Thursday, January 30, 2014

five days in the hospital-- a story


This was dawn from our hospital room on the last day of our stay. What went through my head was: "Oh, morning, at the brown brink eastward springs," a line from Gerard Manley Hopkins poem God's Grandeur. Sorry, that's just the way my mind works. 

The big story in our lives of late is that my youngest daughter was in the hospital for five days with a concussion. Before telling the story I'll skip to the conclusion: she is now completely alright, at home, and her old self.

Not every moment of the hospital stay was terrible and some of it was on the luxurious level of what I would describe as boredom. When the feeling of boredom returned, I knew we were truly fortunate. But much of the time I was too worried to be bored, suspended in a state of vigilance that made me insensible to time and made it impossible to pass the time with anything as mundane as reading, television, or even Pinterest--they all seemed intolerable. For most of the time my worry was held in check by a fair amount of certainty that everything would be ok, but the pull was relentless in both directions, and created a surreal feeling of tension around me that did not really go away until the very end. I should also mention that I must have the best Facebook friends in the entire world. I felt a little tentative at first about posting anything on Facebook, knowing that once people knew, they would want to know updates and social media anxiety was really the last thing I needed. But in the end I was glad that I chose to share it there because I did feel extremely supported that way. There was one night in particular when, upon going to bed in the fold-out chair next to Elsa, I felt an almost supernatural peace in our room--like a brightness filling the air and hovering all around me. I really felt that this was owed to the prayers of friends and family.

But there were also some dark dips when I felt extremely alone and my thoughts started going into bad directions, into the possibility that my little girl might not be alright--might in some way be altered permanently after this head injury, because for so many days she was not herself. And then there were other even worse moments when I was standing at the edge of the abyss of the possibility (yes, the possibility alone is an abyss) of losing my child, and felt just a tiny bit of that horror which is unbearable.

I have lived a relatively insulated, healthy life. I am hardly an authority on suffering. But I have to wonder if watching your child suffer, facing the possibility of losing your child, or-- God forbid-- losing your child are not the worst kinds of human suffering possible. Everyone seems to agree about this and talks about how preferable it would be to take your child's place in an illness or injury, and now I understand. It was hard to be at a children's hospital and see the other children on our floor and their parents keeping vigil, moving alongside me in the kitchen area where everyone shuffled around quietly and soberly, making tea and coffee, getting ice water, heating up meals in the microwave, then shuffling back down the door of their child's room.

I knew that I was in a fortunate category since we were only there for a concussion, and what the doctors were calling, after a while, symptom management. We were not there for cancer or a rare blood disease. But it still felt as if we had tumbled through a hole in the surface of everyday life--Life-- and placed in a strange cul de sac of inertia, vigilance, and fragility. I drive past hospitals all the time and forget that inside them people are going through these things.

Incidentally, I have a newfound respect for people who work in hospitals-- probably nurses first and foremost, and then chaplains, and lastly doctors. Doctors come in different stripes and flavors and some I like more than others-- and of course they deserve respect for the huge responsibility they carry-- but in many ways they are further removed from patients--and from suffering-- than nurses. And I don't think that doctors in hospitals really see their role as one of healing. They save lives, they intervene, they deftly problem-solve. But in a case like ours, once the initial crisis had passed, they were largely distant, at a loss for suggestions, while Elsa struggled to heal and get on top of this thing that had dragged her under.

Nurses can leverage a kind of distance in their mannerism as well, and I imagine that they have to learn the art of non-involvement--it would be detrimental in the long run and probably unsustainable to become emotionally involved with patients. But the disposition of a nurse coming in and out of the room can make a big difference for a patient (or in my case a parent who feels just as helpless while staying by her child's side), and, I came to realize, that just as in motherhood, which also consists of doing things for people who are dependent on you, there are varying degrees of willingness among nurses. There was one nurse who, on our third day, finally offered us the bath tub on our hall, which no one else had told me about. I'm sure that this created extra work for her or for someone-- mopping the wet floor afterward, dealing with the dirty linen. But it meant so much to be able to finally wash the vomit out of Elsa's hair, and it improved her mood hugely to have a bath. I had to wonder why none of the nurses before had mentioned it as a possibility. I am not judging them though. Serving other people day after day is hard work, and I have days as a mother when I am willing to take those extra steps of servitude, and other days when I go into self-preservation mode and only do the bare minimum. Life is exhausting, to be sure, and you never know when you are dealing with a justifiably exhausted person. But sometimes that willingness to serve a little bit extra does make a big difference. Being a patient (or a parent bound to a child patient) is a very vulnerable and helpless position.

"And a crack on the ceiling had the habit / of sometimes looking like a rabbit." I could never figure out if this beach-blob mural was intentionally or unintentionally rabbit shaped. I told my daughter that now she had the distinction of a long hospital stay, like Madeline in the book. She loves Madeline, but somehow was not cheered up by this.

As you can see, I had a lot of time to form opinions about the hospital and the mainstream medical system.

