Not Everyone Gets to Go Home

sam_sick

Sammy, my 7-month-old, couldn’t stop throwing up.

Violent wretching that produced green bile, complete with little brown flecks we’d later learn were feces. Every 10 minutes — almost on the dot — he would scream in horrible anguish while clutching his tiny belly and drawing his knees to his chest. His face went from cherry red to purple, and when the terrifying silent screams began it was the miniscule yet bulging veins on the side of his head that spoke volumes about his pain level.

But as scary as his screaming was, I preferred that over the lethargy.

When the wave of screams finally subsided, he would go into an even more frightening state of malaise. He just sat there, eyes rolling around in his head, looking totally confused. He couldn’t focus his eyes on anything or anyone, and was basically unresponsive. I begged him for a smile, for a scream, for ANY kind of recognition on his part — but nothing. The only thing that could break him out of his zombified state was another round of gut-wrenching abdominal pain.

The local ER. The preliminary diagnosis of a stomach virus. Sticking a little baby with a needle to put in an IV line. It was all a blur, because all I could do was focus on my helpless son and try to telepathically will him back to good health.

It didn’t work.

Phone calls. Doctor huddles. Plans to open the local pediatric ward just for Sam. Scrapping those plans because they feared whatever was happening was beyond their level of expertise. Four separate people in the ER in addition to the nurses — some of them patients themselves — took one look at Sam (whose skin had begun to turn Simpsons yellow) and wished us teary-eyed “good lucks.”

Suddenly Sam was getting an ambulance ride to Boston Children’s Hospital. MJ rode with him, which meant I had to drive myself the hour north to the city. Actually, it took 54 minutes. I timed it on my GPS. Because those 54 minutes were the only time I was allowing myself to freak the fuck out. To cry. To scream. To let the stark terror I was feeling consume me so I could play the “What If?” game with myself in an empty car instead of burdening my wife.

I thought about my son dying. About buying a tiny casket. About delivering his eulogy at a memorial service. I thought about friends who have lost children and how unimaginable that is. I spent 54 minutes allowing myself to think the unthinkable. Then I stuffed those thoughts in the trunk of my car and let the valet drive them away.

I won’t go into the specifics of Sam’s medical condition, except to say the doctors at Boston Children’s did a FANTASTIC job of diagnosing him quickly and accurately. The treatment is, unfortunately, very painful and invasive — but they were able to avoid surgery. And avoiding surgery on a 7-month-old is a huge, huge thing.

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What’s important is they found a diagnosis and the condition was treatable. Because, as I saw first-hand in Boston, that is not always the case.

The hallways of Boston Children’s are painted with bright colors and pictures of animals and majestic landscapes every few feet. But those cheery corridors belie the feeling of dread, doom, and death that looms around every corner. There were too many little kids with bald heads, too many small patients moaning in pain, and too many parents crying in corners to pretend otherwise.

Your world shrinks when your child is hospitalized with a serious condition.

Time of day ceases to matter, and it’s measured instead by time between instances of vomiting. Time until the next nurse check. Time he’s held down his food. Suddenly there’s a hyper focus on the next thing, on what’s immediately in front of you. He has to hold down that food before we can worry about the next test which will tell us if we need the ultrasound which will let us know if we can do a non-surgical procedure instead of opening him up.

Life becomes a series of short, punctuated milestones beyond which is the complete unknown. And if you don’t lock the unknown in your trunk and let the valet worry about it, you’re in for a long, long night.

In the end, Sam was fine. They figured out what was wrong, fixed it (although it took multiple tries), and he got to go home. When they told us he was good to go home, I let my emotions loose for the first time in two days. I ran to him, picked him up, danced around, and let out a full-fledged “WOOOOOOO BABY!!!!” MJ and I hugged him close and we all smiled triumphantly as we collected our belongings to return home.

That’s when we heard the pained and agonizing scream from a child down the hall. So much hurt. So much anguish. And I’m sure he/she had two parents close by, whose hearts were making the same sound of torment.

Our smiles faded as we walked solemnly down the hall toward the elevator, the screams from behind us echoing ironically off the festive yellow walls. They are screams that will sporadically play in my head until my heart no longer beats. They are a reminder that not everyone gets a triumphant elevator ride to the lobby carrying a bundle of joy.

Not everyone gets to go home.

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16 thoughts on “Not Everyone Gets to Go Home

  1. Well written and so true, Aaron. Molly was brought to the ER when was 11 weeks old and had a fever. It was, by far, the worst and most terrifying night of my life. She was clearly uncomfortable and feeling sick but they gave her an IV, took cultures, and the lumbar puncture was the worst. Even knowing it was the best decision to rule out meningitis, giving permission to pin her down and insert a needle into her spine? It killed me. Thankfully, she was fine in the long run and it never got too serious or critical, but it is an experience I wish no parent (or baby) would ever need to go through. It has been five months and I still shiver to think about that awful night. And, yes, we were among the very lucky ones. I am glad things turned out well and I’ll continue to send my best wishes for your whole family during Sam’s recovery from his visit.

