Tuesday, June 17, 2014

Week 43: Take a deep breath

Today we had an infant pulmonary function test.  This has been on the calendar since the great April plague. The doctor we saw then (not Lemon's usual doctor) thought it would be a good idea to thoroughly check how his lungs are doing, since lung function deficits can be really hard to pick up in infants during a regular clinical exam.  I asked Lemon's regular doctor, and he too thought it would be a good idea.  I was a little hesitant since the test itself is a pretty big deal, and Lemon's health has generally been very good, but since both doctors agreed that it would be useful, we decided to go along with their recommendation.

The reason the test is a big deal is that, whereas older children and adults can follow instructions about when to breathe in and out and so forth to test their lung function, infants can't.  So, instead, the infant has to be sedated, and then hooked up to an instrument that can execute all the desired breathing actions for the baby.  Our hospital has an nSpire Infant Pulmonary Lab, which you can read more about here if you like.

We were told that to prepare Lemon for the sedation, it would be a good idea for him to be really tired (about 3-4 hours sleep deficit).  So, we kept him up until almost 8:30 on Monday night, about 2 hours past his usual bed time.  We basically kept him up until he was doing nothing but lying down on the floor and closing his eyes, at which point we put him in the crib.  Then, we got our things organized for an early departure, and went to bed.  At around 11pm, a violent thunderstorm began which woke me up (not Lemon or Papa Bear, though!).  At about midnight, the tornado sirens started going.  At that point, I woke Papa Bear, we grabbed Lemon, and headed for the basement until the sirens went quiet again.  Of course, by then it was after 1 a.m. and my alarm was set for 4:30, so I basically just dozed off and on the remainder of the night as the rest of the storm system passed through. 

At 4:30, I woke Lemon up and he and I played and did PT in the pre-dawn hours.  He was in amazingly good spirits for having gotten very little sleep and no breakfast.  At 6:45, we got in the car, with Papa Bear in the back seat to make sure Lemon didn't fall asleep en route, and headed to the hospital, arriving right on time for our 7 a.m. appointment in the sedation clinic.  They weighed and measured Lemon, and then we waited.  And waited.  And waited.  Luckily Nona was there to keep us company, and to remind me of more songs that we could sing to keep Lemon amused.  Lemon continued to be in an incredibly good mood given the state of affairs, laughing and smiling with the nurses whenever they came to check on him.

Finally at around 8:30 we were told that the equipment was ready for Lemon's test and that he could be sedated.  A nurse gave him the medication, and he basically fell asleep instantly.  Then we waited a little more, and then carried him into the next room where he was placed in the chamber of the machine.  About two hours after our arrival, we were finally ready to start the test.

Unfortunately, although we humans were ready, the machine had other ideas.  In spite of having a clean calibration run before we put Lemon in, as soon as the techs tried to get it to actually run the test protocols, it became clear that there was an air leak somewhere, and they weren't getting any accurate readings.  Hilarity ensued, involving the phrase "Does anyone here have a portable telephone?"  A call was placed to the company that makes the machine, and they tried this and that with tech support on the line to no avail.  At this point we'd wasted about 45 minutes which was a big problem, because the sedation only lasts about 90 minutes typically, and the test is supposed to take about an hour.  So, the more time we wasted, the greater the chances were that Lemon would wake up before the end of the test, and the doctors wouldn't get the lung function data they wanted.  In my sleep deprived state, I really couldn't handle the idea of not getting the data we wanted and having to repeat the whole thing sometime down the road.

Fortunately, one of the things the techs did finally worked, and they got a few good readings.  Then things broke down again, and they had to disconnect the mask while they fiddled around with one more piece of tubing.  I think over the course of our test, they replaced every tube on the whole machine at least twice.

Eventually, though, we were off to the races.  Luckily for everyone, Lemon gets his sleeping abilities from Papa Bear's side of the family.  So, even though the test wasn't completed until almost two hours after he'd been sedated, Lemon remained sound asleep through the whole thing, including having a vest kind of like a giant blood pressure cuff placed around his chest and inflated really hard repeatedly.  Amazing.

Once all the data had been collected, we went back to the sedation room to wait for Lemon to wake up--true to form he stayed asleep for almost another full hour, in spite of the nurses sort of poking at him to try and get him up.  Once he was up, he was in his usual sunny little mood, smiling and chirping at everyone he saw.  Eventually they let us go home, where Lemon ate a giant meal, took another significant nap, and was ready to resume his regularly scheduled activities of cruising around along the edges of the furniture and throwing things on the floor.  After all that we still don't know the results of the test--the techs who administer it aren't allowed to interpret the results, so we are waiting for a call from the pulmonologist with the interpretation.  More next week. 

1 comment:

  1. one key to asking for everything (and it sounds like you did this from reading), esp big deal things like this (and you probably already know all this but I'll chime in anyway, just in case) is to ask how whatever is done will change management. Like, say his PFTs were less than expected but clinically Lemon is doing great, would you change anything? It's so hard to be a patient and know how to advocate for oneself (although I think from reading your blog you and big D do amazing jobs of that!).