Monday, November 1, 2010

What We Didn’t Know

[Disclaimer: I have not reviewed this post for typos because once I got to the end of it, I just couldn’t make myself read it again.]

November. My goodness. It’s hard to believe. Another month dawns without our girl. And yet we keep going. Somehow.

I have recently found myself preoccupied again with the terrible memories of the moments and days we spent in the hospital with Hudson. I have mostly refrained from writing about them, with two notable exceptions that I can recall here and here. Those moments and many others still haunt me every day. I know that over time, they will fade, but I also know from my experience of having watched my mother die over the course of eight months from pancreatic cancer (another thing I never thought I would be able to live through, but somehow did) that some of those images will never, ever go away. I still remember several moments of that awful time with my mom as if they happened yesterday. I can still feel what it was like to be there.

But I never wrote about those things. I don’t know that I ever even spoke of any of them again. They’ve just been left to sear themselves in my brain. And while I’m still quite sure that some memories of our time in the hospital with Hudson will be with me forever no matter what I try to do about it, I hope that by getting some more of them out in words might help take away some of their bite. One moment in particular is one I’ve been contemplating writing about for a long, long while, and still continue to put it off, because of everything I’ve written so far, it is the saddest and most haunting, at least to me. So I will put it off again today. But I think it is coming soon because I’m not sure how much longer I can hold it.

But the past few days I’ve been thinking a lot about that first day and how much it hurts when I realize that although we were scared, justifiably so, we had no freaking idea how scared we should be. I suppose at the time, that was probably a good thing, but in hindsight, I wonder if I wouldn’t have been better off having some idea of what we were dealing with.

When I took Hudson to the ER around 1:30 on Monday, May 10, it was after a morning of sitting at home with her resting quietly on my chest, head on my shoulder, mostly asleep (at least that’s what I thought). We’d been to the pediatrician, who had examined her and sent us for some lab tests, but told us to go home and wait for the results. I kept asking Hudson if she wanted some milk or water, and I’d hold her cup up to her mouth, and she’d just say, “No.” Finally, I got concerned that she might be getting dehydrated, so I called the doctor again. She tried to take me through some simple tests to see how Hudson’s capillary refill reaction was, but I couldn’t really tell her anything over the phone. I was relieved when she finally just said, “Well, let’s go ahead and get her to the ER for some IV fluids.” I was still not convinced that this was just a bug that Hudson was going to get over, so the idea of going to the ER seemed very good to me, although when I asked if they would evaluate Hudson anymore, the pediatrician said no, because she’d already had a full work-up that morning.

So we went to the ER. I stood in a short line to get registered, but then sat down and waited for about an hour and a half, watching children who were supposedly the “patients” run screaming and laughing around the room—how, I kept asking myself, are those children sick enough to be in line ahead of my child at the ER? Hudson continued to sleep peacefully (again, so it seemed to me) on my shoulder. The triage nurse finally called us in, and frankly, I did everything I could to try to get Hudson seen ASAP. I told her that Hudson had basically been in this same position on my shoulder, hardly moving, most of the morning. The triage nurse showed me a room schedule on the computer screen that showed how crowded the ER was at the moment, but said she was going to try to get Hudson back there right now. She called someone on the phone and said, “I have little Hudson Chaney up here and she really looks pretty crappy.”

Somehow, we got back to a room in the ER. I really don’t remember a whole lot of the details of getting there. The next thing I really remember is seeing her laid out on the bed, head turned toward me with her eyes closed, and then seeing the nurse and the IV tech exchange a glance when they stuck a needle in Hudson’s hand and she didn’t flinch. Not even a twitch. It was then, for the first time, that I started to get scared. Then, after about 20 to 30 minutes of IV fluids, when she didn’t start to perk up, I started to get really scared. I knew that that was what should be happening, and the fact that it wasn’t was not a good sign. But I still had no idea how scared I should be.

At some point in there, Ed arrived. He had no idea how serious things were getting, either, but had just wanted to be with us since we were in the ER. The next thing I remember is going down the hall with her for a chest x-ray and a CT scan. (Later, after Hudson died, I found in my purse the little sticker, never peeled from its backing, that they gave her when she left x-ray—it’s round with a picture of a bear with his skeleton visible, and says “I got an x-ray.” I’ve been unable to part with it, but also have no idea what to do with it, either. Right now, it’s stuck in the sun visor over the driver’s seat in the car.) She was able to sit upright, with straps on her, for the chest x-ray, but I remember her seeming pretty out of it on the CT table. We then went back to the ER room. While we waited for the results of the scans, I remember several times when Hudson would look over at us and reach out for us, only for us to have to push her arm back down because she was yanking on her IV line. How I wanted to just scoop her up and hold her and make her feel better.

