Teddy's Story

Chapter 15: The Longest 16 Hours of Our Lives

We woke up on the day of surgery with excitement and fear.  We were so excited to finally be at Teddy’s repair surgery but were also worried about how Teddy would handle the massive surgery and also about what the following weeks would bring.  Teddy also seemed to be excited about the future.  He was all smiles and cuteness, which made knowing we wouldn’t see those smiles for a few weeks even harder.  We spent the hours before the surgery playing with him, holding him, and loving on him as much as we possibly could. Unless you have been through it, it is hard to describe how you feel in those hours before sending your tiny baby into a massive surgery with loads of risks, but also significant rewards once done.  I tried so hard not to think about it, but the fear of losing Teddy on the operating table made me physically ill, but at the same time I knew it was something that HAD to happen at some point and ultimately would give him a better quality of life. I just stared at his sweet face all morning and constantly repeated how much I loved him and how proud we were of him. 

It was finally time to head to pre-op and they wheeled Teddy down, while Jason and I followed along.  We got into the pre-op waiting room and began the long process of all the doctors, anesthesiologists, nurses, etc. coming by the bay to explain what would happen, the risks, and to have us sign the waiver forms. They told us to expect it to be a longer surgery, at least 6+ hours. They were all so amazingly nice and comforting, but I was glad when the steady stream of people slowed down so we could focus on Teddy.  My anxiety was through the roof, but I tried to stay upbeat, singing to Teddy, playing with him, and loving on him.  Jason did the same, but anyone looking at us could tell exactly what was going on inside. When the time came to take him back to surgery, they did let me go back with him to be there when he fell asleep.  Jason gave as many kisses as he could and then they wheeled us back to the prep room and got us set up to start Teddy’s anesthesia.  They prepped me as to what would happen and told me to expect him to shake a little while he fell asleep.  I was able to hold him, while they put the mask on and I sang to him “Wheels on the Bus,” which was his favorite song at the time, as he fell asleep.  He looked a little unsure of what was going on, but we kept eye contact, and I sang to him “The mama on the bus says I love you; I love you; I love you” as his eyes closed.  They had me lay him on the table and give him a kiss.  With tears, I told him he was not allowed to do “any funny business” and that I loved him and was so proud of him.  I still say and do the exact same thing before any surgery.  Then they lead me out of the room and into the surgery waiting room. 

Jason and I checked in at the waiting room desk and gave them our phone numbers.  They told us that someone would call us every hour and half to give us an update on how the surgery was going and told us where we could sit, etc. The Boston surgery waiting room is different from any other hospital we have been in.  While there are two rooms with the typical lined up uncomfortable chairs, there is a long hallway area, lined with huge windows, that had more comfortable chairs situated in “family” set up.  Since it was still fairly early in the morning, we were able to get one of these areas by the windows and get settled in for what we knew would be a long day.  My mom had come into town a few days earlier to be there for the surgery, so she joined us at some point that morning and we all sat there basically staring at each other full of anxiety and worry.

While I am not an extremely superstitious person in general, I do find myself around Teddy’s surgeries ensuring we repeat the same things we did in successful surgeries, for all future surgeries.  I have no idea why, but it brings me comfort and I feel like if it worked the first time, then why mess up a good thing?  What I can say from that day is that I COULD NOT bring myself to leave my seat. Every time they would ask me if I wanted to take a break, I could not do it. I would get sick to my stomach thinking about it.  All I could think was if I walked away, what if something happened and I wasn’t there?  Or what if I missed the update or them calling to say he was done?  To this day I cannot leave the waiting room when he is in surgery.  So thankfully Jason and my mom had the strength to ensure we were fed and taken care of.  Jason went down to Au Bon Pain in the hospital and got us breakfast (and yes, for every future surgery there, Jason would go and get me the exact same breakfast).  My mom went and got us lunch at some point. I stayed sitting in my chair binge watching the new Gilmore Girls seasons series or was up pacing back and forth down the hallway.  My phone never left my hand the entire time and anytime our update call was a little late, I started to panic. 

