This past Thursday and Friday was Kaitlyn's PH Probe test down at Primary Children's. I was dreading spending two days at the hospital with nothing to do but sit in a small hospital room. The day we had to check in was, unfortunately, the day of the massive wind storm that hit the Wasatch Front and caused millions of dollars of damage. I was worried about even getting down there. I made it OK and we got all settled in.
This is what the probe looks like. It is as small as an NG tube and went down her nose and into her esophagus. It measured the PH levels in two different places. We did have to have an x-ray to make sure the probe was in the right place. Of course within about 10 minutes of getting back into our room, she accidentally pulled the probe out. So it had to be placed a second time. She was thrilled. So was I.
This is the monitor that I got to carry around with me. Lovely. It showed the acid levels in both sensors. I also had to change the position on the monitor every time she laid down or was sitting. I also had to hit a couple different buttons when I saw her coughing, gagging or puking. It was a little more involved than I was thinking. Sigh....
To pass the time while there for 26 hours, we took many walks in a wagon. Kaitlyn really loved walking to the South Lobby to see this huge Train set. She would sit and watch the train go around and around forever.
Her packed into the wagon with lot's of pillows and blankets since she still doesn't sit on her bottom by herself. Then we add the oxygen and monitors and a toy... and it was quite the production. But she was happy and it made it worth it.
By the time we left friday night.... we were both wiped out. Me more than her since I didn't ever fall asleep there. I was up for 36 hours straight. It was just not fun! Kaitlyn fell asleep right before we were discharged and didn't even move while I loaded her in the stroller. She is sitting straight up in this picture and sound asleep. Poor baby!
Since we just got done on friday, I was surprised to get a call from Dr. O'Gorman with the results today!!! I probably shouldn't be surprised since I sat with her in the hospital cafe on thursday night chatting with her. She knew I was nervous about this test:)
Anyway, it was good news! Well depending on how you look at it. Basically the test came back borderline. Molly (Dr. O'Gorman... we call her Molly though!) said that things could go either way. She knows how I DON'T want to do surgery to fix Kaitlyn's Reflux unless there is NO other options. So as long as I abide by some restrictions.. she let me decide if we go forth with a meeting with the surgeon, or re-evaluate in 6 months as long as we do the precautions she wants. Of course I picked the re-evaluate in 6 months.
So what does this mean now?
Kaitlyn will for sure continue to sleep in her swing because under no circumstances can she lay down flat to sleep. I will have to watch what she eats so she doesn't get more than one acidic food per meal. She will tweak her meds a little and we need to make every single effort to do her meds on time, every single day and not miss anything. If she shows anymore symptoms we will revisit this sooner than 6 months.
So.... this was the best news. We know she has reflux... we know it's not getting better. But to find out that we can buy some more time to hopefully let her tone get a little better is the best news possible. I feel like doing a happy dance!!!!
The only other significant thing that they found was some tachycardia (high heart rate) that they want me to call her Cardiologist about. Her sats dropped a bit on a lower rate of oxygen while she was asleep, but nothing significant. But we do know (as if I hadn't been monitoring her at home) that she needs to continue on her oxygen.
Plus as of today she has a slightly crappy sounding upper airway. Super. We will be continuing Winter Isolation.