Monday, November 12, 2018

And a hug around the neck

Thursday, Ben had the procedure to remove the cyst on the side of his neck. Thank you so much for all the good vibes, prayers and virtual hugs. He sailed through just fine and was back to his usual happy self when he woke up Friday morning. I'm still recovering.

Having a child undergo any medical procedure is scary, but it can feel even more intense when you have another child who's been through serious trauma: hospital PTSD is real. For me, the hardest part of the entire ordeal was holding it together for Ben and not seeming anxious. It's been nearly sixteen years since Max was born, and I was surprised by how potent the PTSD still is.

We were at the hospital—the one where Ben was born—at 8:00 a.m, for the MRI; they needed to do a scan to pinpoint the exact location and size of the cyst. We signed the papers. Turns out a machine part was broken, and so we waited. Poor Ben hadn't eaten since the evening before, and he kept asking for snacks. Then he got upset when we had to put the hospital pj's on. I cuddled with him and sang the first song that came to mind: 

I love you
A bushel and a peck
A bushel and a peck and a hug around the neck....

And I totally choked up "neck." Because oh, his sweet little neck with the lump in it. Because I was worried about the anesthesia and the procedure and him being in pain and all of it. I rubbed my eyes so Ben couldn't see my tears and I kept singing. Finally, the anesthesiologist arrived to give Ben a sedative so he wouldn't freak out about the anesthesia mask or even remember any of it. "It's like having two glasses of wine," she said. Too bad there was no such drugs for me. (I am planning to patent Mommy & Me Valium.)

Within a few minutes, Ben was woozy and very happy. As I carried him into the MRI room he murmured, "Is my bump gone?" When I laid his head down on the table, he looked downright giddy. The doctor and I sang the ABC song to him and he was out. 

"Mom, you have to leave now," the anesthesiologist said, firmly. I forced myself to walk out of the room and I burst into tears. I didn't just see Ben lying there on the MRI table. I saw Max lying in my arms in a hospital bed the day after he was born and turning blue. I saw Max lying in an incubator in the NICU, unconscious, with tubes hooked up everywhere. I saw Max lying in a hospital bed after he'd had a grand mal seizure at age 15 months. I saw Max lying on a gurney at age 8, knocked out so he could get Botox injections to loosen up his hands. 

I didn't want to sit in the waiting room with hordes of other anxious people, so Dave and I found a couple of seats in a hallway and we settled in. Two hours later, we found out that Ben was headed into surgery. I distracted myself with Facebook and magazines and I non-distracted myself by repeatedly asking Dave what he thought was going on in the OR. A patient manager came by to say everything was going well, and when I got all teary I explained that we had an older child with disabilities who'd been through a lot when he was born. She nodded. "You never know what people have been through," she said.

The surgery took an hour and a half. A nurse told us Ben was awake but woozy and out of it. I asked if I could hold him, and she went to check. We called Max and Sabrina, who were with our sitter, to tell them Ben was OK. The nurse came back to bring me to the OR. Ben was all riled up: he was wailing and trying to stand. But he was attached to an IV and they were worried he'd rip it out, so they gave him a little more sedative. I sat on the gurney, holding him. When he woke he was again agitated, but a little less so. Finally, he calmed down. I gave him some apple juice. He nodded off.

I'd been hoping we could go home that day, but the doctor wanted Ben there overnight in case he needed pain meds. They wheeled us to a room. Ben's left hand was wrapped in gauze so he couldn't rip out the catheter and he kept trying to unravel it. I gave him the lollipop I'd promised him, and he fell asleep sucking it. Dave brought us dinner then went home. The smell of the room was getting to me—hospitals always have that distinct odor—and I tried to distract myself by thinking back to our stay there after Ben was born and how baby-like he still looked when he slept. 

Ben didn't seem to be in pain when he woke up. He touched his neck. "I have a new bump!" he said, and I told him it was going to get better soon. The doctor stopped by. He said the cyst had extended from the front of Ben's neck to the back, and that he'd injected the drugs in two different spots. He pointed to the red pin pricks. It will take eight weeks before the swelling completely goes down, and we'll see if the cyst is completely gone. The doctor said we may not know for sure until Ben has a cold. If a lump appears, part of the cyst remains and we'll need to go through another round. 

