Adeline Starts Having ” Events “

Monday

After Easter, things became even more eventful for Adeline. Little did we know just how serious these events were. During rounds that morning, the doctors discussed how they might get to the “sweet spot” with all the meds. Typically, this isn’t easy, but it isn’t hard either. No matter what they were doing, nothing worked.

They really wanted to focus on getting Adeline’s fluids down as she was still overloaded with fluids from her surgery. Reducing the fluids would involve lots of diuretics. With diuretics, they must be careful since they can hit the kidneys hard. Sometimes there isn’t fluid to “give,” but usually, the lab test they do can indicate whether that is the case or not.

Adeline & her octopus. He helped her through her events <3

As the day went on, Adeline continued to dwindle. The doctors were not sure if her sedation was not quite right or if there was something more. At times, the nurse would start doing Adeline’s daily care, and Adeline would have an event where her saturations and heart rate would drop to concerning levels. After this happened a few times, the doctors started talking about how they could approach Adeline with a better plan.

Hearing this was great news! One step closer to Adeline getting breathing tube out (can you tell where our concern was?!) and talking her home! We felt good about things, so Jeremy decided to bring the girls home, and he would come back the next day.

Tuesday

That morning when I got back to the hospital, the room was quiet. Adeline had a rough night, as she had about ten events overnight where her saturations and heart rate drop. The doctors were getting very concerned since this is not part of the normal process. They had decided to start nitrous oxide overnight to see if it would help with these episodes. Doctors wanted to do a CT scan, but it appeared with all these events, Adeline was in no condition to go anywhere.

They decided to wait on the CT scan, and they settled for an Ultrasound instead.

Adeline kept having events and we were getting so worried about her!

The Ultrasound had shown nothing, and the doctors were puzzled as to what was going on. Pulmonary Banding Surgery is a complicated procedure, but this just was making matters worse.

The night had been so eventful, they had done all those things before 8:30 am!

That morning during rounds, the doctors were a little bit at a loss of what to do next. The obvious next step to them was to start doing some checking for illnesses. It was the only thing they had left to do since Adeline wasn’t responding to any other treatments and tests. They took cultures from Adeline’s breathing tube as well as her blood. Now we had to wait at least 24 hours to see if or what would come back. It was like watching water boil.

I cried that day in Adeline’s room because I felt so helpless. Adeline had been a “normal” baby when we brought her in, and now our whole world was falling apart. The day before, we talked about getting a plan together so we could get the breathing tube out and Adeline home. Now, she was getting sicker by the minute. My baby didn’t look healthy, she looked sick. Very sick. As a mom, you want to fix everything, and in this situation, it was entirely out of my hands. I honestly hardly knew my baby yet; I didn’t know what she was trying to tell me. It was hard not to feel guilty for something I had no control over. I let her come here to have surgery, and now look. It was in God’s hands.

~Jessi

To read about our journey, you can start here.

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