Never Underestimate a Qualitative Analyst

Never Underestimate a Qualitative Analyst

Before I get going, let me just state that Lyra is finally home and doing great.  Not to toot my own horn, but it had everything to do with my strategy to feed her and persistence to get GI involved in the hospital. This is directly relevant to my title.

By trade, I am a Qualitative Analyst. Don’t get it confused with a Quantitative Analyst, those are the number crunchers. I deal with words, not just numbers. Now, data analysis is important and often plays a role in qualitative analysis. The difference is, I work with things that can’t be quantified. I take information from various sources and tell a cohesive story. I answer the questions, “So what?”, “Why is this relevant to me?”. I also use that information to propose solutions to complex problems. Many people (including my sister) have been baffled about how to apply this skill set in and out of the work place. So, let me put it in context of caring for Lyra.

Lyra has many people who are on her team. Her care (outside of family) involves an occupational therapist, dietician, gastroenterologist, cardiologist, surgeon, pediatrician, geneticist, and we will be adding physical therapist in the near future.  All of these people orbit Lyra and have opinions and insights to her care. However, they do not all communicate directly and the only common denominators are Lyra and myself. I am at EVERY appointment. Part of my job as her mom is to take the information that each of these caregivers, along with my own observations, and present it in a way that makes sense to everyone. My job is to tell the story that is “Lyra” that goes beyond test results and numbers on a paper.

According to test results, Lyra should not have been throwing up while getting NJ feeds. Also, according to test results, she should have been able to handle the volume/hr of formula the surgeons were prescribing. However, Lyra WAS puking and Lyra was NOT tolerating the volume/hr of formula she was being fed. Looking at the problem a few things came to mind:

  1. I know Lyra has trouble adjusting to rapid changes in volume. I have been puked on enough times to have solid evidence of this
  2. Her dietician had mentioned that, with cases like hers, you often can only increase feedings by 1 mL at a time
  3. Genetics has told us that most rules probably won’t apply to her since we have no idea how she will be physically/mentally impacted by her genetic abnormalities
  4. GI had previously told me that we will likely have to go by trial and error with her. If something doesn’t work, we just have to try something new

Using this information (mostly 1&2), I was able to come up with a solution for feeding her and present to the surgical team in a rational way. Was I sure that it would succeed, hell no. In fact, I anticipated it would fail. However, it has been about 6 days, Lyra is HOME, she is tolerating the total volume she needs every day, and she has only thrown up 3 times since we started using my method. What we had been doing wasn’t working, and we needed to try something new. Even the “wait and see” method had been tried and failed. With my professional skill set I was able to take the information from multiple sources, put it in context, and solve a problem. I didn’t spread sheets, or complicated equations. I took words from many sources, told a story that was relevant to audience, and proposed an information based solution. Because of my qualitative analytical skills, my daughter is home.

So what is a Qualitative Analyst? It is someone who using words, not just numbers, to tell a story and come up with solutions. In today’s world of big data, never underestimate the power of a Qualitative Analyst.

“Yay, a Fart!”…. Something I Never Thought I’d Say

“Yay, a Fart!”…. Something I Never Thought I’d Say

Okay, I never thought I would be so excited about a fart. Well…. three farts to be exact. Why am I excited? Because it means that Lyra’s pipes are starting to move again! This means taking one of the tubes out of her nose and being able to ween her off of IV fluids. One happy Mamma!

To catch some of you up, in my last post I mentioned that Lyra needed another surgery. Well, about two days later she stopped being able to keep anything but pedialyte down. While we were able to keep her hydrated, she wasn’t getting any nutrition. On Sunday the decision was made to admit her to the hospital and for her to have surgery ASAP. They tried to fit her in Sunday night, but she ended up not having the surgery until Monday afternoon. Due to some other tests they had to run, she was under anesthesia for over six hours. It was gruelling for Mark and I, but luckily my parents were there to keep us distracted (we will have to have a Hearts rematch later). Lyra did  great during the surgery and has been recovering really well.

