Time went by so slowly during Adeline’s PA Banding surgery. It is like watching paint dry, except you must add anxiety into the mix. I had brought things to do while we waited, but I really couldn’t concentrate.
We sat in a large waiting room full of people. But, these other people, families, their loved ones were more than likely much older than Adeline. I wondered if they were feeling the same way I was, nervous about the surgery outcome.
Once, a person made a comment to me that completely made sense. It is always hard when little kids have severe heart defects, or really any kind of defect. These kids do not set themselves up for their health problems like many (but not all) adults do. But these kids just buck up and do it, and the way they recover, it is just amazing. They are my heroes!
Did these other families sit here now, wondering what they would do differently from now on?
Anyways, I watched my phone so closely that day. We would get periodic updates about how the PA Banding surgery was going. We didn’t have any additional family with us that day, so we would update the family periodically, letting them know we still hadn’t heard anything yet.
Finally, a little after lunch time, the nurse came and got us to go meet with the surgeon. The main part of the PA Banding surgery was done!
We went and met with the surgeon where he told us that surgery had went well. He said we were going to have to keep a close eye on the band, as it was a little loose. He felt this was an ideal situation as it would give her time to grow into the PA Band. Having that time to grow into the PA Band would allow us to do her next surgery, the Glenn, when it was right, not when we “had” to.
The surgeon had some pictures of Adeline’s actual heart with the PA band for us. He pulled them out of the envelope and showed Jeremy, because I just wasn’t ready to look at that. There was a reason why I wasn’t in healthcare, after all!
We shook the surgeon’s hand and he led us and the nurse out of the room. He warned us it would still be a few hours before we would be able to see Adeline but assured us again of how happy he was with surgery.
We went back up to that waiting room to wait some more. At least we knew that the surgeon said it went well. Hopefully, that also meant recovery would go well, and we could resume our lives sooner rather than later.
First Seeing Her
This is the another thing no parent is every prepared for-seeing your child with a breathing tube down their throat. This is especially true when your child is just a baby, so small you have hardly had any time to bond with them yet.
Not only was Adeline breathing with the assistance of a breathing tube, but she had so many machines hooked up to her. Here I thought she had a lot of machines hooked up to her in the NICU. I was wrong!
The room Adeline “landed” in was a shared room. On the other side of the curtain there was an adult patient, whose wife complained about how there was now going to be a baby sharing the room with them. At least the room was large and provided plenty of room for all of us.
On our side of the curtain, the room was very busy. We had the nurse who was finishing up getting everything situated from surgery. There were lab techs, ICU Consultants, Physician Assistants/Nurse Practitioners(mid-levels), additional nurses helping as well as PCA’s. They all worked like well-oiled machines.
One of the nurses grabbed us chairs so we could sit in the room with Adeline. They told us we could come up to the bed and see Adeline, but I wasn’t ready. I knew I would start crying, so I coped by keeping my distance. Just observing the hustle and bustled and attempted to read my book was probably the best bet for me. I mean, I would wake up from this dream eventually, right?
After things started getting situated, the mid-level ordered an ECHO to make sure everything was going alright. The technician quickly came in and did Adeline’s ECHO. After she finished her part up, she called the Cardiologist to take a look at the images.
When the Cardiologist came by, he looked closely at the images. When he finished up doing his informal analysis, he said he was very happy with the way things were looking. He also talked to us about what the surgeon had told us. The PA Band was probably a little loose, but that was the more ideal situation to give us time. Before he left, he told us that if everything continued to look alright, that Adeline’s breathing tube could be removed(extubated) that evening.
We were very happy with that news! On track to a quick recovery!
Within a few hours, something wasn’t right. Adeline’s tummy was expanding, and they didn’t know why. They were running labs, and nothing appeared obvious. By this time, the evening ICU Consultant was coming on. The two discussed how maybe they would attempt an ultrasound to see if they could see anything. They also decided they had better do an x-ray.
During all of this, we just watched on, but not overly worried. I mean, the doctors were the experts, it was going to be ok. If we needed to be concerned, they would tell us, right? Earlier in the day, the nurse had encouraged us to get some rest that evening, so we left and headed to my aunt and uncles for the evening.
WE WERE SO OBLIVIOUS!! But this was probably a good thing at this stage of the game.
The next day, things got a little more, well, interesting.