The week following Teddy’s surgery was pretty straight forward. We settled back into a routine and started decorating Teddy’s bed area for his first Christmas! It was going to be his first Christmas and while we hoped we would be back on the main floor in a room before Christmas day, we wanted to make sure that when he woke up he would already start to enjoy the beauty of Christmas while in the NICU. We were told it would probably be a week before they would start to wake him up, so his esophagus had plenty of time to heal. With Teddy being stable and still sleeping, Jason needed to run back to Kentucky for work, so he reluctantly left us for the week.
While his esophagus was healing from reconnection, he stayed sedated and paralyzed to ensure his body had time to heal and the esophagus had time to heal without the potential for a tear at the connection site. He still had a breathing tube and was still on versed and morphine to keep him sedated and comfortable. His routine included daily checks by surgeons, multiple daily visits from the respiratory therapists, regular chest x-rays to check his airway and lung, and visits from the NICU doctors to make sure Teddy was stable and healing. Overall he was doing great, but he was still having some airway distress due to his right bronchus being slightly compressed because of his esophagus. They hoped once he was awake that would correct itself, so we kept plugging forward.
One issue Teddy was having though was that IV access was getting harder and harder to find. Teddy’s veins had always been a hard stick, they were just too small, smaller and more fragile than they should have been. When he was first born, he had to have IVs on his head because they were the only place that they could actually successfully place an IV. Even though he had grown over the months we waited for his surgery, unfortunately his veins were still bad. What this meant was that it would take multiple tries, even with ultrasound to get a successful IV and those IVs would have a short life span. His veins would blow out so easily, after just a day or two.. As a result, after Teddy’s second surgery, he ended up needing an IV in his head again, along with his central line he received in his chest during the first surgery. Over the coming weeks, this issue would become a much larger problem, but thankfully those first few days after surgery, the IV they placed in his head worked great and held sturdy.
One other change that took place after the surgery was that they stopped Teddy’s milk feedings through his g-tube and put him on TPN (a liquid IV nutrition). They do this to limit the chance of reflux occurring (which is very common with EA patients), while the esophagus is healing, since any acid could affect the healing of the connection site causing an increased risk of leaks and strictures. In theory, a child would only need about a week of healing before they are able to start waking up and getting full milk feedings again.
After about four or five days, they took Teddy in for testing to see if his esophagus had healed to determine if there were any leaks at the connection site. We were so excited to hear that his esophagus looked great! There were no leaks and they felt like he was in a good place for them to start waking him up. We were so excited! It was almost surreal to know that he was about to wake up. While it had not been the 3 weeks we were expecting, it had been 16 days since we had seen his eyes or even seen him move on his own, which felt like a lifetime. Jason was unfortunately not back from his trip home yet, but I promised to take lots of videos to send of him waking up and he would be back in just a couple days.
The first time he opened his beautiful blue gray eyes again, I absolutely melted. While we had stayed by his bedside pretty much all day long, seeing him open his eyes felt like the first time he was actually with us in over two weeks. He was still sedated and had a breathing tube, but he was there, looking at us and squeezing our fingers. I truly can’t describe what it felt like to see our baby again. He woke up just in time to meet Santa for the first time too. We still couldn’t hold him, but we were just so excited to see him awake again. It was so glorious and we lived in those first few hours and day, knowing the hardest part of his recovery was about to come. Jason got back 3 days after Teddy woke up and we were both so excited to see him. We then held our breath for the next step, weaning Teddy off the medications.
