Thursday, January 28, 2010

I've been inspired: Our IPL story

There is so much I want to write about today since we had our annual clinic visit yesterday. When I say "annual clinic visit" it's really meant to be were we review the last year and make new goals for the upcoming year. But really, for us, it's not too much different than a routine (read: every 2 or 3 month) clinic visit.

But I'm not talking about yesterday's clinic. I'm talking about our experience with IPLs, or Infant Pulmonary Labs...the infant version of Pulmonary Function Tests (PFTs). See, what happened was, I just read another blogger's experience with taking her son to his first IPL and was thinking about our first attempt and first real IPL. She spoke about her experience with her son and I thought I could offer our perspective as well. And it will help get my mind off of our news from clinic yesterday.

Let me start this by saying I am not a medical professional. I'm just a mother who has gone through this one and 3/4 times. :) Yes, my experience and advice are editorialized. I'm a blogger. It's what I do. If I missed a responsibility of a team member, I apologize ahead of time. Like I said. I've only gone through this one complete time.

So this is how it goes, at least, it's how it went for us:
Samuel's IPL was scheduled at 1:00. We needed to check in at 12:00 noon. Once checking in, we went to the area of Phoenix Children's Hospital where they conduct various sleep studies. In same hall with us were other exam rooms. One had a scale where we had to get Samuel's current weight, as in, weight that instant, to calibrate the machine. While the machine was being calibrated, we answered various questions about Samuel's day, last meal, last drink, current meds, etc. and kept him awake. The machine calibration always seemed to take longer than I thought it should.

By about 1:00, it was time to start sedation. The sedation of choice: chloral hydrate. It tastes bitter (I'm told) so giving a hungry, sleepy infant, a bitter tasting liquid doesn't seem very nice. The first time we attempted the IPL, our nurse also had some sugar water on hand to help it go down a little easier. I appreciated this gesture.

Note that we did not need to put Samuel in a hospital gown but I made sure to dress him in comfortable clothing free of hard buckles or buttons that could hurt him when in the vest-like contraption.

Once Samuel went to sleep, which took about 15 minutes to make sure he was in a deep sleep and not just dosing, we put him in the boxcar. It's not really a boxcar, but it looks like one. Once laying down, they put his arms in the vest, and a bladder on his chest, used to expel the air from his lungs during the test. The vest hooks up to various tubes. They also put a mask on his face, sealed tight with medical putty. There are also various hoses an tubes coming from the mask. Also, he had a monitor attached to his foot (I think) to track his vital signs.

The test was done in two segments. The first half tested Samuel's lung function. The second half repeated the first but after administering Xopenex. From the time he got in the box, it took about an hour. Although we were able to watch the test being administered and real-time results, I had no clue what I was watching. I found it more interesting to follow the nurse.

There were three staff members with us during the test: the physician administering the test, respiratory therapist, and nurse. The physician actually performed the test and tracked results. The respiratory therapist made sure the materials were appropriately sized and fitted, and administered the meds at the appropriate time. A nurse helped with getting Samuel's weight and served as his advocate during the process. She tracked his pulse and blood pressure routinely. She also helped rock him to sleep and wake him up at the end of the procedure. (Can you tell I spent more time paying attention to the nurse?)

After the procedure was finished, we had to wake Samuel up to make sure he was able to swallow without choking. He had some apple juice and was able to go back to sleep. While he was being woken up, the physician was able to print and and review the test results with us. It was great not having to wait for these results but having them instantly.

Needless to say, Samuel's sleeping and eating routine were a complete wreck that day. I tried to not let him sleep the entire afternoon so that he would rest at night. I also tried to catch up on lost meals by giving him frequent snacks when he was awake.

You can read about our first attempt, and first real IPL on the links provided, but I'll give some pointers. Hanging out with a hungry, sleepy, cranky baby isn't really a lot of fun. So here are some of my suggestions. Do what you want but this is what worked for us.
  • Take advantage of the cut-off guidelines for feeding and drinks.  If the nurse says no milk after 9:00 am, then feed until 8:59 am. No clear liquids after 11:00? Keep water there until 10:59. No need to make them suffer for longer than necessary. And really, they might not even notice. Yes, I said might. Samuel was more concerned with not being able to sleep.
  • As painful as it is, prepare to party! Keep him or her awake, no matter what. We ran errands because I knew it would keep Samuel occupied. But if, for your baby, it means going to the park or swimming in the morning, do it. Stay busy and have fun. There is no reason to make the entire day miserable for your child.
  • Prepare to wait. It stinks. When you get to the hospital, or where ever you are having the test done, know this: it won't be as quick as you'd like. For us, we had to register at the hospital which meant staying the waiting room for a while. Once registered, we still had to wait for the machine to be calibrated. Trust me, it seems like it takes forever, but it has to be done. Just try to hang tight.
Please let me remind you: I am NOT a medical professional, although I am planning on it. This review was simply from my perspective as a mother.

I hope my review helped prepare you for what to expect at your child's IPL. The process can be quite intimidating but it's worth it. If you have any questions or I left anything out, please feel free to ask.

1 comment:

CFMama said...

Oh so familiar your experience was. I unfortunately did not get instant results. I am not sure if I ever got clear results since I think my son was the guinea pig. Sigh.