I got to the hospital yesterday to a very grave-looking scenario. The neonatologist had furrowed eyebrows, my child was screaming his head off, and nurses were putting in IVs. The doctor explained that Parker had a bad night-- periods of desatting down into the 70s (oxygen percentage from his pulse oximeter) with no known cause. They put him on insane amounts of support (5L flow at 100% when I got there), and it was helping, but not consistently. Due to the acute onset, infection was suspected. Could also be due to methadone withdrawal.
Sigh. I was sent to the waiting room while they got his line in, and I just felt deflated. We had been on such a strong course, rolling right along, and then WHAM! Hit the wall. I know everyone describes the CDH "roller coaster," and I was ready for another down to come soon, but it was still stinky.
I went back to his room and snuggled him up after his ordeals. He was none too pleased with the IV of antibiotics (they went ahead and started them pre-emptively even before the cultures came back, better to play too-soon than catch-up), and he was DEFINITELY not pleased with his urine bag. Yes-- we reached a new level of scrotal embarrassment... Only Parker. Imagine, if you will, a Ziploc bag with some adhesive around the opening. Now slap that sucker onto an angry six-week old. The object being, of course, to get a urine sample for culturing as you cannot very well tell him to pee in a cup. Bless his soul. Parker's manhood has been used and abused during this adventure.
I spent all day staring at him and trying to figure out what on earth was wrong. He was back up in the 100s on his sats, but I was disgruntled about him being on such tremendous amounts of support. I just felt like SOMETHING wasn't adding up, and the longer I sat there, the more I became convinced that something was wrong with his respiratory equipment. Because he's on high flow oxygen, he sounds like a little baby radio set on static. Each time they've lowered his flow, he's gotten quieter. Yesterday, he was supposed to be back on higher flow settings, but it was quiet. Too quiet. Added to that, the temperature setting on his humidifier (it adds water to the oxygen/air mixture to keep his nasal passages moist, and it heats the water to body temperature) was going haywire. It jumped around about 15 degrees within a few minutes.
About that time, Parker desatted back into the 70s, even on that much support. The nurses were befuddled. The respiratory therapists were called in, and I said, "Something is wrong with the equipment." They tried repositioning him, listening for flow sounds, nothing. Again I said, "I think it's because something is wrong with his flow." I pointed out that the humidifier had been acting up, and the respiratory therapist went over to look at it. As she put her hand on the tube from the 02 meter in the wall to the humidifier, lo and behold, I heard baby radio static came back. "Whatever you just did fixed it," I told her. Then it went away again. I told the nurse by Parker's head to listen to how quiet it was, then as the respiratory lady was trying to troubleshoot the problem and moved the right tube again, even she said that she heard what I was talking about.
Long story short, they switched out all the meters, tubing, humidifier, nasal cannula, EVERYTHING on his respiratory circuit. Within 5 seconds his sats were back at 100. They weaned him a bit at a time, and he still was at 100. I was excited-- little old me was able to figure out the problem, and that's only because I spend so much time there and know how things are supposed to sound. I have no clinical training of any sort, but I do know when something is different in my baby's bedspace.
I'm not upset about it, really, past being annoyed that we lost an entire day on something that turned out to be an easy fix. Parker's none the worse for wear minus some free antibiotics and the shame of the scrotum sack. Doctors and nurses are trained to look for medical reasons their patient is feeling poorly, and that's what they did. The machine was working fine all day, I just so happened to be sitting right by it when it started acting up (for what was obviously the second time, once over night causing the initial ruckus) and we were able to get it fixed and get the P-nut back in tiptop shape as soon as possible.
All of that to say, I have felt way over my head in the NICU, and Lord knows I have no knowledge to contribute to Parker's care. Mike and I sit on the sidelines, listening to everything that is said and asking any and all questions we have. Our questions get answered, and we feel like we definitely understand what is going on, but yesterday was the first time I felt like I could be an active contributor to fixing something. It might have turned out to be a complete idiot thing to say "Something just SOUNDS wrong," but it wasn't. Thank goodness we are in a place with medical staff who would never say, "Whatever, Mom, sit in the corner and let us do our job." They stayed in Parker's room until they heard what I was describing, and solved whatever problem was causing it. In the end, the simple answer was the right one, Parker is back where he started, and I have gained a tremendous amount of confidence in myself and my Mama Bear instinct.
Now, on to bigger and better things!