Saturday started out bad - the six in the morning blood work had shown her platelet count to be under ten thousand, the critical line where, “...bleeding in the brain was possible, internal bleeding was likely…”, death was imminent? Still, when I walked around the ward, asleep, her head on my shoulder, her fever was down to normal and her blood pressure was stable. She had just finished “being Hunter”: laughing, playing, looking for any shenanigans she could think of getting into. The IV tap was painful but she had already figured out a way to deal with it. She was getting better, wasn’t she?
As the day progressed, her fever came back, her breathing grew difficult, the struggles to clear her nose, the deep raspy mouth breathing. Then came the voice calling me.
They say our lives are full of rhythms. Our heartbeats, our breathing. As a young man I was always fascinated by the sinusoidal waveform - like a snake undulating across the desert, never too fast, never too slow, definable (predictable?) but full of unpredictable results. Rhythms get intermingled sometimes; two become one, supporting, growing together or breaking and canceling.
Rhythms get disrupted, of course, sometimes for the good, sometimes for the bad.
Hunter had started school in August. There were quite a number of crying departures but slowly but surely she became accustomed to the routine, the way the school and her class worked. It got to the point that she looked forward to going to school and ever so slowly she started to reluctantly leave each day. We had good reports about her progress, how well she was adapting, how she was smart and learning so much. As parents I don’t think we could have been happier.
Hunter always seemed to have a runny nose, even before she started at school. We did what every parent does, a little of this, a little of that, visit the doctor when we were unsure. We seemed to manage it ok. When there was a fever we naturally got worried; but, Hunter always seemed to pop out of it: 24-48 hours later she was herself again.
The colds came a little more frequently when she started school - that’ll happen: early school/preschool is a ripe playground for viral infections. They even went through the (what seems to be the norm in Vietnam) hand, foot and mouth disease spiral. Hunter didn’t get that, thankfully, but even now, months later, there is a rigid protocol of “wash your hands”.
The latest cold seemed to be going a little longer than normal. Hunter was still herself, even declaring she was bored with us during the Christmas holidays getting dressed and ready to take herself to school. The fact that she pulled on her favourite hoodie and some shoes and a small backpack was pretty impressive. No pants, mind you, but she wasn’t concerned; neither were we. There she was, standing patiently at the elevators, waiting for one to arrive and take her downstairs. Might be stupid sick, but dealing with it.
The cold. Runny nose primarily, but with some green discharge. And a persistent, low fever. Nightmares, epic nightmares, with a little two year old body shaking in fear, was something new. For three days we were wondering, doing what we have done in the past, but still wondering.
Her mom had already made an appointment to see our preferred pediatrician for Thursday afternoon. When we were getting ready to visit Thy noticed the little red dots on and about Hunter’s feet and lower legs. A few on her belly. Some on her scalp. Tiny, almost inconsequential. Maybe a heat rash? Thy wondered if it was Dengue. I did my search on the Internet and the rash that goes with Dengue seemed to be far more pronounced. Couldn't be, could it?
Sixty seconds at the doctor’s office and her preliminary diagnosis was maybe Dengue, maybe something called thrombocytopenia. Couldn’t do anything now, need to bring her back in 24 hours, standard protocol for such a speculation. I remember asking the doctor how can anyone do blood work on a two year old? “Not easy and it will hurt.”
Thursday was full of unknowns, lots of searching the Internet; Thursday night to Friday at about two-thirty in the morning was difficult as her fever kept coming back after 3-4 hours of baby Tylenol. We gave her one more dose to reduce her fever again and then fell back asleep. Thy woke me at about eight o’clock with, “Angel she has a nose bleed.” It wasn't big, just a little dried blood under one nostril, but still it was her first one and no obvious reason why. “Fuck this, we’re going to the hospital.”
Thirty seconds of examination by the emergency physician and it was, “We are checking your daughter into the hospital and we are going to do some blood work as soon as she is on the floor.”
The human body is an amazing thing. You get an infection and your immune system says, “Ok, call to arms; let’s get busy and kill this thing.” And, generally, it does - we get infections all the time and a properly in tune immune system is kicking ass on a regular basis. We also get little nicks and scrapes and bruises all the time - platelets in our body help take care of those, by assisting clotting, so we don’t bleed to death. They come from the bone marrow, if you can believe that.
