Archive for the 'Nora Medical Updates' Category

Unexpected but GREAT News


April 4th, 2008

I am pretty tired so I am going to keep this short but we have some VERY exciting news to share…….

We took Nora to Shands Hospital today for a checkup and they thought she was doing great. They were actually completely stunned by her progress. So much in fact that they suggested we try and see how she does WITHOUT TPN at all!!!! So starting this Monday we will start dropping her TPN rate and hopefully within ONLY TWO WEEKS we will get to disconnect her from the TPN completely and be line free!

Sarah and I can’t even hardly get excited yet as it seems very unreal at the moment since were told from the beginning Nora would most likely need TPN and a Feeding Tube forever. To think Nora has a very good chance of being off of all this crap before her 1st birthday is a dream come true :)

One of us will post the full details soon but I wanted to be sure everyone who follows our little Nora got this great news asap.

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Broken Line


April 1st, 2008

Well I guess the title says it all, Nora’s port line broke Saturday morning. It was a morning just like many others, Nora awoke at 8am, we played close to the IV pole waiting for her Omegaven to run out, ate some breakfast and were snuggling to go down for a morning nap around 9:30 when I felt something wet on her clothes. I first thought her diaper had leaked but then my eyes saw two big red spots on the front of her outfit. I opened her PJ’s to find her port line dripping blood and dangling from her chest……OH CRAP! Thank god this didn’t happen a few minutes later when I would have left her alone to nap. With this happening while Nora was completely still we have to think that there was a weak point in the line and with not much wiggle room with her being on a short leash connected to the Omegaven pole her line must have gotten pulled inside her clothes somehow and snapped. Even though it’s a single line that should not disconnect there are two points in the line that are mended together instead of it being a single continuous piece of tubing. It’s kind of hard to describe the details if you’re not familiar with Nora’s hardware so I’ve attached a picture to help explain.

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This is how the line should be, all ONE piece. The black piece at the top is the needle, you can’t actually see the needle but the black plastic pieces are the anchors to hold the needle in place on the outside of the skin. The Y in the middle is for needle access to the line and then the bottom of the line is where the end cap screws on.

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Here is where it broke, the white end cap is supposed to disconnect but the clear plastic piece it’s attached to is not.

There is a line about 12 inches long that is permanently connected to her IV port needle. At the end of the port needle line is where we put the end cap (the white thing) which then connects to her TPN and Omegaven as well as keeps her line closed when she’s disconnected. Montana and I have noticed that when Nora’s line gets kinked, pulled or twisted (which happens quite frequently with her being extremely active these days) it usually snags at where we’ve always thought was a problem area, and that is exactly where it broke. Even when we secure her line to her with tape that one spot always seems to bend over on itself.

So as soon as I saw that the line had broken I immediately clamped it off and pulled out the needle. Thankfully Nora was calm and still and didn’t make a fuss about me taking off the tape dressing without adhesive remover. We called Nora’s wonderful nurse Virginia and thankfully she was able to come over to put in a new needle. We could have done it ourselves but we were a bit shaken up and were very appreciative of Virginia coming straight over on a Saturday morning, not being on call and before even having her breakfast. THANK YOU VIRGINIA, YOU ARE THE BEST! Everything was all settled and back to normal all before noon arrived but Montana and I both felt like we had already had a full day and were spent. Hopefully this will be the last IV crisis for a while. They say bad things come in threes and this was the third major IV issue in the past three weeks. First was me dislodging her port needle, then the second was dealing with mystery air in the TPN filter for a week straight (which I will explain more about later) and now this. Thankfully her TPN backpack arrived last week so once she is strong enough to wear it all the time we shouldn’t have the issue of her line getting kinked, tangled, wrapped around her ankles and neck, between her toes and anywhere else it finds it way to cause trouble.

Nora tried on her new backpack for size right away, empty of course, and loves it! It’s like she’s been wearing it all her life. She immediately wanted to run circles in her play pin, free stand for long periods of time and hold my hands walking all around the house.

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We’ve set up an appointment with an occupational therapist to assist with her balance and to make sure the weight of the backpack with the pump and TPN bag inside wont be too heavy for her. Unfortunately the first appointment isn’t until April 17. But in the meantime she’s been wearing her empty backpack for spurts of time during the day and we even put it on her with the pump and TPN bag inside just to see if she can hold the weight and she can! Her balance isn’t nearly as good with the weight but it’s a very promising sign that it didn’t knock her right on her tushy and that she can still stand and walk unassisted in her crib with it all on her back.

