Getting a phone call in the night is never a good thing when your kid is in the hospital. I still remember that night like it was yesterday. The phone going off, looked at it, and swore because it was the hospital. I answered it with trembling hands.
The Intensivist started to explain what was going on; Adeline wasn’t doing well. They were getting nervous that they were running out of time if they didn’t act. Overnight, Adeline’s saturations were continuing to dip as well as her general condition. She was still stable enough that they could get her to the OR and get her on ECMO. If they didn’t do it now, they would have to risk doing it as an emergency, right in the room. That would be less than an ideal and would be very risky regarding infection.
I remember the Intensivist kept talking, but I couldn’t hear her. I told her we just needed to get off the phone with each other and we would head over. Luckily, since we were staying at the Ronald McDonald house, we were not far away. I just wanted to get to the hospital and maybe I would be able to process what she was saying to us. Finally, I just had to cut her off and tell her we would be there withing 15 minutes, which is about what it would take to walk, or should I say run, there.
When I got off the phone, Jeremy was already getting ready and I followed suit. I was just crying. How was it that less than 24 hours ago we were talking about switching her to a conventional ventilator? I thought she was getting better!
Now, we were going to have to send our child off to be put on life support. Since we were not in our best mindset, we knew there had to be someone to blame! Not?! This surely could not just happen! We were just out of our minds.
Getting to the Hospital
When we got to the hospital, we walked up to Adeline’s room. All the lights were on, several nurses and doctors were in the room trying to get Adeline ready to go to the OR. I just couldn’t think. Just about that time, the surgeon, Dr. Dearani, walked in. We looked at him in desperation and told him our feelings, all which were filled with fear.
They were telling us the day before that she was getting better. She was about ready to go back on the conventional ventilator! Was this an overreaction? Surely, she couldn’t be doing as poorly as they were saying she was!
Dr. Dearani went on to give us the pep-talk we needed. He was understanding, yet also concerned with Adeline’s condition. Putting Adeline on ECMO would allow Adeline’s heart and lungs to rest and get better. This was what she desperately needed, her body to rest. She had just had heart surgery, the ileostomy, and then to add the flu on top of it. We didn’t want to push her too far.
After our talk with Dr. Dearani, we agreed that it was best to put Adeline on ECMO, no matter how scary that looked. It was what her body needed if she was going to continue this fight.
Scary, but the right decision.
We walked back to Adeline’s room as they finished preparing Adeline to go to surgery. We just watched on from the hallway. Finally, it was time for Adeline to go. They called us in to say goodbye before she made the trip. We understood it was possible that it could be the last time we would see Adeline. We gave her kisses, told her to be strong and they rolled her away.
After Adeline Left For Surgery
We felt so helpless, and one of the nurses could tell the distress we were in. She brought us back to one of the family rooms and talked to us a little. She told us how things would work with updates and tried to reassure us. At this point, we were so distraught we could hardly think.
The nurse left us alone to go get the room cleaned up and ready for the next shift. We sat alone in the room, saying prayers repeatedly. Finally, as we were starting to calm down a little and it was time for me to pump.
I got up to head to the pumping room…the tears that room has seen.
As I was pumping, I decided to call my mom. It was still a little early at this time, around 6 am, and I am sure I woke her up. When I had her on the line, I broke down immediately and started crying. I went on to tell her how Adeline was being put on life support because she was just getting too sick. I could hardly talk I was crying so hard. She started crying too.
I told her Adeline had went down to the OR and that I would let her know how Adeline was doing. She said she would be praying that everything would go well and that this was the best decision for Adeline.
I went back to the family room while we sat and waited. Finally, we decided we would go back the Ronald McDonald House to just quickly freshen up since we knew it would still be awhile. After getting back to the house, we decided to reach out to the rest of the family to let them know what was going on. Even though everyone was very supportive, we told them to continue with their day and we would keep them updated.
After quickly freshening up, we headed back to the hospital and the rest of the day was crazy.
Adeline did great in the OR; they had intervened right when they should have. We were thankful for that. The ECMO machine was large for our smaller ICU room. And, the ECMO machine came with its own nurse to manage the machine. So, the room got even smaller.
The machine was a scary looking. It had pints on pints of blood running through the lines. It took close monitoring to be sure that blood wasn’t clotting on the lines, which could be a disaster if it were to break loose.
The machine was what was keeping Adeline alive. If that machine stopped or had a major problem, it could mean her life.
The ECMO machine also meant constant lab work. So much monitoring, it was crazy. For the rest of the day, even though Adeline’s room was in isolation, we still had several doctors, nurses, and lab techs checking on her condition.
It was such a long day.
Then, we went to meet with the surgeon to have a deep discussion about expectations of where Adeline was headed. The thing we appreciated about Dr. Dearani was him being blunt. He went on to tell us that Adeline was a ship in a hurricane. She still had a way to go before she was out of it and he wasn’t sure what the other side would look like. The damage her lungs had endured was quite severe. There would be a good change that Adeline would end up needing a tracheostomy. This was so scary to hear given we came in initially for something so different. What would that mean for our life?!
What he told us shook us up a little, but it was what we needed to hear. We knew what the possible outcomes were, and I always like to feel prepared. I was grateful to know what the possibilities were.
After a long day, it was time to head back to the Ronald McDonald House. We were so exhausted, both mentally and physically. We needed to try to rest so we would have the capability to process information when we needed to.
Hopefully this would be the last of the surprises from Adeline for a while. It was getting too exhausting having one after another. I just needed a break so I could gain knowledge as to what was going on and where we were potentially headed.
What were we going to do? I was supposed to head back to work in a few weeks. My goal was to just take the 8 weeks off, not the 12 that I received with the Family Medical Leave Act. And, if Adeline needed a tracheostomy, how would that change things? With a tracheostomy, Adeline would need 24-hour care.
How long was Adeline going to need ECMO for? Dr. Dearani said it could be longer than we would have thought. Hopefully, it wasn’t going to be the several weeks he warned us of. And, even more so, hopefully recovery wouldn’t be as long as warned us it could be.
Time would tell.
Also, as we had more time to process, we forgave the situation at hand. There was no one to blame, it was just happening the way it was supposed to. Nothing anyone did or said could have changed things and we accepted that. It is hard not to blame when you are in crisis mode. But, blaming doesn’t fix it, it doesn’t change it, it just causes hard feelings and keeps you from moving forward. I feel as though having the ability to look at the situation like that helped us heal and develop deeper relationships with the staff.