On the other side of the PICU wall…

The night of Haley’s VNS surgery we got a handy 24 hour stay in the PICU. It was precautionary as she has a notoriously difficult time waking from anesthesia and has limited options for rescue protocol.The PICU holds some awful memories for me and I was both sad and relieved to see familiar faces in the doctors and nurses in the floor. We were thankfully not in the same room where I watched my baby girl slumber for weeks in a coma I wasn’t sure she would awaken from.

No. This time we were in the side by the bathroom. Fist pump. (The PICU rooms don’t have individual bathrooms).
Haley recovered well from both the anesthesia and post op pain. Seizures were no worse than theyhad recently been averaging and we settled in for a long night of sleeping and seizing.

Haley in the PICU but doing well after VNS surgery
Haley in the PICU but doing well after VNS surgery

And then late into the night, I heard the commotion. Alarms ringing and pinging and voices shouting. Shouts to page respiratory. Shouts of codes being called out. Orders barked. But what really resonates in my mind was the sound of a Mom echoing through the wall. The long keening Noooooooooo followed by many more no”s strung together. The sobbing and crying so hard and loud that she was retching.

My heart broke
My heart broke

I lie there next to my child whom I was reasonably certain would be discharged the next day and I wept. For a little boy lost and a Mom whose grief I could feel though I cannot fathom the depth of what she was feeling.
I wanted to go to her. I wish sometimes that I had been brave enough to leave the cocoon of that bed with my living, breathing child and go to her. But I heard her cries echo down the hallway as someone escorted her out.

And when our nurse came in with her face flushed and tear stained to do vitals even though we didn’t need them, I kept silent. Knowing somehow that the routine and the reassurance were what she needed in that moment. Our eyes met and I wanted to ask- did he make it- even though I knew the answer. I desperately wanted her to tell me a miracle happened. But I couldn’t push the words out. I didn’t want to hear the truth. And she laid her hand on Haley’s forehead as tenderly as I would. She left with a wave and we settled back in, me wrapping both arms around McSeizy and burrowing my face into her. Grateful and guilty at the same time. And the thought reverberating in my head was “I heard a little boy die tonight”. I felt helpless and hyperaware of the fragility of life though I see reminders of that daily in my own warrior. Contemplating too that I could have been somewhere else that night, blissfully unaware of the anguish inside those walls. A reminder that we are all living parallel lives and so many never intersect.

Tonight we are home. It has been nearly a month since that night but I can’t forget the boy whose head was just on the other side of the wall or the Mom who must be still so grief stricken. And I wish I could tell her that I’ll never forget them. Either of them. They haunt me when I lie next to my baby girl and watch her chest rise and fall. And I am extra grateful for each breath that she takes knowing how hard he fought for his last.

I didn’t know that grieving a child would make you sob until you retch. I didn’t want to know. I hope I never feel that pain.And I know that it haunts me because I can imagine all too easily myself in her shoes. Because I have had moments that I thought might define me in that way- as a mother who has lost a child. Every time I see the stiffened limbs and blue lips, every time I hear her gasp for air that she can’t get enough of. Every time I panic. I fear that every seizure is THE seizure that will claim my baby girl. And it takes everything in me to not get bogged down by that, to push through it and live this life we have been granted.
I hope somewhere a Mom who is grieving her little boy knows that I grieve him too even though I was just on the other side of the wall.

8 thoughts on “On the other side of the PICU wall…”

  1. I have been here. On the other side of the wall. And I have wept and grieved with that mother. If I see a parent struggling in the hospital, although My sin may have problems I’m struggling with, I offer hugs, a listening ear, and prayers. Sometimes, parents need someone to just ‘hear them out.’ My son was in the NICU for 3 1/2 months- most of the time he was roommates with a little girl, who I think of EVERY time I think of the NICU. She had dandy walker’s syndrome. She passed away a day after we discharged from a surgery from NEC. Her mother called and I cried and cried. I felt her hurt and felt that my heart was ripping out as well. I was present and heard my mother-in-law when the coroner called and told her that her 23 year old son had died. The wailing is something that NEVER leaves your heart or memory. It’s been 15 years and I remember it like yesterday. I’ve lost two children through miscarriages and chose to grieve privately. The good thing was that through ALL these trials, The Lord was near to His beloved. He comforted me and gave me the blessed hope of seeing my children in heaven one day. He was shown through the love of others in bringing food and companionship. I have a son that has frequent uncontrolled seizures as well, and I can remember the first time he went into status (over 6 hours of constant seizing)- and thinking, ” this is it- I might lose him! Into Your hands I commend His Spirit- he was never fully mine to begin with. Let Your will be done.” I fight with all my being to keep my Momo here on earth and healthy, and VNS surgery is being considered when he gets old enough. I’m very curious if your daughter was positively affected. I’ll continue reading your posts. Thanks for sharing your heart.

    Liked by 1 person

    1. Tanya- thank you for sharing.
      This far we are not having much success with VNS- you can read my post titled No Silver Bullets which chronicles our experience so far. We haven’t given up hope though. We are still increasing the settings and they tell us it often gets more effective with time. We just don’t have that kind of time to wait.

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  2. Beautiful essay — your heart is wide. Twenty years in to caring for a child with epilepsy, I marvel at my acceptance/resignation about, even, death. What it truly means to “live in the moment” has been imposed upon many of us, hasn’t it? I remember like it was another life the days when my daughter was a baby, when I retched and vomited from stress over what the future might bring. And now the future is here, and I take it one day at a time in all its glory and despair.

    Liked by 1 person

    1. God yes. Exactly. We live in every moment, good and bad, with the grateful appreciation that it’s not worse. Because we know it could be worse. When it’s good, we live and love. When it’s bad we live and love harder.

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  3. Thank you so much for sharing this. My son has had the VNS and it has changed his life for the better. I hope it does the same for your angel. When the battery died on the VNS after 7 years and we were jumping thru the hoops necessary to get the VNS replaced, we realized just how helpful the VNS had been because we had two and a half months of concstant tonic clonic seizures once again. I’m hoping you have great success with it. You’ve inspired me to remember to not take a single day for granted. I agree that we do need to live and love just a little harder!

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  4. I’ve been that mum on the other side of the wall. My girl died in my arms in PICU. The curtains were around us and it never crossed my mind whether anyone else was there. Even tho you describe the grief you imagine I hope and prey you never experience it. I Wudnt wish it on my worst enemy. Thanks for eloquently sharing your experience. I don’t think I will forget you now.

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  5. I was that mom nearly nine weeks ago in PICU! A feeling you will never forget leaving the hospital without your child,after ten years of battling a terrible disease!!!!!! RIP sweet boy Connor mommy and daddy will see you again one day in heaven.

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  6. I was that Mom three months ago (in a Special Care Unit). Worst day of my life. Lost my son to respiratory infection due to Mitochondrial disease. (suffered years of uncontrolled seizures and many other problems) Pray your child is doing well.

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