Archive for November, 2008

A Long Overdue Update


November 30th, 2008

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Where to start…so much has happened since our last post. Some very good and exciting things have happened. Nora got to meet her great-grandparents (on her mommy’s side) for the very first time, Nora finally made it up to 20 pounds and her TPN was reduced with a plan put in place to keep reducing it. (yay!) Then the not so exciting events that occurred was a night in the hospital with a mystery fever and Nora will no longer have her wonderful nurse Virginia :( . It’s been a mixed bag of nuts the past few weeks but overall things are going very good.

Virginia has been Nora’s nurse since the day we brought Nora home from the hospital. Sadly Virginia is no longer working for our home health care company. Monday was her last day and the last time we had her help to change Nora’s port needle and draw labs. Until a nurse comes along that brings us as much comfort as Virginia then we will be doing these weekly duties ourselves. Virginia has grown to be much more than a nurse to our family. She’s a wonderful person and friend and has always gone above and beyond for Nora. Loosing her as Nora’s nurse has been very hard for both us and Virginia. It was not Virginia’s choice to leave but a result of downsizing because of this wonderful state our country’s economy is in. Of course we’ll still stay in touch with Virginia, but now instead of Nurse Virginia she’ll be Aunt Virgina.

Nora spiked a fever of 102 last weekend so off to the hospital we went where it rose to 103. This was Nora’s first hospital admittance in over 15 months. I guess we had rode out our luck long enough and it was time to pay our hospital dues. Obviously with Nora having a port our first fear was a line infection even though her temperature pattern and temperament didn’t allude to that. But she wasn’t showing any signs of a cold or a tummy bug either, the only symptom was a temp. and she was very tired. Her initial labs came back off just enough to make us scratch our heads, not showing a raging infection or strong viral signs but definitely a little off pointing in both directions.

The usual protocol at the hospital for kids with central lines who come in with high fever is to pump them with heavy duty antibiotics right away just to be safe. We were torn on whether to wait on the antibiotics because if it was a line infection we certainly didn’t want to give it time to get worse but we knew that antibiotics, especially the kind they give for a line infection, would tear up Nora’s system and she’d probably end up with bloody stool and a whole new set of problems like every other time she’s ever had antibiotics. Thankfully the nurses and doctors were well aware of Nora’s situation and didn’t push us. It was nice that they trusted us as parents so we didn’t have to fight them on the antibiotics or when we told them that no one touches Nora’s port line but us. We were nervous about chancing it but luckily her blood culture never grew anything.

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So hospital stays are never fun but at least this visit went better than expected. Nora has been extra shy and leery of new people lately so we were expecting an unhappy girl at the hospital but thankfully Nora saw it as a holiday and enjoyed playing in her “monkey cage” as we call the toddler hospital beds. Nora’s fever lasted almost exactly 24 hours so it must have been some sort of bug. Little ones get mystery fevers all the time but when a central line is involved we just can’t take any chances. This is why we are so paranoid and protective of Nora. When she has a fever we have to take her in to be safe but then just taking her to the hospital is putting her at even more risk to other sicknesses. Like the merca virus which we were told was the reason why the pediatric floor was almost at full capacity. great…..

Now on to the good news! Nora had her Shands clinic appointment the other week. The doctor she saw had not seen Nora since she was 6 months old so to him she was pretty much a new face. Before even examining her he commented on how good she looks just as a general healthy looking child. As he’s reviewing Nora’s chart and we are telling him how much she eats by mouth, he had to stop the conversation to confirm that there wasn’t a typo in her chart. “Is this right? Nora only has 4.5cm of small intestine?” “Not a typo!” we happily replied. So all in all he was quite impressed with our little miralce girl. Since Nora reached 20lbs in the time frame her main doctor had wanted her to be 18-19lbs, both doctors agreed that she is consuming enough calories by mouth and gaining weight so well that they reduced her TPN. She went from getting 320mls over 18hrs to 270mls over 12hrs. As long as she continues to gain weight then her TPN will be reduced by 15% each month until she’s at 0mls if all goes well. Keep your fingers crossed! :)

I saved the best part for last…..Nora’s second Thanksgiving was a wonderful one that included a very special visit from her grandparents and great-grandparents from Kentucky. As much as we have wanted to get Nora up to meet her great-grandparents, traveling 12hrs with her just hasn’t been a possibility yet and with them being 81 years old it’s not easy for them to travel either. My Dad’s parents have always been a big part of my life so this was a very special time for all of us to get together. They came into town a couple of days before Thanksgiving so we had some time to enjoy some outdoor adventures to some of Nora’s favorite spots.