I honestly do not remember what time his surgery started, but I do remember that the first update phone call was the nurse letting us know that they were running a little behind because they had struggled to get Teddy hooked up to the IVs he needed. We knew Teddy was a hard stick for IVs when he was first born, but we would soon learn that his veins had not improved and for the next several years, Teddy would struggle with getting IV access.  The nurse said they finally did manage to find a few good veins and the surgery had started.  The next several updates consisted of things like “Dr Jennings is working on the airway or the esophagus” and “Teddy is doing well.”  At some point, one of the residents came out and let us know that they were not able to do a traditional repair, so they were working on doing the Foker procedure.  They assured us Teddy was doing well.  Six hours passed and we were still waiting. Then eight hours passed, and we were still waiting.  I believe around the 10-hour mark, Dr Jennings came out and gave us an update.  He explained that one of the residents was working on Teddy at the moment, because Dr Jennings needed a little break.  He explained that things were taking a little longer than expected due to Teddy’s anatomy and because his airway was worse than anyone had expected.  He told us he would be back to update us further later. 

We waited and waited and waited and I grew more and more and more anxious.  I was physically unable to sit still and felt extremely sick.  Day turned to night, and we waited.  Then we finally got the call they were wrapping up.  At this point it had been about 15 hours and we were basically the last people in the waiting room.  Dr. Jennings came out and explained the surgery and let us know Teddy was being closed up and would be heading to the NICU.  He threw a lot of information at us, but the gist of it was that his gap was a little too long to be able to do a traditional repair, so they did complete a Foker.  Due to Teddy’s unique physical anatomy, smaller ribcage and missing lung on the right side, as well as where a few other organs were due to these anomalies, they struggled to get everything lined up correctly and ended up having to remove Teddy’s Thymus gland because it had grown into the only open space they could use.  The Thymus gland is the gland that produces T-cells that are essential to the development of the immune system.  He said he was able to leave a small piece that he hoped would be enough for immune support, but also said that people are born without it sometimes and it would just be something we needed to keep an eye on.  They were finally able to complete the Foker, which consisted of small thread line lines being attached to both the top and lower pouches of the esophagus. Then those threads were pulled through his back where the surgeons would have access to them.  Each day those threads would be tightened slightly to stimulate growth of the two pouches, so they could eventually meet and be reconnected.  It is a fascinating procedure, that I will do a more in-depth post on later. 

He then told us that the main issue they faced was that Teddy’s airway was much worse than anyone expected, and he was floored that Teddy was able to maintain his oxygen levels on room air.  He told us his airway was one of the worst he had ever seen (although I do think Dr Jennings is famous for that line.)  Essentially, Teddy had severe tracheomalacia, which meant his airway was very floppy and closed down on itself.  Teddy ended up needing three tracheopexies, which means they take part of the airway or blood vessels pushing on the airway and attach it to the spine or breastbone to help keep the airway open. We had not been prepared for this part of the surgery, but we were thankful Dr Jennings found these issues and corrected them. He said overall Teddy did great and handled it all extremely well. He let us know once he was closed up and in the NICU, we would be able to see him. He did prepare us that he would be a little swollen and due to the Foker that he would have a breathing tube, be paralyzed, and sedated for the next few weeks.  All told, Teddy’s surgery from the time he fell asleep to when they closed him up was about 16 hours. 

Jason and I rushed up to the NICU waiting room and paced the floor until they let us in.  By this point it was after midnight and the additional wait at the NICU door was killing us. After an hour of waiting, they finally let us back.  I can remember as clear as day walking into the huge NICU, turning left, and following the nurse to the back corner of the NICU. I remember walking down the aisle and seeing Teddy for the first time, which took my breath away.  While they had warned us, he would look different, I don’t think I could have ever pictured in my head what we were about to experience. That morning we had our tiny beautiful little baby, who was all smiles and coos, and now our beautiful boy was covered in wires and tubes, swollen to at least twice his size, if not more, and not moving fast asleep. He had an IV in his head and arms and a central line.  He had a chest tube and a breathing tube.  He had the thoracotomy incision and Foker threads. He was covered in monitors and so many other things. He was stable though and had handled the surgery well.  We both did our best to keep it together and jumped right in to help the nurses with anything they would let us do.  The NICU nurses immediately fell in love with him and by the first hour there, he had already had a nurse sign up to be his primary nurse and she would ultimately become one of our saving graces during our time in the NICU.  

That day had been one of the longest we had experienced, and we tried to prepare ourselves for the coming weeks and future surgeries. There was no way to prepare for the future rollercoaster we would all be on though…

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