Obviously with her line breaking a line infection is of great concern. Thankfully the blood was coming out so the chances of contaminates going in are slim but there is always a chance. We’ve been watching her temperature and requested a CBC (a Complete Blood Count) to be included with her weekly labs yesterday to make sure there are no signs of infection. Thankfully the CBC showed a low Neutrophil count which means there are no signs of a bacterial infection but it also showed a high Lymphocyte count which means her immune system seems to be fighting a virus. We were a bit worried last week that she may be fighting a cold because she had a bit of a runny nose but that has now cleared up. So we’ll just continue to keep a close eye on her as usual and hope for the best.

On a happy note, Nora’s weight has been on an upward trend and her TPN rate will be dropped to 14ml/hr tomorrow, yay! More news to smile about is her development. She has now added “dog”, “book”, “pump” as in IV pump and “eat” to her vocabulary as well as using the sign for “eat”. Her two favorite words to say are “cat” and “duck”. When she’s asked where her tummy is she’ll pat her stomach and when she’s asked where her ear is she touches it and will then usually fold it in half like a taco, see picture below. :)

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Nora has also developed her own dance style and will bend her knees and drop her butt to the floor and then back up when you say “Dance Nora Dance!”. When she is asked what a snake says she blows air out from around her tongue and when she’s asked what a piggy says she tries to snort which is pretty much her breathing hard in and out of her nose but it’s pretty darn cute either way if you ask me.

Well I’ll wrap up this post with some happy pictures from Nora’s 11 month birthday which was last Thursday, 3/27. I just can’t believe our little baby will be a year old in just a few weeks. We are so blessed and thankful to be approaching this Nora milestone.

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We celebrated the day in Grammy’s garden with much love and happiness. It was a very special day because not only was it Nora’s 11 month birthday but it was also the very first time that Grammy, Montana’s mom, felt strong enough to not only hold Nora while standing which had only happened one time before but she was able to hold her and walk around. LoraLee (Grammy) has Dystonia which is a very painful neurological disorder that attacks the muscles causing them to spasm and lockup in unnatural positions. It can attack any part of the body and even internal organs. LoraLee had to stop working and driving years ago because of dystonia, a lot of the time she struggles to walk and to do daily activities. LoraLee is an amazing soul and doesn’t deserve this horrible disease but her spirit is very strong and shines through. Just like with Nora we don’t know why we’ve been given these physical challenges but I truly believe that there is a reason for everything even if at this moment in time we can’t see what it is. WE LOVE YOU GRAMMY!

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Grammy is the tiara queen and every birthday isn’t complete without one……even if Nora’s not so sure about it. :)

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An Afternoon with the Ducks


March 10th, 2008

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Nora had a sun filled afternoon at Lake Ella yesterday. She loved watching the ducks and even began saying the word “duck” while we were there. Lake Ella is a public park popular for walkers right up the road from our house which we visit often and will be doing more so now that spring is in the air. Nora loves people watching, she either pointed, waved or said hi to almost every person, dog or duck that was walking around the lake.

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Here’s a little video clip of Nora saying “duck”. It’s not very long but at least I caught her saying it a couple of times before the memory on the card filled up.

