Home Away from Home

I hardly know where to start with this post. So I’ll just start. I’ll try to be coherent through the stress, anxiety, and exhaustion. The girls all got colds this past week. Oriana started it, and like always, she had a runny nose for a day or two and was pretty much over it. Violet always seems to get hit harder and longer. Of course, we were just waiting for Addison to inevitably come down with it. It hit her Saturday morning; she woke up with a super snotty nose and started spitting up lots of secretions. We attempted a tube feed, but she vomited it up pretty much immediately. I did manage to get her medications in her (which is really the most important thing). Other than the coughing and vomiting/spitting, she wasn’t doing terribly. Her breathing was fairly easy. We kept a close eye on her. Around 4 pm, she took a turn for the worse. She was really starting to struggle to breathe. I had packed our bags for the hospital that morning, so I threw everything in the car and Addison and I drove to Akron as fast as we could.


In the ER, her oxygen sats were low, so they tried her on a couple liters of oxygen, but she was still working too hard to breathe and her sats would not stay up. So Addison got put back on her trusty old friend the vapotherm. Her breathing kept getting progressively worse, she was really struggling and they had to keep increasing the flow on her vapotherm. By the time we got up to the PICU at about 9 pm, she was on a vapotherm of 20 liters and 100% oxygen. To attempt to avoid intubation, they tried her on bipap, but it did not help. She earned herself the ventilator. She was totally exhausted at that point, but she was still fighting them even though they sedated her for the bipap trial.


It was a very long night. She was on 100% oxygen for quite a while and it took a long time to find the vent settings that she liked. The doctor didn’t leave her bedside for a solid two and a half hours, and the nurse practitioner was with her even longer. It seemed like no matter what they did with the vent, she just wasn’t oxygenating well. They started her on inhaled nitric oxide to help dilate the blood vessels in her lungs and improve her oxygen level. It did help and she’s still on it. They finally found some ventilator settings she liked. It took a long time and multiple tries, but they were finally able to place a triple lumen catheter in her groin and an arterial line in her wrist. Her chest x-ray looked like she has a viral infection, and her swab just came back positive for rhinovirus and enterovirus. Her perfusion and urine output have been poor off and on, so she’s gotten several fluid boluses and she’s very swollen. As of this morning, she is finally down to 45% oxygen. She has made some improvements, but she still has a long way to go.


I cannot even begin to process everything that has happened. I have not seen her this sick since she was in the NICU. I have never seen her breathe like she was before they intubated her. I’m not sure in all my years of nursing I have ever seen anyone breathe like she was last night. It was horrible. I figured we were in for our usual couple days in the PICU on vapotherm, a day or two on the regular floor for monitoring and restarting feeds and then home. Needless to say, I was completely stunned by how incredibly sick she got so incredibly fast. She was fine and then she wasn’t; and it just kept getting worse. She’s at least resting comfortably now, not that she has a choice, with the fentanyl and versed drips, but she was so uncomfortable for so long, she needed a break. This gloomy weather sure seems appropriate for how we are feeling.


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Mommy to 4 little girls & 2 fur babies. Just trying to survive the crazy. Sometimes I laugh, sometimes I cry, sometimes I need to scream.

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