In this case our little girl’s immune system took note of the viral infection and went to work and continued to go to work: it started to see the platelets in her body as the enemy and decided to “kill them, kill them all.” They call it ITP: Immune thrombocytopenia and it manifests itself on the skin of the afflicted person as “...superficial bleeding into the skin that appears as pinpoint-sized reddish-purple spots (petechiae) that look like a rash, usually on the lower legs.”
Exactly what Hunter had.
“Make an appointment with your doctor if you or your child develops warning signs that worry you. Bleeding that won't stop is a medical emergency. Seek immediate help if you or your child experiences bleeding that can't be controlled by the usual first-aid techniques, such as applying pressure to the area.”
The first blood work came back with a poor result - 14,000, where typically you have between 150-400,000; Hunter’s was way, way down. That’s when the first paediatrician said that the number of gravest concern was anything under ten thousand. There was no result for Dengue, but they never trust the first sample so they would have to do it again the next morning, at six o’clock to check again. “Try and get some rest.”
Do you know they ask at least one of the parents to leave the room when they are taking a blood sample? My wife stayed and I left because I was told to. In a way I was relieved: I hate blood sampling and if you hurt my child I am going to hurt you is a parental mantra I deeply subscribe to. I was worried I might punch someone out. Then again I cannot believe how crushing it is to hear your child screaming, “Daddy, Daddy, Daddy help me”.
You know what is worse? “Daddy, Daddy, Daddy, save me.”
I listened outside that door until I could not listen anymore; I wasn’t crying much, but inside my head I was screaming. I went home that evening to get some basics and kept bumping into little pieces of Hunter. Her little shoes parked near my computer - how many times had I asked her not to do that?
Would I get to ask/tell her again?
I stepped into the shower, not so much to wash, but to sit on the floor and cry and scream and cry some more. I can remember how I kept saying to myself to stop it, to pull it together, to be strong for my family, to be supportive and not be such a baby.
Then I would cry some more.
My wife and the nurse got the bleeding under control, very quickly; they didn’t need me, that was for sure. Hunter was still crying a little, but was probably more scared than actually hurting. The doctor came and said that everything looked ok, she wasn't bleeding internally and this wasn’t as serious as it looked.
They did more blood work on Sunday morning. More screaming for help by Hunter, more guilt and shame on my shoulders.
While we waited for the results I encouraged Thy to go home and get cleaned up; she needed the break.
I sat on the couch with Hunter on my chest and shoulder, her little wheezy snore reassuring me that she was still ok. The doctor came in and said, “I have good news: 28,000!”. I didn’t even say thank you, I just started to cry, loudly, running nose, body shaking sobs. Hunter was so tired she didn’t even wake up. The doctor moonwalked out the room as quickly as she could and I was left with this immediate sense of relief and then overwhelming exhaustion. The little monkey had turned the corner.
Thy came back shortly thereafter, and because she had already bumped into the doctor, she had heard the news as well. More crying, more sighing - I suspect we both wanted to scream, but we didn’t.
They put in an IV tube in that day - Hunter wasn’t really taking in that many fluids and it would help with platelet rebuilding as well. Hell, yes, give her some fluids! (Side note: if she had had Dengue and they had started giving her fluids right away on the Friday she might have suffered from pulmonary edema and possibly died - man, oh man)
They decided no more blood work until Tuesday morning, at six, again, to give her body time to rest and recover. Thy and I talked about it and I was sure I was staying this time; the least I could do was be there to cradle her head and, well, to be honest, just be there. Undeterred by the awkwardness of the now fully functioning IV Hunter started to look and sound better. They had to draw blood from her leg since her hands and arms were too beat up. “Not easy and it will hurt” was the understatement of all time.
She was still having these acting out moments of utter horror and outright anger at Thy and I - swinging out and hitting us was not something we had ever seen before. We were reassured, by several nurses and doctors, that this was quite normal, she was just stressed. The sooner she got out of there the better. No fucking kidding.
And that happened on the Tuesday - platelet count of over one hundred thousand; take your daughter home.
Hunter went back to school the following week. There was a bit of an adjustment required; it was like she didn’t trust anyone in authority. She would wake up at night, four or five or six times, screaming, nightmares are the likely cause (Side note: night terrors, night sweats are a symptom of ITP - those nightmares before she went into the hospital might have been a precursor to the episode she went through; the ones now are different).
And of course I will never look at a cold or fever the same way again. The rhythm of life of our family, of ourselves and of our little girl certainly ebbed and flowed in some ways we never expected. I want to say I am hopeful, but still wary of any little thing. I am certainly respectful of what happened and cautious of what could happen next. Up's and down's and all around's, as they used to say.
I’ll be watching.