When we arrived at the hospital at 6:45AM yesterday (Thursday), we expected to be home around 2PM. It’s now 8:47PM on Friday night and we are awaiting discharge from Peds.
Leah’s procedure took a bit longer yesterday – I think she was in the OR almost 2 hours or so – because they injected steroids into her esophagus to help with the inflammation and scarring, in the hope that it would keep the stricture from continuing to tighten. Prior to the procedure, Leah’s temp was a TINY bit high (98.8) and she sounded a TINY bit junky, but since she hasn’t been sick, we went ahead with the procedure.
Afterward, Leah was super-fussy, as usual, but this time they wouldn’t let us feed her until she was transferred from the recovery area to the discharge area. When she arrived at the discharge area she was feeling a little bit warm and her temp was about 100.3. They were getting ready to discharge us when I noticed that she seemed to be retracting a little bit – using her abdominal muscles to breathe. They called the anesthesiologist over to look at her and he suggested that she might be agitated from being hungry, so we could try feeding her and seeing if that helped with her breathing. She was also sounding a little junky (in her lungs), and was having a tiny bit of wheezing on exhalation (I wouldn’t call it stridor but it was going in that direction). We fed her and tilted her neck up at the doctor’s suggestion, and that seemed to help with the retractions, but after a while they started again, and her fever went up to 100.6 (don’t worry – that’s as high as it got). After a long chunk of time had passed, she was still pulling a bit to breathe and still sounding a little icky and still had the mild fever, so with all of those little things plus the fact of this being the first steroidal injection, they decided to keep her overnight for observation and also to do a chest x-ray to see if aspiration was causing the “junky” sounds from her lungs.
Well. The peds unit was short on rooms at the time, so Leah wound up having her chest x-ray in the discharge area. We spent a good several hours in the discharge area waiting for a room to open up on “the floor” (as they call Peds). While we were waiting, Leah’s GI doctor came by to discuss the x-ray results with us. Her lungs looked fine, but the radiologist had seen something suspicious in the upper GI area and wanted to run another x-ray in case it was just a poor film. So we waited another couple of hours, and they took the second x-ray just before they brought her up to Peds. For reference’s sake, Leah’s surgery was at 8:30AM, she got out about 10:45AM or so, and Leah was rolled up to Peds at around 5PM. We did a lot of waiting yesterday!
We had a pretty mellow evening and got to see some familiar faces; Leah’s RT had treated her many times in PICU, and her overnight nurse had also cared for her several times. It wasn’t a bad night. They stopped Leah’s feed at 4AM, with the plan being to run a contrast study some time around or shortly after 10:00AM to determine what was going on in Leah’s chest – the second x-ray was not particularly helpful in determining whether something was wrong.
Well. 10:00AM turned into 1:30PM, which turned into 2:30PM, which turned into 3PM. I went to radiology with Leah and kept her entertained during the breaks; they had her ingest contrast, so they had to take breaks to give the dye time to move through her bowels. For most of the study they didn’t see anything wrong, but in the very last “take,” they finally saw what they had been looking for. Leah has a diaphragmatic hernia, which means that a segment of her bowel is poking through her diaphragm.
That’s about all I can tell you right now. We have many questions, particularly because this is usually a congenital defect that is detected either prenatally or immediately after birth when the newborn goes into respiratory distress. It is also possible that this is an acquired diaphragmatic hernia caused by trauma to the area, e.g. abdominal surgery (because yeah, that happened!). We really have no answers right now beyond the diagnosis. They are sending us home tonight since Leah is stable and relatively asymptomatic, and we will see Leah’s surgeon in the clinic on Monday to discuss plans going forward. The repair is surgical, and the big question is whether they do the repair now or wait.
So. Now, we go home!