A few months after Liam was discharged home from the NICU the hospital he was born (and spent his first 153 days) in opened a beautiful, brand new, state-of-the-art, 80 bed, private room NICU facility that has played host to numerous national neonatology conferences in the almost three years since opening. It’s pretty awesome and in all the time that it has been open and treating patients I haven’t ever been up there. I suppose by itself that isn’t all that remarkable until I remind you all that I work there. I have worked in that hospital since long before Liam was even a twinkle in my eye. Worse yet, as a department manager I do have job responsibilities that require me to go into the NICU. Responsibilities that I have spent three years avoiding by asking co-workers and other staff members to help me out and take my place.
It’s not that I’ve NEVER been in the unit. It’s just that the one time that I did walk through, about a week before it was ready to take on patients and they were in full training mode, I quickly realized that I couldn’t do it. I couldn’t handle it.
I literally couldn’t stomach it.
While training staff and writing and implementing the policies and procedures of the brand new hospital unit each room was occupied by expensive mannequin babies hooked up to the normal patient monitors and set to alarm randomly with random symptoms to play out any and all possible scenarios. And so although there weren’t any actual patients or their families the unit was “functioning” as if we were in the midst of a baby boom. The lights, the smells, and the damn sounds of a NICU were everywhere. It was the damn monitors, the sounds, that got me.
There I was, only a few steps from the elevator and about to walk down the hall toward the conference room when I heard it. The private rooms of this beautiful new NICU kept the hall fairly quiet as opposed to the bay style setup we were used to when Liam was a patient they are not silent by any means, so when I passed that third doorway and heard the alarm of a de-sat ringing out of a monitor above a creepy plastic doll in an isolette I thought I was going to throw up right there in the hall.
It wasn’t the sight of other NICU babies or families that made me nauseous since there weren’t any to be seen. It was the sound. It was that awful, awful beep and ring of oxygen saturation numbers dropping. Remember, all this happened only a few months after Liam had left the NICU and although he was at that time in the PICU of the children’s hospital down the road their monitors were different. Different tones, different rhythms. I had worked hard to suppress the memories of those sounds as a coping mechanism and with a few simple sounds 153 days of heartache, stress and worry came flooding back in an instant. An awful instant that I was completely unprepared for.
It was that moment actually that made me realize that maybe I wasn’t as “ok” with our situation as I thought I was. It was hearing that sound and the feeling of being kicked in the gut that came with it that made me realize that working and returning every day to the hospital where Liam had been a patient was hindering my ability to process what was happening. If nothing else that damn alarm told me I needed some time away from this place to get some closure and space from constantly seeing the people and places that for so long were so dangerously important to Liam’s survival.
I still haven’t gotten that closure or that space and perspective on what we went through there as evidenced by the fact that I haven’t set foot in the unit since but that’s for another blog. Because today I can’t stop thinking about those damn monitors. Any monitors.
As I said above the monitors in the PICU are different. A different tone, a different rhythm, and different symbols on the screen, they may not make me as nauseous as the NICU version but they still bring on an anxiousness and anger in me.
On Tuesday Liam was admitted to the hospital for his bi-annual bronchoscopy and ventilator assessment. He spent Tuesday night in the PICU to get a blood gas at night to decide whether to adjust any of his vent settings. We entered the hospital with a very healthy and content little boy. THis was a planned and scheduled hospital stay that we had months to prepare for, as well as being, by my own quick calculations Liam’s 195th (give or take) night staying in the PICU.
Why then did I spend every minute of the visit staring at this damn monitor and worrying about any subtle little change or blip that happened there on that screen?
Worrying that something was going to keep us there longer than the 24 hours we were told to expect. We know better than to believe what we are told. Our last “24 hour” vent assessment lasted 4 days I’d be damned if I was going to let that happen again.
Except that the only thing I could do at the time, the only thing I can ever really “do” when Liam is in the hospital is to watch that monitor and worry. Worry and wait. Wait for the resident to come in and start asking questions. We would be in and out in under 30 hours come hell or high water and I was ready to barricade the door barring entry from any doctor without direct and personal knowledge of Liam’s condition and past medical history.
I wasn’t going to allow in any “heroes”
You know the type – They’re the really gung-ho interns and residents in a teaching hospital. They usually come out late at night after the attending has gone home and they are left to mind the store unless a major trauma comes in. They know better than the parents do because hey they’ve passed their boards — they don’t need to ask questions of, or more importantly listen to, parents because as rare as it may be they read up a bit on “Miller Dieker Syndrome” before they came in to the room. – and then worst kind – they love finding symptoms for things THAT WE WEREN’T EVEN LOOKING FOR! The kind of resident that just can’t wait to impress the attending with that “look what I found!” look in their eye, just hoping and wishing that something as simple as the bad placement of a lead or oximeter probe is really an undiagnosed heart condition or worse and we better schedule some films in the morning. The kind who see patients not as children to be treated but as diagnosis, syndromes, and treatments to be checked off some sort of lifelist like a birdwatcher. Don’t get me wrong this is not a majority of interns and residents, I would have to say that MOST residents and interns have the potential to be very good doctors, but believe me the “heroes” exist, and they can be dangerous (someday I’ll tell you about the resident who couldn’t help but tell Karin and I how excited he was to be involved in a pulmonary hypertension case as we stood next to our three-day old baby not sure at the time if he would even make it another three). On an overnight observation any unnecessary test can lead to further time in the PICU waiting for results. Further time in the PICU can lead to further complications like MRSA and any other drug-resistant bug floating around an intensive care unit. So for this night? No. No for this night they weren’t allowed to see Liam.
Unless his Mom said it was ok. I had to work all week so once Karin got sick of watching me stare at Liam’s monitor I got sent home to a big, empty, quiet house to try to get some rest. I’m man enough to admit that I do not do well in this house when all by myself. It is so rare that I would be here alone and overnight alone is unsettling. I felt guilty for being here able to sit on my own couch watching TV on the monitor in my living room while Karin sat vigilantly by Liam’s bedside watching his monitor.
By the time I got to the hospital on Wednesday morning the doctors had rounded. They saw what they needed to see and we got cleared to go home as soon as the paperwork was finished. We all know that the paperwork can take hours (which it did) and you’re not really “cleared to go home” until you are in the car with the hospital growing smaller in the rearview. We have been cleared and then told we had to stay before and in fact that very thing happened to close friends of ours and their son just a few months ago so instead of relaxing and getting ready to take my family home I parked myself next to that bed and stared at his monitor for a few more hours until the paperwork was completed and we busted out of the joint before anyone could change their minds.
As I finish typing this Liam is sleeping soundly for the first night since his hospital stay four days ago. As accustomed to hospital visits as we are we’ve had a rough time getting back into our routines this time and Liam has yet to get back to his sleep schedule. As a result none of us have slept much at all this week and I’m amazed I was even able to type this post at all. I’m going to go make sure Liam is really really sleeping before trying to catch a few zzzz’s myself.
How do I check how deeply he’s sleeping?? That’s easy I just look at his heart rate.
It’s on his home monitor. (I hate that one too)