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Tuesday, August 18, 2009

More on Niki...

I am happy to report that Niki was baptized this weekend. :)

It was so beautiful, too. Unfortunately, I started to have flashbacks about Ethan during the ceremony and almost lost my composure. You see, Fr. Francis also baptized Ethan. Witnessing Niki's joyful baptism was a such stark contrast from the solemn one I saw last year.

Nevertheless, everything went smoothly and I know He was with us that day.

Niki was so beautiful. (I'm her mother so I'm obviously biased, but still...she really was.) My baby girl truly enjoyed having the warm holy water poured onto her hair. Her facial expression reminded me of the relaxed look women get when they have their hair shampooed at the salon. She was in total peace. Ah, I feel so much better now that she's a "child of God". :)

Sometimes I wish my eyes could take pictures. It would be nice to share how lovely she looked at that moment. I'll remember that visual for the rest of my life.

In other news, it's a lab week and the results came in....

Everything is fine. Almost too fine. Scary fine. Quiet before the storm fine! But...hey, that's just my paranoia setting in. She really is fine, but I'm a worrywart. Cut me some slack, okay?! Her appointment with Dr. Awesome was completely uneventful - just the way I like it. :)

The only change we discussed, which could be approximately 6 short months away, is the possibility of switching from the Broviac to a portacath. This, my friends, is a HUGE deal. When John and I learned of Niki's diagnosis, we scoured the internet and stumbled upon this lovely video on the internet. We were terrified with the idea of infusing her at home until we saw it. I've dreamed of the having a port-a-cath since the moment I laid eyes on how user-friendly it is. (A billion thank-yous to his parents for posting this video. It was our first glimpse of how manageable and "un-scary" her condition was/is.) From what I've read (and saw) port-a-caths are utterly awesome. No need to worry about tubes getting caught anywhere.

Niki has a Broviac. (Click here if you want to learn more about Broviacs and Port-A-Caths.)

JD and Niki at 3 weeks old. Home infusion at its finest. ;-)

I always thought that Niki would treat her Broviac as a part of her normal anatomy. She had it since was only a few days old so I figured she wouldn't be interested in it. On the contrary, she's just as enthralled with her "extra appendage" as the boys were with their naturally occurring one. I suppose the color doesn't help either...

She started to show interest in her Broviac at around 2 or 3 months old. The color would catch her attention back then. Now, she's constantly clawing at it. It makes it very difficult to maintain sterile technique when she's swatting, grabbing, and pulling her Broviac. I'm still worried about it getting pulled out/moving...even with the Dacron cuff, stress loop, tape, biopatch, and tegaderm to protect it! We're performing dressing changes more frequently now because of her antics. Aside from that, the Broviac is just so restrictive. You can't submerge the wound so bathing is difficult. Dressing changes suck. Tegaderm and paper tape aren't exactly made of steel so if she wants to yank at it (which she does though her clothing sometimes), she is perfectly capable of doing so. Even though surgery is scary, the benefits outweigh the hassle.

Only 6 months-ish to left to protect her Broviac. I can't wait to be rid of the tube.

While we're on the subject I need to get something off my chest. So please bare with me as I go off on a different tangent for a moment, okay? I have a pet peeve that I am compelled to share lest those who know me IRL make the same error. All of you know that I'm totally open about Niki's condition/treatment. As a matter of fact, I am willing and eager to answer questions because it shows me that you genuinely care about Niki. Nothing to be ashamed of, right? ;)

However, I cannot stand being asked about Niki's Broviac only to hear it then be referred to as a PICC line.

They are two totally different things, my friends. A guy from my class did that today (it's happened about a billion times with other strangers/family/friends) and it ticked me off just a little. It always pisses me off when people ask me a question they think they know the answer to. Why bother to ask if you think you know what you're talking about? When I say she has a central line, and the line is obviously inserted centrally, AND I refer to it as a BROVIAC, do not, I repeat do NOT call it a PICC line. I will correct you and then think you're a jerk for not listening carefully. I'm sure this person (and the dozens of others before him) didn't mean any harm, but I'm human and stuff just rubs me the wrong way sometimes. There, I feel better.

That's all, folks.

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