What else happened in October?

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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