Infection 3.0

My entire life I have heard of the phenomenon called a "Mother's Intuition". A sixth sense that a mother has with her child that she is able to know when something is wrong or amiss. My mom's intuition was hypersensitive. I don't know how many times she came to our aid because she just had "a feeling" that something was wrong. I was always entranced by her ability to seemingly see the unknown. It also made me wonder, if I was ever able to have children of my own, would I ever experience this sixth sense.

For about a week now, I've been feeling like Dalley's behavior was just a little off. She was seeming more lethargic and unresponsive when we would bug her during her cares. In addition, her heart rate was elevated. An elevated heart rate is always the first indicator she gives us when she doesn't feel well.

I voiced my concerns last week and some blood work was ran 3 days in a row. All of the results came back within normal parameters. They refused to take any additional blood for more tests in the following days because they didn't want to take blood unnecessarily from her. I tried to take the lab results for face value and just hoped that I was wrong.

The week progressed and she did so well that she was even extubated for those 20 hours. I started to think that maybe I was wrong after all!?

After she was re-intubated, she was put back on the conventional ventilator. By Tuesday of this week, she had started to need additional support on the ventilator. Her heart rate had continued to rise but instead of going back down to her comfortable range of 150-160 bpm, it was hanging out in the 180-190 bpm range. I was stressed. I just felt this continuous nag that something was wrong. I kept asking them to check, but I got the same answer from all of the neonatologist and nurse practitioners. Until they saw a drop in her clinical exam, there was no reason to check her blood again for the markers that would indicate she was sick again.

Tuesday night she was unable to remain on the conventional ventilator. After getting an x-ray of her lungs, it indicated that there were a few lobes in her lungs that had become collapsed again and any additional pressure from a conventional ventilator would do more damage. So they brought in the jet (oscillator) ventilator.

I was sitting in my chair as they wheeled in the giant ventilator. I felt so dishearted. It felt like we were moving backwards! We had made such progress and now we were going back to the very first ventilator she had ever been on. I was reassured that moving her back to the jet ventilator would not only help with the ventilation requirements that she was unable to maintain but should also take care of her elevated heart rate. They thought the elevated heart rate was because she was stressed trying to breath.

Respiratory therapists preparing to move her back to the jet ventilator. This was moments before the potential catastrophe happened. 

They started to hook her up to the jet ventilator and when everything was running okay, they shut down the conventional ventilator. Everything seemed to be going okay for a few minutes but then all of the respiratory therapists began to scramble. I heard one call out to the others, "I need some help!" as they started pulling cords and hoses. Alarms were sounding on all of her monitors and I saw that her heart rate had plummeted from the 190's down to 45. Her oxygen saturation also dropped from 90% to 40%.

I tried to calm my racing heart. I stood up and started to pace. I asked, "Is she okay?" but they were too busy "bagging her" to get her to breath that nobody answered. I hate those moments. I feel completely powerless. There is literally nothing that I could do. They got her switched back over to the conventional ventilator and went to work trying to figure out what had gone wrong with the jet ventilator. I finally ran out of the room. Every inch of my body was shaking and I could not tell if it was from the sobs that came uncontrollably or the shock I was probably in.

Within about 30 minutes the problem was found and was switched over to the jet ventilator and had leveled out within an hour or two. Everything......except her heart rate and her lethargy. By this point on Tuesday night, she was almost completely pale and she barely moved or blinked an eye when we were bugging her. It was killing me to look at her. I just felt as though there were something wrong. More than just her needing additional ventilation support.

I left for the night around 2 in the morning. At 8 AM on Wednesday, I had gotten a call from the nurse practitioner that was on the day before. Because her heart rate had remained elevated after the ventilator switch, they had decided to do blood work again. The results came back and showed she had another infection. I cried with frustration when I arrived at the hospital. I was apologized to for being disregarded.

They had already gone to work to do a complete septic work up. They took blood, urine, trachea aspirate and even performed a "lumbar puncture" to see if the infection had made it's way to her cerebral spinal fluid. Because she had probably had something brewing for quite some time, they didn't want to miss finding it.

She has been on antibiotics since Wednesday and she already seems like a different baby. She had another blood transfusion on Wednesday night so she has adequate blood supply. The antibiotics are also working because her labs had been improving dramatically each day.

Today she was even taken back off the jet ventilator and put back on the traditional ventilator.

I felt such frustration that I felt like I wasn't being listened to. One of my favorite nurse practitioners, Mindy, came to talk to me yesterday. She said "there is a positive side to this. Dalley has probably been fighting this infection for quite some time now, but she was able to stave away the signs that she was sick." Meaning... she was so good at fighting the infection herself, that she had everyone convinced she wasn't actually sick. Everyone, except my primary nurses and ..... her mom!

The results are in and it looks like the infection has been isolated to her urinary tract (UTI). She is on a 7 day antibiotic course and will get a PICC line tomorrow to finish out her treatment. She is full of spunk again and let us know that she did not appreciate not getting fed for nearly 2 days while she was fighting this infection. I hate when she gets sad, but I also love it. It's much more painful to see her when she is so sick that she is completely devoid of any fight.

This girl continues to amaze me.

"Smokin' in the boys room." 

"Rock on my fellow warriors. Rock on!" - Dalley