Part 1- Reflections 

I thought she was going to die. I had a conversation with mom my in a dimly lit Ronald McDonald room about how sick she really was and that was the first time I had spoken my fears aloud. Later- after she was intubated- but still getting sicker I picked up the first Laura Ingalls Wilder book- Little House in the Big Woods and started crying- hoping I could read it all to her before she died. I started reading it aloud to her that afternoon. 

We knew she was sick, she had been inpatient with pneumonia for five days without much improvement  and then the team of doctors finally pulled the trigger to have a chest tube put in on day six. She had a late afternoon procedure and was well enough before hand to go stroll the halls in the wagon, oxygen hooked up, and to visit the playroom.  And then she went down for her chest tube placement. I was so nervous before it- which is saying something. I don’t get nervous. I think maybe I was less nervous about her having brain surgery. I warned the surgeon, and the anesthesiologist that her platelets had been dropping and asked them to check them before starting.  The medical team she was on was fine, but they were a little to focused on pneumonia- and what pneumonia looks like in normal- non TS kids- and how pneumonia acts in these kids- and despite my mom instinct  and me repeatedly saying “Hey- I’m noticing this- or this- or this is how she typically responds- they made it very clear they didn’t want to “look for issues” (nor did I- but I thought we could at least address the issues that were presenting) 

I feel like I am in an odd place being both a pediatric nurse and Emmaus’ mom. It is a total blessing- but I also know too much. I feel kinda paranoid and crazy when it comes to her, afraid the doctors are saying things like “oh her mom is a nurse, so she's worried about everything” but honestly- my instinct hasn’t been wrong yet- so I guess I should just get over that. And it seems if it is rare, and unlikely, it probably isn’t that far off base for her. 

That night after her chest tube placement things got really bad. She had gone back up to a med-surg floor and she just got sicker and sicker. She was so white, and totally not alert. Her respiratory rate slowed, and she wasn’t even waking up when painful things were happening.  Honestly- when I think back on that evening it is a huge blur.  She was fine and we were just waiting for her to wake up from the sedation, eating a pizza- and then suddenly it was clear that she wasn’t waking up, and maybe it wasn’t because she was sleepy from sedation. Her C02 monitor was alarming non-stop, making Dan on edge. It was bad. I puked in the bathroom. I couldn’t stop assessing her. From head to toe I was going though everything I could think of over and over. I kept trying to stop thinking like a nurse to simply be her mom, but I knew things were moving to slowly- she was going downhill too quickly. Outwardly remaining calm inwardly losing my shit.  That night was rough- but the pain team doctor was amazing. Someone told me maybe she had once been a nurse? I literally thought she was an angel- that if I searched for her she might not truly exist. She does exist by the way. 

Finally we got her to the ICU. But even then, with the best physicians things kept getting worse- for days. At one point I researched low albumin in critically ill children and found a study done about how it increased the mortality rate. I stopped reading. 

Finally things started getting better. X-rays looked better, fevers reduced. And then came the med psychosis- ICU delirium. I think the fear in those long days was worse than the fear of her dying. Seeing her so scared. Terrified. So terrified it would cause her heart rate to sky rocket to over 200, for her muscles to become rigid and posture. These drugs- they are a powerful thing. And when your system reacts poorly to them it is intense. I told someone she was ‘out of her mind’ and I meant that literally. I have never seen her eyes so dark- so wild. 
Just yesterday she was scared of something and trembling. It took me back. Back to those long days and nights of fear. Of whispered pleads and prayers that her mind be protected. That she be would be calm and not feel alone. That she would not be scared or afraid.

Here we are almost a month after coming home. She is happy and basically back to normal. But for me- things are just different. I have been marked by this experience. Marked by truly fearing she might die. Marked by feeling no matter how loudly I voiced my concerns, waved my arms- they were overlooked- dismissed- I don’t know I have ever felt so powerless. Marked by knowing I gave her a med- choose a risky med for her in hopes it would giver her seizures freedom, that it would allow the words she knows to be spoken-that in turn made this sickness go from a common cold to a terrible pneumonia. There are occasionally times in life when there is a “before & after”- a true life changing event. And I feel that this was one. I am changed because of this illness we battled. And I am grateful-even though weary and war torn- we are all here together on the other side.



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