GI Update and the pH Probe

Following some significant increases in reflux, plus communicating with our GI's office about setting up a pH probe study, we decided it would be good to have an appointment with our GI doctor last Friday (October 27). This was scheduled before the scare that took us to the ER a few nights beforehand, so it was good to have a follow-up already in place.

I don't have my notes with me--I'm writing this from the hospital while Verity's pH probe is in place and we are here for 24 hours of monitoring. But as best as I can remember, here are the main points from this visit:

* Verity's weight gain has tapered slightly; she only showed about 1-2 ounces of gain in a 12-day period.
* Verity had begun taking Zantac after our ER visit; Dr. S increased the dosage from 1ml to 1.2ml twice a day.
* Dr. S wanted to test her urine, and we learned the following Monday that Verity has another UTI.
     --She is now on another round of antibiotics (Septra).
     --We will schedule a visit with her PCM regarding her having two UTIs in a two-month period.
* Since we are having difficulties increasing the volume of breast milk (we had decreased to 85ml per feeding and are now today at 90ml), he asked us to try fortifying with Liquigen and gave us a sample bottle. (Thankfully this isn't like the formula fortifier we were using in March and April that unsettled her tummy so--this one's ingredients are much less suspect.)
* We all agreed the pH probe will give us valuable information about the frequency and intensity of the reflux, which hopefully will give us an indication of the best way forward for Verity. Two more extreme possibilities are a Nissen fundoplication and a G/J tube, neither of which is really on our radar, although we would consider a Nissen if it comes to it.

Following this visit, we had nearly a week before our pH probe was scheduled, during which Verity received her medications faithfully (thank the LORD for our new nurse who helps us with all of this!). Every single day this week, Verity has had more than one bath due to her vomiting. The good news is that she has been pooping daily--sometimes more than once!--whereas the previous two weeks she was on more of an every-two-days schedule. (Side note: peppermint essential oil. That is all.)

There have been at least a couple of times in the last week when Verity has not only vomited an exorbitant amount out her mouth and nose, but she has also stopped breathing long enough to make this mama panic. I was alone with her early this morning when it happened, and I haven't been that terrified in a long time. Now, of course, she is sleeping peacefully!! We are having the best nap she's had in I don't know how long!! I can't help but wonder if it will skew the pH study...

Which leads me to why we are here at the hospital: the pH probe! We had to be here at 10am for an 11am start time. It was already a stressful morning after Verity's vomiting/choking/not breathing episodes following what was to be her last feeding before coming to the hospital. (They needed her stomach empty for placing the probe...no worries there! Sigh.)

We spent about a half hour in a waiting room and 2 hours in a pre-op/procedure room. Well, I was in the room 2 hours. Verity was taken to get the probe placed, then came back, then x-rayed to ensure proper placement, and then we hung out until our room was ready. We finally started a gravity feed at 1pm, 7 hours after her last feeding! Poor pumpkin was hungry! Of course she fell asleep in time for us to have to move...

We hauled our stuff to the pediatric unit, and then we settled into our room, which we are sharing with a sweet little gal named Cheyenne. Finally Verity fell asleep, getting a 3-hour nap, possibly the longest uninterrupted sleep she has had for a very long time, since her daily naps range from 5-30 minutes and the last few nights she has awakened an average of 2-3 times per hour.

So, how does this work? The probe is placed in Verity's esophagus, and we have an electronic "diary" of sorts so that I can note a few pieces of information, which will then be compared to the pH levels inside her esophagus. I punch buttons to note:

* When Verity is upright and when she is lying down;
* When her feeds begin and end; and
* When she is vomiting (1), fussy (2), or having difficulty breathing (3). (Thankfully I've only notated the latter one time, and that was shortly after the probe was placed...we wonder if she may have been gagging a little. She turned red and didn't inhale for a few seconds, but it passed quickly, unlike this morning's scary episodes.)

So far no vomiting, which is wonderful! But we are praying that the 24 hours of monitoring will show a good picture of what Verity deals with on a daily basis. I have noted quite a few "fussy" times, and more often than not, the pH number is low (indicating acidity). It will be interesting to see how the night goes, now that she has napped so well in the afternoon (another half-hour nap followed the 3-hour nap!). I'm prepared to stay awake all night...my Facebook and blogs may explode, lol.

I don't know how long it will be before we get results from this test, but we will of course keep everyone posted. Thanks for praying!