All At Sea

 

I’m all at sea. Jamie Cullum sings of being there in one of my all time favorite songs of the same name. He sings with raspy Rat-Pack soul, with longing . . .

I’m all at sea
Where no-one can bother me
Forgot my roots
If only for a day
Just me and my thoughts sailing far away
 
 

 

So much has happened in my family’s world since the beginning of the year I can barely find my feet. Since the calm, the waves have settled but I still need to disappear to regroup, to get my balance back. I have been at sea in a storm, waves crashing over the sides over and over drenching me, my family, brief reprieve only to crash again. I’m finally getting my sea legs, the ocean has calmed. But, I’m not ready to come to shore yet. Maybe I don’t trust it yet. I don’t know. I’m working on it.

In the last two months, both of my children have been sick, I have been dealing with other family issues and difficult, chronic, frustrating health issues of my own. Overwhelming challenges. I know others face worse every day; we all have our life ebbs and flows. Somehow, it seemed we were in a never-ending storm and it called upon every ounce of reserves to get us through.

Everything falls away when you have a sick child, even a short bout of strep throat or the stomach flu. But recently my younger son was hospitalized with pneumonia. Nothing else mattered. He was miserable—I have never seen either of my children that sick. My husband and I came together like the team I knew we were. When I called him at work and said “I took him to the doctor. He just sent us home but something’s not right, I think he needs to go to the hospital.” My husband just said “Do what you think is best.” And he got in the car and came home. I don’t blame my son’s doctor. He examined him and didn’t hear any signs of pneumonia. So, when I called him back and said “Either I take him to the ER for IV fluids or you get us admitted to Pediatrics over the phone,” he agreed. Our admitting physician who was so thorough, so caring, so quintessentially “small town doctor;” he was Marcus Welby meets Normal Rockwell. He connected with my son and immediately put me at ease. I do well in situations like these. I keep my cool, do what needs to be done for my kids, but I was worried and scared. After meeting with this doctor, I felt in good hands and knew we were where we needed to be.

My son was pissed and felt awful. He’s a strong willed child and he was very sick. He moaned over and over, “I want to go home.” He mixed things up a bit with “I’m hungry.” He wasn’t allowed to eat until we knew what was wrong. When two nurses took us to a treatment room to put in the IV I said “Oh, we’re going to need another person.” They looked at each other, then at me. Three grown women against one forty pound kid. “Trust me,” I said. “We need another person.” Another nurse came in and between the four of us, we tamed the beast but not before he screamed “Stop it!” over and over again. He growled at them, his face turned blood red, he kicked and spit. I am not making this up. All along I had been saying things like, “You’re a Jedi warrior, you’re Obi Wan Kenobi, you can do this. Use the force.” The second the IV was in, he was fine and then went to the “Prize Closet” to select his prize. Lo and behold there was a STAR WARS Sand Trooper figurine. Now that’s a prize.

What happened the following day, however, soured an already sour experience beyond belief. The second morning, a different doctor was the attending. To say he lacked bedside manner is generous. He was arrogant and disrespectful. At first, this was subtle, mostly because I was so exhausted and relieved to see minor improvement in my son’s condition. This doctor immediately announced “You’re going home tomorrow.” The admitting physician had said my son needed four days of IV antibiotics. This was cheating him of two full days. He was in and out of our room in five minutes. As the day progressed, I did see continued improvement but my gut said we were not ready to go home. I thought through every concern I had. I vowed that when he came by for rounds the next morning I would talk them through with him, I assumed I would be heard, our needs would be met.

The next morning, he came in and without examining my son said “OK, let’s get you discharged.” “Wait a minute, I have some concerns,” I said. I swear he rolled his eyes. At this point my son announced “I need to go pee!” He was hooked up to his IV so I went to help him out of bed and then the doctor simply unplugged his machine. Trust me, even if it’s not life support that will freak you out. He just ripped the plug out of the wall; the machine that had brought my boy back from moaning in pain to almost smiling again. Then he said “I’ll just come back.” And he walked out.

I sat and stewed for forty-five minutes.  I had never been treated this way by a doctor before and, unfortunately, I have had my share of hospitalizations. When he returned I had to practically force him to talk with me. I tried to explain my concerns, reconcile the dramatic change in treatment plan, somehow get some reassurance that I was being heard, that my son had been given the appropriate level of care. Instead, I got arrogance. He actually smirked at me. “Do not smirk at me,” I said. His response was “You’re being unreasonable. I’m the attending today and I’m in charge. Feel free to go to Children’s next time but your son is going home.”

Before I left the hospital, I demanded copies of every single piece of paper generated during our stay, every XRAY, every chart note. Everything. The nurse said “Oh, you can call patient records when you get home and get those.” “No,” I said. “I’m not leaving today without copies of everything.” She was silent. A friendly, helpful clerk in patient records not only printed them for me, he brought them to our room. I reviewed the notes and made corrections where I found errors, made notes where I found inconsistencies in what I was told would be the treatment plan and in what actually happened. I let it be known that I found this treatment wholly unacceptable, especially in a Pediatric attending. I no longer wished to stay because I no longer trusted my son would be cared for appropriately. I have since sent a letter to the Medical Director there and to his credit the matter is being handled appropriately. This doctor has been severely reprimanded and systems are being put in to place to ensure this never happens again. But for us, it did happen. There’s no way to undo that. It’s not like when you get bad service at a restaurant and they comp your meal.

Being sick is awful. Having a sick child is worse. And our family is lucky. In my eight years as a mother this is the first and I hope will be the only time something like this happens. So now that my little boy is back to his Jedi warrior self, my older son is doing his usual thing—reading constantly, loving school, making me smile—and my husband and I are getting ready to celebrate our twelfth wedding anniversary, I find myself still at sea. I know I will come ashore soon; I just need to give myself the space and time to do so. And that is so hard. The sun shines and friends reach out and I appreciate all of it. But, I am still at sea.

Like a warm drink it seeps into my soul
Please just leave me right here on my own
Later on you could spend some time with me
If you want to
All at sea

Now I need you more than ever, I need you more than ever, now

Comments

  1. polly Kanevsky says:

    We say the same thing to Benjamin, these days when he’s trying to put on his pants without help. (“You’re a Jedi warrior, you’re Obi Wan Kenobi, you can do this. Use the force.”) It’s amazingly effective!

    WHAT an ordeal! Thanks for sharing the experience beyond the facts. And so glad Lucas is home. Love to my boys

    xo auntie p

    Like

  2. heartwriter says:

    Thanks for opening your heart on the blank page for all of us …to learn, to grow.

    Like

  3. Jenny,
    I have been somewhat out of the loop and had no idea all if this was going on. What a NIGHTMARE. And I know that these very tense and emotional and angry times take their toll on us physically as well as every other level. I applaud you for what you did and I am amazed and admiring that you got a result from your efforts. I have been in similar circumstances–not with my son, but as a social worker, and never felt that issues were corrected buy the medical personnel. One of the reasons I left social work. The impact that you effectively made
    is impressive and you should feel so good inside yourself for being a warrior in this situation.

    Thank you for sharing this story…and I hope you are taking really good care of yourself to recover from it all.

    Like

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