And the award for our second longest hospital stay so far…

On Thursday, May 30, during rounds, the attending decided to go ahead with a PICC line for Emmett. (A PICC line is basically a long IV that goes into a large vein, versus a normal IV that just goes into a peripheral vein. In Emmett’s case, the two PICC lines they’ve placed have gone into his upper, inside arm, then threaded into the superior vena cava, a large vein that goes to the heart.)

By this time, we’d already been in the hospital for a week and a half, initially for respiratory distress and fever. (We took Emmett to the ER on May 20 and was transferred to the Santa Monica facility because they were out of beds in Westwood. The next day, he was transferred to the PICU back in Westwood because of the amount of oxygen he was requiring.) He had started to improve but then started to show some signs of backtracking, like needing a little more oxygen than he had previously. His peripheral IV had blown a couple days prior, but since he was back on his usual feeds (via his g-tube), we wanted to try avoiding another IV prick if we could help it. But because he had begun needing more oxygen, the doctor wanted to make sure we had access if needed, and at this point, it was prudent to do a central line which could handle much more versus just a peripheral IV.

They kicked me out to do the PICC line (the room needs to be sterile for the procedure), then let me back in once they were done. It was a little after 11 a.m. Just past noon, they noticed that his heart rate and blood pressure were unusually low. I can’t remember the exact numbers, but I think his blood pressure was in the 40/20 range, his heart rate in the ~40-50 range. The nurse called the fellow, who called the attending doctor. Even with the noise and people coming in and out, he stayed motionless. Then his saturation (oxygenation) levels started to fall. One by one, his room filled with people. I stood to the side as people came in and out, bringing epi, a cart filled with supplies and other things that are just a blur to me now. They brought out the ambu bag, then as they lowered the top of his bed down, told me he had to go on a ventilator because he wasn’t protecting his airway. He was limp while this all happened.

I guess I looked terrified because a couple of the nurses we’ve gotten to know stopped to rub my shoulder and ask if I was okay. Was I okay? Will I be okay? No, probably not. It’s terrifying to see your child intubated. It’s terrifying to know this is potentially around every corner because of the disorder Emmett has. The fact that he can’t protect his airway, the fact that he can’t move around well which makes it easy for him to get a serious infection… Whenever he gets so sick, I feel this kind of desperation and despair that comes in waves throughout the day. Quick to anger, quick to cry – I feel like I have a raw nerve exposed and everything that happens is like someone just poking at it. Maybe it’s PTSD… I know a lot of special needs parents end up developing that because of all the trauma.

Shortly after he got intubated, Steve arrived at the hospital. I’d been keeping him updated on everything that was happening. We got shipped off to the waiting room because they had to put in a femoral line for additional medications, and they typically don’t like parents hanging around for that type of thing. Then the attending doctor sat down with us to make sure we understood the gravity of the situation. “He’s very sick. It was very touch and go. He could’ve died. If we hadn’t had the PICC line in, he very well might’ve died.” Those weren’t his exact words, but that’s basically what he was trying to tell us. The best guess for what caused all of this was that he got a new bloodstream infection on top of his respiratory illness. They were never able to identify anything through testing, but it’s possible that the antibiotics they gave him right away impacted the tests.

We’re 22 days into his hospitalization now. Three weeks of beeping machines, watching his stats like a hawk, rearranging our lives so Steve or I could be at the hospital most of the time. Trying to juggle that, a 4 (now 5) month old and did I mention moving? It’s all been A LOT to deal with.

Emmett was extubated a couple days ago after being intubated for 10 days. They wanted to extubate a week in, but several things popped up that prevented that. He started having what they thought were seizures – lasting from 4-30 minutes – and kept giving him a sedative that made him so sleepy he couldn’t breathe well. He got a collapsed lung and mucus plug from – we think – getting that emergency sedative (Ativan) 4 times in a 24-hour period, and being put on a pressure support trial for 5 hours, longer than the two hour trials they normally do. Anyway, all of that made them hesitant to extubate, which is why he stayed intubated for so long.

In the next few days, if all goes well, he’ll go from bipap to cpap to high flow oxygen to regular nasal cannulas (or some mixture of that, depending on what the doctors decide). Emmett still seems super uncomfortable but I imagine it’s a lot better than having a tube down your throat. And hopefully, when we’re finally able to get him home and into his new room, this will be but a nightmare in the rear view.

p.s. Sorry for the rambling. I’m hoping to put together something more coherent in the future on how he’s doing, but was hoping maybe writing about this experience will help me process some of it.