Broken Line

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.

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.

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.

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. 🙂

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.

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!

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