I’ve been afraid of all the wrong things

Grace is in the ICU in critical condition with aspiration pneumonia. And I did NOT see this coming.

All this time, I’ve been afraid of the wrong things. I’ve been afraid of the seizures. Bracing myself for her next bone break. X-raying her spine every 6 months. Testing her for heart conditions she does not have. And I thought I had this respiratory thing under control because we got her feeding tube as soon as it as apparent that she was aspirating her food. I checked aspiration pneumonia off the list of things to be afraid of.

And then last Monday happened.

Grace got the RSV virus. A common cold. Would give you a runny nose. But for babies or immunodeficient people, it’s more serious. So she had a wet cough. And we expected that at some point (as usually happens) she would choke and gag on her phlegm, have a great big but super productive puke session (which we would catch in a towel) and be clear of all her congestion.

And she did choke and gag on her phlegm BUT it happened in bed while she was laying on her back (before we knew how sick she really was) and she aspirated that vomit into her lungs and instantly was in severe respiratory distress. She was passing out, couldn’t breathe, eyes rolling around. We bypassed the ambulance because they take too long. Although it’s not the closest hospital, we rushed her to Nemours. She quickly went from oxygen to BiPaP to intubation and she’s been this way for 7 days. Her diagnoses are RSV, aspiration pneumonia and ARDS (acute respiratory distress syndrome). Add to that the ICU myopathy which happens when you have long admissions in the ICU undergoing multiple procedures with many different medications, sedations, periods of paralyzation.

The outlook is hard to process. There were definitely days last week where we had to face low survival rates (her level of ARDS one particular day put her at 50%) and we’re not even talking about extubation yet (removing the breathing tube). Sometimes this stuff leads to tracheostomy. When she’s done here, she will likely go to a rehab unit. She will definitely not be home for Christmas. And we will be adding quite a few new pieces of machinery to our lives. All of this happening just weeks before our new health insurance kicks in. I’m stressed TO. THE. MAX.

But back to that fear. And being afraid of all the wrong things. When Rett girls die, I go on a hunt to figure out why. To check the boxes that read “things you should be afraid of”. People rarely say “this is why my daughter died” and so I dig through photos, blog posts, social media…anything they had put out about their daughter. Did she have a bone break leading to a blood infection? Did she have one massive, gripping, seizure? A spine surgery gone wrong? Long QT syndrome? The pneumonia ones didn’t scare me. She never had a chest infection again after getting her feeding tube. I was in control of that one. Except that I wasn’t. And you know what? Lower respiratory infections are the leading cause of death in Rett syndrome. And I didn’t know that until now.

So now I have all the questions. Should we let her go to school anymore? Should we shield her from germs, from crowded places, from ourselves? However, I have this nagging suspicion that whatever I do, I will never be in control of this.