Breathing tube drama

I was worried that my last post was a bit premature to be celebrating her extubation and sure enough, the next morning (hours after I wrote my entry on this site) the resident doctor called me with bad news about Norah’s breathing. At 6:30am I got the call that her breathing had worsened and she had become inconsolable overnight and would most likely have to be re-intubated. My heart sunk to the floor and I immediately welled up with tears. Simultaneously, I got dressed as fast as I possibly could and literally ran back to the hospital – arriving at 6:47am. I climbed into bed next to her and cried as I pleaded with her to just cough so that she could keep breathing on the high flow oxygen we had switched her to not 24 hours earlier. I prayed, cried and begged but within minutes of my arrival, the attending doctor came in, saw her, heard her, and said, “This child needs to be re-intubated. There is no doubt. Let’s get the supplies NOW.” I felt so, so, so defeated! She had been doing so well all day and then something seemed to have happened during the early morning hours and suddenly she sounded awful, struggling with each breath. It killed me and made me feel incredibly selfish and guilty that I had chosen to go home that night and that was when the problems started.

Even now I can’t help but wonder if she would have been able to settle, would have been able to continue breathing comfortably and easily on the nasal cannula high flow oxygen had I been there to comfort her and cheer her on when she started to get upset. I know I can’t go back in time, but such a huge part of me felt responsible for her need to be re-intubated and to put her trachea and vocal cords at risk again. Anyway, to say the least, I have been staying in the hospital at night now for about a week. If it is in my power, she will not wake to only medical staff at night searching the room for her mommy or daddy and being afraid of what someone might do to her rather than awaiting a kiss on her forehead. I can’t let that happen again. She’s been through too much, come too far, fought too hard not to know that we are there for her 100%.

I digress…

So after being re-intubated on that Monday morning, the doctors became determined to prevent this event from reoccurring since both incidents had involved the left lung collapsing. I cannot even count how many x-rays she had to get. She also got several ultrasounds with and without doppler imaging, a bronchoscopy, and a CT scan over the next several days. At one point they were concerned that during surgery her diaphragm had become paralyzed as images did not show spontaneous movement and that it’s location in her abdomen was so high that it was in-fact putting pressure on her left lung. There was talk of a diaphragm plication surgery and everything. Thankfully, upon her surgeon’s request, a repeat ultrasound revealed that the diaphragm was, indeed moving. Thank God!

So on Saturday, Oct 10, after many breathing treatments, tests and many “sprints” on the ventilator, Norah was finally extubated a 3rd time. They put her on a nasal IMV so that her breathing was still being regulated by the ventilator for a day and a half, then she was switched to high flow nasal cannula on 10 liters of oxygen and slowly weaned down. In an almost ceremonious fashion, on Wednesday morning, I watched with glee as the nurse literally cut the oxygen line away from Norah’s face and allowed her to breathe completely on her own.

She remains on “room air” and is still getting breathing treatments as well as chest and back PT (basically using a rubber plunger looking device to break up any secretions in her lungs by applying moderate frequent pressure to her chest and back several times a day… aka “pounding” on her to ensure she will not develop a mucous plug). We are so incredibly proud of her despite her 2 “failed” extubations. She just had to be ready for the right time to come off of the support of machines on her own!!

THE PROGRESSION