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Nora with her Great-Granddaddy, Nana, Nanny and Granddaddy at Lichgate Cottage where we celebrated Nora’s 1st birthday.

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Nora was a great tour guide and showed her grandparents all around, making sure not to miss pointing out any sticks or flowers!

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Nora had a great time checking out acorns and berries with her Granddaddy. Nora is one nature loving little girl. Get her outside and she’s happy!

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Then of course we had to take Nora’s grandparents to meet her duckie friends at Lake Ella. It was a nice way to walk off our Thanksgiving dinner.

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Thank you so very much Nanny and Granddaddy for bringing Nana and Great-Granddaddy down to meet Nora!! We love you very much and miss you already!

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What else happened in October?


November 11th, 2008

I realized that I only posted fun, non-medical stuff last month so I figured that I should fill in the blanks. Thankfully Nora is doing great and there’s not too much medical stuff to catch up on. Let’s see….the change in weather has brought on seasonal allergies for Nora, (just like her mommy) with itchy eyes, sneezing and a stuffy nose, a trait I was hoping she wouldn’t inherit. We were at first concerned that it may be a cold but both her doctor and acupuncturist agreed that it’s allergies. Nora broke out in mystery hives with swollen eyelids one afternoon but thankfully they cleared up on their own, she had not eaten anything new so we contributed it to being allergy related.

Nora is up to 19lbs 7oz! She has been doing so well with consistent weight gain that we’re hoping Shands will decrease her TPN when she goes in for her check up next week. She has been doing great with her eating and her poops have been fantastic for many, many weeks. I’m being very daring to put that in writing as it seems that every time we say it out loud her poops go to crap, no pun intended.

The biggest excitement of the month was when Nora decided to surprise us by playing nurse and completely removed her IV port dressing and needle. The skin around her port usually holds up very well for never getting a break from being covered with tape but in the beginning of October her skin had decided that it had enough and became very irritated and raw. As you can imagine it is very itchy to always have layers of tape covering your skin and when you have raw skin under the tape it can become overwhelmingly itchy. So as a result from what we can only guess was a scratching frenzy, since we didn’t actually see Nora do this, out came her 1.5 inch huber needle one morning while she was quietly playing in her bed. Nora is too tough for her own good. We had wondered if this might happen one day when she was 2 or 3 years old but not at a year and a half! She has always had a high pain tolerance but she didn’t even let out a peep when she pulled out the needle and then it hung out in her shirt scraping up her tummy, for what looked like a good 30 minutes from the amount of TPN on her clothes, before we realized what she had done. Thankfully the needle didn’t puncture her stomach or end up in her hands. It’s crazy that she’s strong enough to pull the needle out because it does not come out easily, let alone get the dressing of many layers of tegaderm off. It takes a good strong tug to get the needle out of the port and I have to hold the needle in one hand and secure her port with my other hand to get it out. One nurse described taking out the needle like taking out the cork screw from a cork. I don’t know if I’d describe it as quite that hard but you get the point, it’s in there.

Of course we were completely freaked out when we realized what happened but all we could do was put a new needle back in and hope that no contaminants got into her bloodstream when she removed the needle with her little unsterilized hands. We kept her torso wrapped with athletic wrap while her skin healed so even if she went to town on her chest she couldn’t get to her port. This happened about 3 ago weeks so now we can safely say that there were no infections as a result of Nora playing nurse. But in the week following this incidence we were on high alert watching for signs of an infection that thankfully never came. I found my first grey hair the day after Nora took her needle out. Coincidence? :) We have had more than a few scenarios to cause infection scares with Nora and as hard as we try not to obsess over temperature checking during the following 48-72 hours it’s very hard not to worry.

So since we’re on the subject of Nora’s port I wanted to write a little bit about the details of her port to give a better understanding of how it works. I made a separate post right below this one to make it easier for people to find who are searching for information on ports.

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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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