http://www.youtube.com/watch?v=_91DUmj7ypU

Yesterday was a much needed breath of fresh air of the stress from Thursday afternoon when I (Nora’s mom) accidentally dislodged Nora’s IV port needle. :( I was putting her in her bed while she was wearing nothing but a diaper, which I rarely do, with her IV pump bag over my shoulder when what seemed like in slow motion I see the tape dressing covering her IV port pulling up. The slack in the IV line between her and the pump had gotten caught on something, which I’m still not quite sure what it was, but lesson learned, ALWAYS double check placement of her line and NEVER put her down in just a diaper. If she had been wearing clothes the tension on her line would have pulled at where her line comes out of her clothes first, but I was in a hurry and thought I could put her in her bed for just a minute while I got dressed………wrong. I immediately grabbed her up trying not to panic to check out the dressing, I could tell by the feel of the dressing that the needle had become dislodged and then that was confirmed when I tried to flush it and the saline wouldn’t go in. So I sterilize my hands, remove the dressing, take out the needle, put numbing cream over the port in preparation for a new needle and call Virginia, Nora’s nurse, and call Montana in from the office all the while cursing myself in my head for what had just happened. Nora was totally fine looking at me and smiling while I’m trying not to cry. I know these things happen and her needle has become dislodged before unexpectedly but when I’m the one putting her at risk for infection over actions that could have been avoided it is quite nerve wrecking. But thankfully the line didn’t break and I took the needle out right away so she wasn’t at anymore risk then she is every week when we change the dressing and put in a new needle but it still sucked. Virginia wasn’t working that day so we opted to put in a new needle ourselves instead of having the home health care company send over the nurse on call. We had Virginia train us to do needle changes for just these type of situations. The new needle went in fine and her port didn’t clot off, thank god since there was no way to flush it with heparin before taking the old one out. But for the next 72 hours after that (the maximum time for a line infection to show up) I replayed the removal of the old needle and the actions taken putting in the new one over and over in my head, second guessing that I had been as sterile as possible. I knew that I had followed all of the right steps and Montana reassured me all was ok but it was still hard to not worry. So the 72 hours came and went with no issues or fever, wheew. Now it’s time to take a deep breath, thank our lucky stars and take a break at the lake.
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Poop Talk


March 2nd, 2008

The past week has been a bit stressful with non-Nora stuff but Nora’s had a pretty good week and when she’s doing well it always helps deal with other things.

Montana’s dad came home from the hospital Monday afternoon still feeling pretty yucky and without many answers as to what happened. Jody (Grandaddy-o) continued to feel poorly through out the week but thankfully has started to feel a bit better over the past couple of days. It was a struggle for Montana to know his dad was in the hospital right up the road from us and not being able to go visit him. With the flu running rampid everywhere we did not want to put Nora at risk and stayed clear of the hospital. Jody’s care and concern for Nora’s health is a top priority as well and he wouldn’t have let us go up to visit even if we had tried. Thankfully Nora’s Uncle Kia, Montana’s younger brother, was able to pull hospital duty all weekend and made sure his dad was well taken care of .

Nora’s communication skills are growing by the day and the developmental therapist for special needs children thought she was doing so well at her appointment on Wednesday that she said she didn’t think Nora needed to be in the program anymore unless special concerns came up. Nora’s language and cognitive skills were assessed at 1 1/2 to 2 years of age and her physical developed is right on track rating at 10-12 months. She is now not only saying “poop” but telling us when she does so, which with short gut is quite often, although it’s rare that she goes and we don’t either hear or smell it. Most parents probably wouldn’t be so happy for their little girl to be saying poop but when you’re a parent to a short bowel child it puts poop in a whole new perspective. Nora is also pointing to her hair and feet when you ask her where they are.

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Nora’s TPN rate stayed the same this week because she had lost 6oz on Monday’s weigh in. It’s always disappointing to see a decrease in her weight but we’re not too concerned because we feel pretty sure her weight loss was due to a poop-a-thon that began the day before she was weighed. Her stools had been consistently thicker but then last Sunday boom, LARGE quantities of VERY loose poop. It’s hard to portray the magnitude of how explosive her poops can be until you’ve seen it first hand. Nora is teething again and her poops always get very loose when she’s cutting teeth. They’ve thickened up in the past few days and she still has a good appetite so we’re hoping for a gain back of what she lost plus some at tomorrow’s weigh in.

Nora started eating Cheerios last week, well not the name brand Cheerios cereal but an organic version and loves them! She wasn’t too thrilled with the first try but after a few days of eating a few at a time she has decided that they are very fun and yummy to eat! She’s very good at chewing/gumming them up before she swallows all the while making “mmmmm” noises.

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Nora loves stroller rides and being outside. Thankfully the weather has been nice and warm enough to get her out and about lately.

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Right on Track!


February 22nd, 2008

Nora had her 9 month check up yesterday (even though she’s closer to 10 months) and got an A+! Dr. Ness was extremely pleased with how well she’s doing in all areas, growing, eating, mental development. She’s in the 90th percentile for length and weight and in the 50th for head circumference. We could not be happier with Nora’s progress! :) Her TPN rate was dropped earlier in the week and she has been tolerating the decrease very well and her blood sugar has been staying stable.