But I digress. My daughter's concussion happened a little before 10:00 a.m. on a cold Thursday morning two weeks ago now. We were having a slow morning and my oldest daughter was playing after having done a few homeschooling lessons that morning. I was sitting with my laptop at the dining room table and I remember my four year-old running into the bedroom in the periphery of my vision. In my memory it seems as if she was running quickly to get something and bring it back out to the living room where she and her sister were immersed in their usual pretend play with dolls. But then I heard the thump of her body hitting the floor and a loud wail, so of course I ran into the room and immediately knelt beside her and held her and started to look her up and down. I thought at first that she had just had a hard fall-- nothing terribly unusual-- but she was crying, "My forehead, my forehead," and then she started acting very strange-- her head lolling back and her eyes almost closing like she was passing out. My husband had the car at work so I called him and told him what had happened and that I was a little scared. He looked up signs of a concussion online and started telling me to check her pupils, ask her questions, etc. I told him she wasn't showing any of the signs he was describing, but to just come home in the mean time and he said he would. Her pupils seemed normal and she was talking, but scaring me by acting as if she was going to pass out. I was afraid to let her fall asleep and kept talking to her and holding her upright. Then, while on the sofa, facing me on my lap, she threw up everywhere.

I called my husband back and told him I was calling 911. From there the day just escalated in a fearful progression. The 911 medics came and checked her out and thought that she looked ok. Her pupils, blood pressure, pulse were all normal. She was still talking coherently. They offered to "take her in" but implied that it would just be a precaution, since all her vital signs were normal. I was very wary of having her go in the ambulance and incur a huge medical bill if the medics were saying she was ok. We have had ER false alarms in the past which we are still paying for, and unfortunately, it is just hard to err on the side of precaution when a $600+ bill is looming in your mind. So I was really weighing in my mind whether or not to take that step. The medics said she should be seen by a doctor that day, and I knew that I would make sure that this happened. But after they left my instinct that something was wrong grew more intense.

She had gone instantly from being playful, energetic, chatty, to looking floppy, drowsy, and distant. I got on the phone to get an appointment with her regular doctor. They were booked and offered an appointment at 9:30 the next morning. I said absolutely not. Looking at her, I said she needed to be seen as soon as possible, so the administrative assistant found me another appointment at a different office in town, which was actually closer to our house. I drove there right away, growing more alarmed because Elsa threw up again on the way to the doctor, and then again when I carried her into the waiting room. By that time I was scared and a little panicked but decided to wait to see what the doctor would say. When she finally walked into the examination room and saw her she almost immediately said she needed to go to the emergency room. That was when I felt truly terrified. The doctor offered to call an ambulance but I decided to pull myself together and drive her. "But honey, you're stressed," she said. And when she said that, I burst into tears and accepted a hug from this older woman who had a grandmotherly demeanor and an accent that I thought was Scottish. She hugged me and told me she would be praying for us, which registered with me as unusual for a doctor.

I was still trying to stay as disentangled as possible from any dramatic step that would incur a huge medical bill, but there I was, driving to the ER, as I probably should have from the beginning, in spite of the confusing 911 experience. I don't know whether to be ashamed by this or not, but it was the reality hanging over my head. We have medical insurance through my husband's job, but it is always impossible to tell beforehand how much it going to be covered. Of course, several more steps down the line I stopped thinking about the bill altogether-- which I wish could have been the case from the beginning, but I'm afraid that was just not the reality.

In any case, driving her to the hospital-- waiting at red lights and patiently lining up with a procession of cars entering the highway (driven by people insensible to my emergency) while I was internally swelling with panic was surreal and frightening. I had to talk myself through each detail of the road to keep from driving stupidly, but we made it fine. I parked in the ER circle and I carried her inside, where again she threw up immediately. Thankfully they took her back right away. A really kind nurse told me to take a deep breath and to go park my car and come back to room #3. When I finally joined my daughter in the room I just remember that things happened fast and it was decided fairly quickly to give her a CT scan. They told me that they just got a new scanner which was lower radiation and safer for children. The scan only took about two minutes. Silly--I remember there was a Smurf cartoon playing on a big screen on the ceiling and the mannerisms of everyone at this children's hospital so far were making things better-- they seemed to know how to make children feel less scared. Elsa was very focused on me and scared of being separated, but really, from that point on we were basically attached inseparably for five straight days.

The scan came back fine, and that was really when I was able to relax a lot. The most dangerous and scary outcome of a head injury was ruled out by that scan--no fracture, no blood--and after that I was just so thankful. They gave her a medication for nausea and finally, now that she wasn't being jostled and moved around from place to place, she did what she had been trying to do ever since the fall and simply fell asleep. The ER doctor and the nurse said that most likely when she woke up she would be able to go home. But after an hour or so she woke up and immediately vomited again, and that changed everything yet again. The doctor seemed conflicted but after a while said that her recommendation was to admit her for the night. She said she did not admit many concussion patients-- maybe two a year-- but in this case it would be better to keep an eye on her rather than have her go home and get dehydrated-- unless I felt really strongly about taking her home. I said I was worried and also thought she should stay. A little later, I felt more conflicted about her staying overnight. They put an IV in her hand and after she got some hydration she started to be more wakeful and began talking again more like her normal self-- though not totally. But she started to say that she wanted to go home and seemed afraid of being in the hospital. I told her we would be put in a more regular room-- not like the one we were in, which was cramped and had no windows. She said, "I hope it has a normal bed, like yours and daddy's bed, or like my bed." When she said that, my heart leapt because I knew that she was thinking pretty clearly. Once she was perking up like this, I had a strong impulse to whisk her home right then. I think I was just not accounting for how much, at that point, the hydration from the IV was contributing to her acting well and normal.