Out of surgery she had three tubes. One goes down her left nostril, past her stomach, and past her duodenum We will be using it to feed her now that her intestines are waking up and are moving again (she just started getting 3 mL/hr in that tube). The second one, down her right nostril, was draining fluid from her stomach to reduce pressure on the areas where they performed surgery (they were able to take that tube out this morning). The third tube is her G-tube, which is currently just being used as an additional drain. Once we know she can tolerate her food and things are really working, we will start to feed her through this tube.

Since surgery she has only had to have four or five doses of morphine. Other than that, she has only been on tylenol and ibuprofen for pain (not bad for having your intestines mucked around with). She has had moments of smiling and playing. Her current favorite thing to look at is a giant dragonfly balloon that Grandma brought in yesterday. She has also been sleeping soundly when she sleeps. As I mentioned at the beginning, there are signs that everything is starting to move again! She farted a whole three times! Now we are waiting for her to actually poop…. I have never anticipated someone else pooping so eagerly in my life.

Anyways, the point is, she is recovering well.  She will likely be in the hospital for at least two weeks, but it’s for the best. She is well taken care of here and Mark and she has lots of eager visitors. Thank you everyone who has reached out to offer support.

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Lyra right after surgery

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Lyra yesterday (I couldn’t resist putting a bow on her)

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Lyra today… Good Morning Mommy

(The brace is just so she won’t pull her tube out. She has been trying)

P.S. I do have more photos like the series from her last surgery, I just have to use a different computer because mine is having issues with downloading photographs from my good camera.

The Blessing of Family

The Blessing of Family

I am one of those people blessed with a supportive family. That is not to say that we don’t have our own conflicts, lord knows we do, but at the end of the day we support each other. For me, yesterday was one of those days that I needed a little extra support. Most days I deal just fine with Lyra’s diagnosis. I put my head down, take care of what she needs me to take care of, and I try to keep a sense of humor about things. Other days I find the uncertainty overwhelming and sad.

All parents have dreams for our children. We look forward to taking that picture on their very first day of school. You know, the one where the backpack is so big compared to their little bodies that we are worried our little one is going to tip over. We look forward to their first words, tottering steps, and their first birthday cake all over their cute face. I looked forward to her first swim meet and sharing a sport that I love so much with her.

Then I am reminded that she may never do any of those things.

She may go to “school” at some point, but it will be nothing like what the average child experiences. While she will likely speak (she is very vocal right now), she will likely struggle to make herself understood. Forming words and/or sentences is listed as a challenge with both of her genetic conditions. She will likely struggle to walk, let alone run. And birthday cake….. yesterday we met with the surgeon to talk about putting in a G-tube (information below). Unless sometime really changes with her eating, that cake will not be on her face. Everyone around her will eat it, but she probably will show little, to no, interest. Lastly, while she already shares my love of the water, swim meets and a swim team may not be in her future.

So, some days I get really sad. And this is where my family steps in. I can always talk to my husband and my family was always available over the phone, but there is something about being able to sit with my mom on the back patio while she plays with Lyra. There is something about sharing a drink a with my brother-in-law. And it is so different to be able to sit on the couch with my sister with Lyra sleeping on my shoulder. The physical presence of family makes all the difference for myself, my husband, and most importantly, Lyra.

Some time in the next two weeks Lyra will be having surgery to have the G-tube placed (we do not know the date yet), and this will be a very different hospital experience than the last three. This time there will be no emergency room, no ambulance ride, and no frantic phone calls to get our lives reorganized. This time it will be planned, and she likely will not be in the hospital for more than a day. This time we won’t have to worry about who is going take the dog. This time I will actually have a bag packed for myself. And this time we will all be surrounded by family.

We are truly blessed to be here.

G-Tube information: http://www.chop.edu/treatments/gastrostomy-tubes#.VeePadNViko