Ben ate a bunch of saltines. I gave him some healing Nerds—the boy loves his candy. He watched Paw Patrol on his iPad. A monitor started beep-beep-beeping because he'd kicked off the wire on his toe for his vitals, and when no staffer showed up I went over to the nurse's station, pointed out that it was going off and said that someone needed to be on top of that. (See: hospital PTSD.) We wandered around the ward. Ben studied the list of names of kids in the pediatric ICU to find his. He told me that the "M" in "M/F" next to each name stood for "Mommy."

We had a restless night. But in the morning, Ben woke up smiling. He ate well from the smorgasbord on the breakfast tray. We played peek-a-boo with the room-dividing curtain. And then, we were released and we took a bus to Aunt Judy's house, downed snacks and took a four-hour nap. Max and Sabrina fell over themselves giving him kisses when they came to pick him up. 

The swelling on his neck is going down every day. Ben hasn't said another word about it or the hospital. This weekend Dave and I chilled with the kids and saw Bohemian Rhapsody on Saturday night (singing that in a movie theater is pretty cathartic). I did a bunch of yard work, my go-to form of therapy. Ben was a trouper, and I'm praying he doesn't have to go through this again. For now, I am so relieved it's over.


  1. He's looking well in that photo! Glad to hear it went ok. And well done to you and Dave x

  2. Ellen….
    Roughly nine years or so after Dr. J. performed not one, but twain separate craniosynostosis reconstructive operations on my skull, and Dr. C. repaired my congenital diaphragmatic hernia, my youngest brother, Michael—who has Down syndrome—underwent an open heart surgery. As a loving Mother, you cannot help but wonder…. ‘Why do I have to go through this again? I already entrusted one of my babies to surgeons. What Life lesson didn’t I learn the first time around?’ Yes, hospital PTSD is very much real!! Just ask any Mama who has been through it multiple times!! Your thoughts, feelings and emotions are valid, Friend!!
    ‘Keep on keepin’ on like a bird that flew….’ --Bob Dylan
    PS. I am so happy that Ben is feeling better and recovering well!!

    1. Thank you, Mary Lou. Your family has been through a lot—hope everyone is doing well.

    2. Ellen....
      We are both doing well now…. Our surgeries were years ago!! Other than having asthma, I am healthy!! I’m feeling gratitude during this blessed Thanksgiving season, and I’m listening to Christmas music on the radio!! Michael is healthy, as well!! He’s my best friend, a much better person than I will ever be, and looking forward to Macy’s Thanksgiving Day Parade!!
      Peace out, Mary Lou

  3. Sp glad everything went well! I definetely have pretty bad PTSD from my own extensive hospital experiences and surgeries and recently my partner had to go in for an unexpected but routine surgery. I was a mess and it didn't help that some of the people at this hospital have mistreated us in the past and one nurse was just completely incompetent during out time in the ER and I had to report her but she had already harmed my partner. Fortunately once he was admitted everyone was great and he ended up with the best surgeon in the area for that type of surgery. Some friends were really great and supportive during this but one in particular was really agressive towards me and kept pointing out how I hadn't handled it well. People don't understand medical trauma unless they've been through it. Yes I was upset but I kept it together until one of our friends got to the hospital and I could leave for a bit and melt down in private. Then I came back and kept it together and got him home ASAP and took care of him even though it wrecked me physically. Now that he is recovered I am processing the emotional wreckage and we are getting through that. Considering everything I have gone through I consider that a victory and it sounds like you did amazing as well. It's okay to be scared and upset!

    1. I hope your partner is fine—I'm sorry you both had to deal with that. Yes, it's hard to understand medical trauma unless you or a loved one have been through it. I can totally relate to "processing the emotional wreckage!" As I sit here with a glass of wine in hand. :)

  4. Hang in there mama! Glad it went well

  5. Thanks for the update (your pictures are always spot on) - hopefully this will be one and done.

    Hospital PTSD is SO real.


Thanks for sharing!

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