderm from her bag and gave it to me with out batting an eye expecting me to put it over Nora’s port. Not only was it out of the wrapping but had obviously been out of the wrapping for a while and the backing to the adhesive looked dingy, not that we would have used it either way. Tegaderm comes in a sterile packaging…..it comes in a sterile package for a VERY important reason, as do all of the supplies used to cover a central line going straight into the bloodstream. Then she took the end cap that goes at the end of Nora’s port line out of the sterile packaging and palmed it in an ungloved hand planning on attaching it to Nora’s line after drawing the blood. Neither of these unsterile supplies were used on Nora. She was a very nice nurse but was far from clean enough for our comfort. Thankfully we are so very fortunate to have such a wonderful nurse like Virginia who loves Nora and gives us such peace of mind. Not only is she Nora’s nurse but we consider her part of our family.

I’ll wrap up this post with some pictures from Labor Day at Nora’s great grandmother Mama Tom’s house. Nora had such a fun time playing with her cousin Olivia. They picked a rose out in the yard and sniffed it until it was falling apart.

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