Beware: a very long story follows.
Due to HIPPA, no one is allowed to share medical information together with a patient's name. So the following story is true but the sweet baby has an alias. This story is one I have been thinking about for the last month and one with which I am just now coming to terms.
I had been at Children's Hospital a little over two weeks when I showed up to work one Wednesday morning and was greeting by our sweet, smiling upper-level resident, Kim. I'd had two asthma patients the day before who had both been discharged, and so was coming in with nobody on my plate. Immediately upon entering the residents' office, Kim informed me that she had a baby for me to follow. He would be the only patient I saw that day, as his case was complicated. His brief history is as follows:
Jonah was born seven days previous to his admission to the PICU. When he was four days old, his mother took him to the doctor, because she was concerned about constipation. The doctor noticed that Jonah had a low oxygen level on room air. He admitted him to the hospital in Lawton where he was started on some antibiotics.
That afternoon, Jonah's mom noticed his eyes crossing, lips puckering, and legs stiffening while his oxygen levels continued to fall. That evening, he had an episode that the mother recognized as a seizure. One and a half hours later, he had a second seizure lasting approx 3 minutes. Medflight was called to transport the baby to our hospital in OKC. Upon arrival, the paramedics found that his heart was not beating. They proceeded to intubate him and gave him chest compressions. He had another seizure en route to the hospital.
Then Kim paused and she said, "This is the part of the story that is so sad."
Kim was the resident on call the night Jonah came. Upon arrival at the PICU, Kim examined him, wrote an admission note, and was about to leave the room when Jonah's mom mentioned to Kim that she had painful, vesicular lesions on her right breast. Kim examined the lesions and realized that they were a primary outbreak of herpes.
There are only a few reasons that a person should not give birth vaginally. One of them is if the mother has a vaginal infection, because as the baby goes through the birth canal, it will mostly likely contract the infection. If it is a bacterial infection, like gonorrhea or chlamydia, it can be treated. However, if it is a viral infection, there is very little that can be done. Tiny infants also have virtually no immunologic defense against infection, and therefore, when they contract viral infections, it is very easy for the infection to get into their blood and spread to all their organs (called sepsis). It is very serious and frequently ends in death.
So that is how it came to be that Jonah contracted herpes from his mother. The mother had no idea.
Kim immediately got cultures of eye, skin, nose, trach aspirate, blood, urine, and rectum. And also of the mother's lesions. We already had a pretty strong suspicion that Jonah had sepsis due to disseminated herpes; when the cultures came back a few days later, the suspicion was confirmed. Everything was positive.
I went in to see Jonah that first day and he didn't look too bad. He weighed almost seven pounds and had little tufts of blonde hair. He did have some bruising from where they'd put IVs and lines in him- mostly around his umbilicus and thighs. With a blanket on, you could almost think he looked normal. (Apart from the tube going down his throat.)
However, when I got to his chart... wow. This baby was complex. Most of my other patients had their vitals and other stats monitored every hour. Jonah had everything normal plus more monitored every fifteen minutes. His chart was blackened with tiny little numbers. This was going to be complicated.
He also had every lab known to man done every four hours. The main things that concerned us were his kidneys and his liver. Here is why:
If your liver stops producing certain proteins your body needs to make blood clots, you bleed easily. When you have a lot of IVs and lines, you need the your blood to clot quickly. If it doesn't, you receive a LOT of blood products. Cells, plasma, and all these clotting proteins. Your medicines can also only be concentrated so much. In other words, you get a LOT of fluid going IN.
If your kidneys stop making urine, its very hard to get rid of the fluid that you take in and that your body naturally makes. What do we do for people who have kidney failure? We give them dialysis. Dialysis, however, requires a big hole. And its pretty easy to bleed a lot out of big holes, so if you are going to have kidney failure, you need your liver in good working condition, making all the clotting proteins it is supposed to make.
So, either your liver or your kidneys can fail, but it is really bad news if both stop working. So basically, my job every day was to do all the math on Jonah's intake (all the fluids, medicines, etc going in) and his output (urine, blood, vomit, etc), as well as looking at all the labs every four hours and all the medicines he was on and figure out if his liver and kidneys were going to start working.
So initially, we knew he was in liver and kidney failure. He wasn't producing any liver proteins, and so we had to continually replace all of them, so that he wouldn't bleed out of his lines. However, this meant that that in the first 24 hours of his hospital admission, he was given almost a liter and a half of fluid. That was equal to half of his dry weight. However, his urine output was practically zero (hence the kidney failure). So, lots of fluid going in, nothing coming out: Jonah began getting puffier.
So although his liver was shot, we knew the one chance he had to live was if his kidneys began working again. Throughout his 9 day stay in the ICU, each day I went into work wondering whether the Jonah had peed at all overnight. If so, he was going to have a chance to get rid of all the fluid we were pumping into him, and have a chance to survive.
However, every day, when I got to Room 8236, the chart that awaited me had bad news. Each day, the first thing I raced to was the urine output column: 40 milliliters in 24 hours. Ouch. His daily input was hanging around 900 to 1,500 milliliters- he was gaining around a liter of fluid a day.
By the end of nine days, he was bigger than an overweight 9 month old.
The thing that killed me was that none of the doctors ever really told his parents how bad it was. One day, they were taking a much-needed break down in the lobby and saw me leaving. His dad pulled me aside and asked hopefully how he was doing. That particular day, he had been bleeding immensely out of his umbilical line and we almost could not stop the bleeding. I had no idea what to say. Shouldn't the doctors have let them know how close to the edge he was?
Each day, Jonah looked worse and worse. My second to last day of the rotation, one of the attendings told me that Jonah had the worst case of edema he had ever seen. Jonah's whole-body edema was so bad that he even had chemosis, a condition in which the water accumulates under the whites of your eyes and makes you look really freaky. Not that his eyes were open; his swollen lids spared his parents from seeing it.
The last day of my rotation, I showed up almost 30 minutes late due to the OU parking office accidentally shorting me one day of my permit, hence leaving me without a parking spot and scrambling to find one on our cramped campus. After I walked into the resident room, I grabbed an exam sheet and headed over to 8236. He had looked so ghastly and awful the night before. Did he pee??
As I approached the room, I saw a huge crowd of crying family members gathered around the doorway. I turned around, threw the sheet into the trash and walked back.
Over night, the attending had informed Jonah's parents that after 8 days of liver and kidney failure, the chances that he would recover were basically zero. Although he was on a lot of pain medication, he was probably still suffering. That kind of edema would be incredibly painful. And so, they took him off all his drips and the ventilator early that morning. He lasted on his own for almost five hours before my arrival. After I'd seen the family crying, I sat down in the resident room for a moment to think. Jonah died less than five minutes later.
I went in to hug his parents. After coming in to see him every morning of his stay, I had a lot of internal emotions toward the parents and had prayed for them a lot. They looked awful and were sobbing. Although Jonah was so swollen, I grabbed his little hand. You could still see the softness of his little tufts of golden hair. Oh...
And so my very last duty on that rotation was his death summary. And so, this is why I can never work in a children's ICU and also... why I continue to eagerly anticipate the day when there is no more suffering.