Nora had her first bite of oatmeal on Sunday and loves it! We cook her organic oats and blend them up. She’s still eating her squash and rice porridge as well. We tried sweet potatoes a few weeks ago but they were giving her diarrhea so we’re holding off on them for now and will try them again when she’s a little older. Her digestive system seems to really like the oatmeal and it hangs out in her intestines for a long time and makes for nice thick poopies. Since her system seems to like oats the next new food we’ll try is Cheerios. We’re excited to give her finger foods with a new texture and I’m sure her new teeth will enjoy munching on them.

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Do I have something on my face?


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A Happy Monday


February 18th, 2008

Today’s needle changing went great. Nora didn’t shed a single tear. She got a little suspicious when we weighed her but then was completely content in her daddy’s arms while Virgina did her assessment, put in a new port needle and I held a valentine balloon for her to look at. We will definitely continue the tag team approach from now on. Nora gained 3 oz from last week so her TPN rate will be decreased to 15ml/hr for 12 hours a day and stay at 17ml/hr for the other 12. If she has a gain at next weeks weigh in then she will go to 15ml/hr 24 hours a day. :)

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Nora Update


February 17th, 2008

I can’t believe it’s been over two weeks since our last Nora update. Time just flys by in Noraland but she has been doing great. She has been at a lower TPN rate for the past two weeks (down to 17ml/hr from 20ml/hr) and has continued to gain weight at an impressive rate. She was up to 16lbs 12oz last Monday and we are anticipating another good jump at tomorrow’s weigh in. Her doctor will continue to decrease the rate each week as long as she continues to gain weight. The ultimate goal is to get her down to a lower rate for only 12 hours a day instead of 24 and then eventually get her off TPN all together.

But one thing we’re not looking forward to tomorrow is the weekly needle changing routine. For the past 4-5 weeks Nora has been getting extremely upset when we put in a new IV port needle. We’re still using the numbing cream so she’s not feeling physical pain but she certainly lets us know that it hurts her feelings, gets very upset and cries a very sad cry. :( She’s just too smart and knows the routine. We weigh her, then nurse Virginia takes her vitals and assesses her then the new needle process begins. We put on our face masks to keep our germs away from the port site and nurse Virginia organizes the dressing supplies, blood vials, etc. while I get all of the comforting supplies ready, binki, bottle, favorite toys. For a long time she was totally fine to be distracted with toys, drink a bottle, or sometimes even fall asleep during the process but then something changed. We have to hold her in a certain position to keep her still and I think that’s definitely a big part of the problem. We let her sit up last week instead of lying her down to see if that would help but she still got just as upset. She gets so upset that some of the time Virginia can’t even draw blood from the port until she calms down because she’s so tense her blood isn’t easily flowing. It’s always me (mom) and Virginia for the process so tomorrow dad will be here in hopes that a changing of the guard will help. We know that this often happens to children who have to have a lot of medical procedures done, we were just hoping it wouldn’t happen with Nora. One very good thing out of all of this is that Nora still loves her nurse Virginia very much and doesn’t associate her with the not-so-fun stuff. We can’t express enough how thankful we are to have such a wonderful nurse like Virginia who loves Nora so much and takes such good care of her.

On a happier note Nora is going through a language explosion! She is saying “Dadda”, “Mamma”, “Bubba” (the family dog), “poop”, yep!….poop, and the most complex is “kitty cat”. Most of the time she will just say “cat” but when she’s really excited about seeing them she’ll say “kitty cat” in a high pitched squeal. A lot of times when Montana comes in from work, which he is frequently in and out during the day since his office is in the back yard, she will say “hi da!”.

Nora is also now able to stand for a few seconds all by herself without holding onto anything. She practices in her bed and play pin starting off by letting go with one hand and then the other. She LOVES to play peek-a-boo by peeking out back and forth from above and below the top rail.

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She is also now officially crawling and also hurling herself forward at an alarming speed. A few weeks ago she realized that she has fuzzy stuff on top of her head and loves to feel her hair.

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Thanks to all of you who left such sweet comments about the passing of Montana’s grandfather. Your love and support is very much appreciated. He was a wonderful man who meant so much to all of us. On the day he passed Nora was able to gather at Mamma Tom’s house with the rest of the family and finally meet Montana’s cousins and their children. Even though most of his family only lives 20 minutes away Nora hadn’t met but just a few of them because #1 we are very protective of Nora and have been keeping her exposure to other people limited until she got a little older to give her immune system a chance to get as strong as possible, and #2 there were colds circulating among the family for a while. But thankfully everyone in the family was cold free and Nora was able to help bring some light and love on a much needed occasion.

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