To be brief, the one night of "monitoring" turned into four nights, as she just continued to vomit through the next day and night, and again the next day and night, and so on until she finally started holding down food and water on the fourth day. The doctors seemed a little baffled and at one point even discussed the possibility of doing an MRI. They also took an x-ray of her stomach just to make sure that there wasn't anything amiss there. But the neurologists that checked her many times thought that she looked very good and there wasn't anything neurologically wrong, so in the end the doctors just kept calling her vomiting a symptom of the concussion, nothing more-- albeit atypical for its long duration.

Obviously she was not herself on the second and third day after all of this vomiting, and what was hard for me was trying to discern how much of that was due simply to the exhaustion of the vomiting and lack of calories in her rather than some scary brain-related outcome of a head injury. I only really began to feel reassured when she started holding down a little food again and her personality began to re-emerge, like a bright little light, on the fourth day. At some point I told her to fight the vomiting. I knew she wanted to go home. We had a serious discussion. She understood that she would not be able to go home or get that horrible plastic contraption out of her hand (the IV) until she could stop throwing up. I really think that she did start to fight it on the fourth day. She was angry at the sight of the pink plastic bucket that I kept always at arm's length and if I offered it when I heard a little gagging sound she would push it away with irritation. I was proud of her.

So this is a little long. I suppose my blog is, instead of growing in a wider appeal, becoming only more narrow as time goes on. Part of me wants it simply as a record for my children for when they get older. I don't know who else is going to read this with interest, except family and close friends (I think I know who you are). I am not that good of a writer to make such a story interesting for all, but here it is. Already I can see that there are details I am leaving out, maybe things Elsa will want to remember when she is older, like the fact that, in our final hours at the hospital, when we really were at a loss for how to spend the time, a funny med student volunteer showed up and made her happy by telling her ridiculous jokes, finding a Wizard of Oz coloring book in the store room to let her take home, and also getting out tons of really messy glitter for her to use in an art project.

Our first night in the hospital, when I was simply grateful that the CT scan had come back fine, I had the desire to find some kind of prayer of thanksgiving and I thought I remembered there being an Akathist of Thanksgiving somewhere in existence. There was! I found it online on my phone and read it and cried and have recited it many times since coming home when putting my girls to bed. It is really beautiful,  and startlingly unexpected--all the more so because it was composed by a man in a Russian prison camp-- unbelievable to keep in mind when you read this poetry. So I am posting a link here to the full text and quoting only some of it here. And that will be my poem for today, which is technically Poetry Wednesday in Flakedoves time, which is totally different than real world time, if you go in for that sort of thing.

Lord, how good it is to be Your guest: the delicately scented wind, the
mountains stretching to the sky, the waters reflecting like infinite mirrors the
golden rays of the sun, the airiness of clouds. All nature secretly whispers,
full of tenderness, and even the birds and beasts bear the mark of Your love.
Blessed is Mother Earth with her beauty which is transient, making one long
for the homeland which is eternal and where in imperishable beauty, rings
out: Alleluia. 



5 comments:

Manuela said...

First of all, the picture is stunning. Secondly, I am so glad Elsa is relieved, and I think it is one of the worst sufferings that can happen to you, to loose your child, I mean. Just even imagining it is unbearable.
I am glad you kept all of us updated and felt supported.
Also, I think you are that kind of writer who tells stories that not only family and friend will want to read. Yes, you are.

Julia said...

Thanks, Manuela. ❤

Kate T. said...

Oh, Julia, this was harrowing to read. I'm glad Elsa is OK. It also makes me newly grateful that I'm able to take my kids to the ER without a second thought if necessary, a fact that I take completely for granted. Without being glib, please move to Canada.

Veronika said...

Reading this post I just lived those 5 days through with you - with more details this time. I could imaging the despair when the doctors were puzzled and were thinking of MRI - I would probably need a doctor for myself by that point. I had cold sweats reading about you agonizing to use or not to use Ambulance. Why a mother has to go through such a "choice"? But being broke I understand so well, that you cannot help but think about the expense - medical system has to be changed and healed. We can walk to our ER - I will never take it for granted again.
So happy that Elsa is well.

Evelina said...

Two things I found absolutely terrifying in this story, the abyss of the possibility that something can happen any time, that from being normal and bored and moderately happy one can fall into the reality of losing it all; and the necessity to hesitate over going to the ER. The responsibility for the decision shouldn't be on us, non-specialists.
And while for the first thing we cannot do anything but pray, I really hope there can be done something for the second.
And I really loved the episode with the doctor.
So glad it's all over and well.