  2. I had a very similar thing happen, only it was with my 36 hour old son. At 48 hours we were at Seattle Children’s Hospital and he was in surgery. We quickly got a diagnosis of Hirschsprung’s Disease (a bowel issue) and he had another major surgery at 10 days old. Every single thing you said here is spot on. I had that exact same drive following the ambulance to the hospital. It was likely one of the top 3 worst moments of my life. After 3 weeks we had the joy of finally getting to go home with our son, but there were so many kids there that would likely not, some that were sick and abandoned and so many hurting parents. I am glad that Sam is home safe and healthy with you!

  3. I don’t even know if I can type a comment through my tears. My son was there so many times. SO MANY. He still needs open heart surgery. BUT, right now we are home. We have come home every time. Sometimes it took days, sometimes weeks, but we’ve always come home. I’m so thankful you got to do the same.

  4. Fortunately for those of us who’ve had kids hospitalized, it’s a terrible time. We spent the twins’ first 6 weeks in the NICU. That was a terrible place, one I hope to never go back to. I’m incredibly glad that Sam was able to have his issues resolved, and hopefully that’s the end of it.

  5. Incredible piece of writing here!

    I also have friends who lost their baby and have family members who wait in anguish for it all to be better so they can go home. I can’t even imagine what it would be like to not be able to go home. Heart-breaking.

    So glad your child is well and you have answers to the cause.

  6. Aaron….There is so much I want to say, and none of the words are finding me right now. Wonderfully written post, and I am glad your family is home together now. My boys are 14 months old on Friday, and just when i think I can’t love them any more, another day passes and I prove myself wrong.

    I’ve really enjoyed reading your blog but this post hit home. I finished the last 3 paragraphs while taking deep breaths and trying to hold back the tears. It was a year ago that I got to bring my 2nd son home to join his brother after he spent 2 months in the NICU. I remember after they were born and they told us about his heart and lung issues. I was walking to the level 3 NICU from my wife’s room to deliver breast milk, and stopped at the chapel on my way back. I told God that if he wanted Gavin to join him in heaven that it was o.k., but to please give my wife and I the strength to deal with it. Now over a year later both of my twins are doing well, on track, hitting milestones, and showing me the piece i had been missing all those years without kids.

    So happy for you, MJ, and the boys. keep up the good writing, and stop making this Dad cry for any reason other than laughter!

  7. I’m so glad Sam is doing better and the doctors were able to figure out and fix the problem relatively quickly. Thankfully my son has been relatively healthy. We had a friend who had a son who was diagnosed with Ewing sarcoma at age 2 and they spent the next couple of years in and out of the hospital (mostly in) for treatments and other related illnesses. That boy will be 14 this month so he was one of the lucky ones who got to come home.
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  8. Yours is an experience I would not wish on anyone. I am very sorry you and your family had to go through such a nightmare, but I’m glad to hear your little guy is OK.
    Eight years ago, my then ten – month – old son was on life support at CHB due to a very scary diagnosis. It was a long time before we were able to come home, but we were among the lucky ones who eventually did. We still go for treatment at least once a week, and we have received nothing less than excellent care from every specialist we have seen there.

  9. Aaron, glad to hear everything is better with Sam. As a parent of twins who had multiple month hospital stays, I know of the whirlwind of emotions that take hold during the situation. I also know what it’s like to have to be strong and hold everything together for the sake of your family. Being in the NICU at Children’s Hospital, I was surrounded by people who were not as fortunate as I was to be able to take our babies home or to take them home with as few issues (which is crazy to me at the time considering I had one come home on oxygen).

    That’s not to say it didn’t come with its share of tough moments. All I know is I am very appreciative of the doctors, nurses and resources a hospital like that has to be able to help so many kids go home. My 15 oz and 1 lb 15 oz miracles wouldn’t be home if it wasn’t for some really great people who are surrounded day to day by life, death, happiness and sorrow. While they might not all have a happy ending, the amount of good a place like that is doing is truly amazing and something I will never take for granted.

  10. Nicely done article. We saw this first hand when our triplets were in NICU. They were all healthy, but no amount of “healthy” prepares you for a 3lb baby. And yet there was as a 1lb baby there at the same time who, as you say, didn’t get to go home.
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  11. So he had intussusception? I just recently got back from Lebohneur with my 7 year old child that had that. Where you said your child would scream in pain, mine did the same! I felt so helpless, I didnt know what to do. I had to keep holding him everytime it would start hurting and he would be in so much pain, all Icould do was be strong and try to not cry I front of him. Anyways we go back Tuesday for a check up, hopefully he can start back to P.E and recess at school!

  12. A very emotional post, I’m in tears. I’m so glad Sam recovered (and quickly).

    It would be interesting if you ever felt like writing more about the need to support your wife and ‘be strong’ for her and your son (ie. crying and yelling in the car but being composed once you reached them at the hospital). My middle son was in the NICU for a month when he was born and was very close to not coming home. My partner was ‘strong’ throughout this time whenever he was with me but I know he cried and expressed his fears to his brother. I cried and wailed all the time and that helped me, I wonder if being the ‘strong’, stoic one, helps men?

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