Friday, September 10, 2010


Is it sad that I was at such a frazzled point the other day that I took hope and energy from a VeggieTales song?

Lily got her 15 month shots last week. A few days after, she got a cold. Of course, we always worry with colds, so a lot of saline and nose sucks were under way. The little girl was miserable.

On Tuesday, Lily had an appointment with her new nephrologist. Our pediatrician sent her back to him, even though her next appointment with him wasn't until January, because Lily has had two urinary tract infections since June. He's considering putting her on a prophylactic antibiotic. Apparently, because Lily has the pelvic kidney and it sits lower than normal, UTI's just may become common. Hence, the need for always having an antibiotic in her system.

On Wednesday, Lily had an appointment with the pediatric surgeon to get her button changed to a bigger one. He wanted to wait until next month to change it out, but there had been a good bit of leakage that morning, so he replaced it--still with the same size button. We'll still change to the bigger size next month.

That afternoon, Lily vomited a little, probably because of the drainage from her cold. Then she spiked a fever of 102.4 that night and vomited as soon as I got her milk in her. While her fever was down the next morning, she was still vomiting.

The next morning, I made an appointment with the pediatrician and called pediatric surgery to see if this was common behavior that accompanied a g-tube replacement. It was not, so they told me to go to pediatric radiology after her pediatrician appointment and get a scan of the tube area done. The pediatrician could find nothing wrong with her, but prescribed an antibiotic mainly for what he deemed a sinus infection and then wrote a prescription for a chest x-ray (since we were already going to radiology) just to be sure no pneumonia had set in.

Three doctor's appointments in a row. Three times driving to downtown Charleston, which is at least a 30 minute drive. Three times interrupting the not-so-strict schedule of lunch and naptime for Gabriel, and if that isn't enough, making him sit in those sterile rooms, usually strapped in his stroller (unless there happens to be toys in the room for him to play with). I have to say he is such the trooper, though. Three times paying for parking that is not in our budget and humbling myself asking the doctors to sign a sheet for mileage reimbursement. It was more than I could handle that day.

When we got into the parking garage, Gabriel's VeggieTales CD was playing a song that we had sung at church camp, "Give me oil in my lamp." That song was a prayer in my heart. A plea, you might say. Especially the line, "Give me umption in my gumption help me function, function, function."

When we got to radiology, Lily was asleep. I was watching her sleep and noticed how labored her breathing looked. Fear set in. When they called me to check-in, the receptionist didn't know about her g-tube scan. She seemed to the point where she wasn't going to register us for that one, but she made a few calls. As she was making her calls, I was sitting there thinking, Woman, this is not my day to make a scene. If you don't let Lily get both of these procedures, you're going to hear about it. No, you're going to hear this little girl's LIFE story. And I kept thinking how I just didn't want conflict. I didn't want to be that crazy woman everyone stares at.

I don't like conflict.

I teared up and started crying. The lady at the desk asked me if I was ok. I nodded yes. Are you sure? Again, I nodded. Just overwhelmed? Yes, I nodded. So much for functioning.

Lily got both scans. And everything was ok from both. No pneumonia. No g-tube wrongly misplaced.

We came home and gave Lily pedialyte, which she kept down for the most part, and started the antibiotic. This morning, Lily woke up feeling so much better. The stuffiness is, for the most part, gone and she has kept everything down (even though I haven't given her milk yet). I'm not sure if the vomiting was a virus or just a reaction to the phlegm. I do know that every time she vomited, she either coughed or sneezed right before it happened. You'd think you could chalk it up to the sinuses, but she had a little diarrhea, too.

So many variables involved. Sinuses? Stomach virus? G tube? Trisomy 18 taking its toll? It's been a little bit of a scary situation not being able to pinpoint what's wrong with her, but it looks as if we're at the end of it. It feels good to know when you succeed in fighting a cold, especially when your child has Trisomy 18.


  1. Hi,
    I've been following your post for quite some time. My daugther is with T18 & she is sometimes congested with phlegm. She just knows her way to cough or sneeze it out.

    God Bless Lily...

  2. "Give me Oil in my Lamp"--big on the preschoolers' hit parade! Not making light of the situation, of course. So thankful she is doing better...praying for her complete recovery...yours too.

  3. I'm so glad sweet Lily is feeling better. You guys continue to be in my thoughts and prayers.