The doctors finally came back in with the results of the CT, which showed a pretty major sinus infection behind her right eye, which explained the swelling she’d had there since about lunchtime the day before (when it was barely even visible, but just enough for us to wonder if it was swollen—she’d had no other signs of a sinus infection except a pretty mild runny nose, and of course, the fever). This one ER doc, who seemed about 12 to me (no offense to all my friends who are current and past medical residents), told us that this was often associated with meningitis in children, so they wanted to start antibiotics immediately in case it was bacterial and they also wanted to do a spinal tap.

I really don’t recall how I reacted when he said “meningitis” and “spinal tap.” I suppose it’s possible that the protective effects of shock were already setting in. I don’t remember if I panicked or freaked out. Even now, I don’t think I had any real previous mental associations with meningitis, so nothing was really triggered in my head. I don’t remember thinking much at all except that they would do whatever they needed to do and that Hudson would be fine. I just didn’t imagine that whatever was wrong with her was something they couldn’t cure. I seriously don’t think I ever doubted during those first several hours that they could fix her.

While we waited for the results of the spinal tap, the 12-year-old ER doc told us that the meningitis was likely viral and not bacterial, given the way the symptoms had come on. That worried Ed and me—all our past experience told us that a bacterial infection could be treated with antibiotics, while a viral infection was just a wait-and-see thing. Later, they confirmed that in fact, Hudson had bacteria in her cerebrospinal fluid. By this time, a PICU Fellow had come down to the ER by this point to help assess whether Hudson should be admitted to a regular floor or to the PICU for intensive monitoring. I remember, with utter clarity, the moment when we wondered out loud to the Fellow whether it was better that it was bacterial since it could be treated—she looked at us with a doubtful expression and sort of shrugged her shoulders and said it really just depended on the bacteria. That is the one time during the time that we were there that I feel like someone was not totally honest and upfront with us. Maybe she had a good reason at the time, but I still resent it somewhat. I thought antibiotics were magical and that as long as they had gotten the right ones into Hudson, she would be fine. Of course she would. How could medicine not be able to cure something like this? What we didn’t know.

My recollection of how we got from the ER to the PICU is also fuzzy. There are only a few other things I remember about that first night, things that seem so very different now that we are on this terrible side of things. First, the PICU Fellow in charge (Dr. X, whom I’ve written about before here and here) told us that he could tell from how we looked that we knew this was very serious (I don’t remember this too well, but I guess I must have been crying a fair bit already). He told us then that many children with this condition can end up with permanent brain damage. Even then, I still didn’t really believe that that would ever be the case. We’d gotten her to the hospital so quickly. She had antibiotics flowing into her 40 hours after she first had a fever. She was going to be fine. Although I think I remember asking one of the infectious disease specialists if that was soon enough—it seemed very soon to me. I remember another shrug and him telling us something like “We just don’t know.” I guess I do wonder, too, whether these two doctors knew more than they were telling us at the time. We learned later that with meningitis, the CSF is usually cloudy with white blood cells trying to fight off the bacteria—in Hudson’s case, it was cloudy with the bacteria itself. We also learned later that her white blood cell count was dangerously low. Apparently, it was already obvious to them that it was going to be a very tough battle, but they weren’t that specific with us. What we didn’t know.

I also remember the nurses telling us to stay away from Google. This was a no-brainer to me. Ed and I had spent much of Sunday afternoon on Google trying to make sure that we didn’t need to be overly concerned about Hudson’s uncharacteristic fever—we’d convinced ourselves, wrongly, that she had periorbital cellulitis (an infection of the tissue in the eye socket that makes the eye swell), so we knew there was no point in trying to learn more from Google when we had the doctors right there. And yet, if I had Googled “bacterial meningitis,” I would have known immediately that bacterial meningitis was far more dangerous than viral, and that Hudson could really be in serious danger of being disabled for life or of actually dying. What we didn’t know.

And I remember posting on Facebook these exact words, “Well, Hudson definitely has bacterial meningitis. We are settled in the PICU at Children’s for the night. We are obviously frightened, but hoping that the antibiotics will do their thing quickly.” I wrote “for the night,” completely expecting that by the next day, after a night of antibiotics, fluids, and monitoring, Hudson would be well enough to move to a regular floor. I was frightened, but I still had utter confidence. I think now about the messages that began pouring in at that point and I remember being surprised at how many there were and at their tenor. But when I think about it now, I can see that everyone was probably frantically Googling “bacterial meningitis” and learning what we didn’t really know—that instead of being “frightened,” we should be absolutely terrified. I’m sitting here reading back through them now, crying, as I see the optimism in everyone’s posts, but also the fear that seems to be hidden behind them. What we didn’t know.

Honestly, I don’t guess it really matters now what we didn’t know from the time we got to the ER. We knew only about 12 hours later that things might be so bad as to be irreversible, when Hudson’s pupils started responding unevenly to light. Maybe it’s better that we had those 12 hours to hold on to some hope that she would be OK. But part of me really wishes I’d had some idea of what was in store for us. I think of the time I wasted that night trying to catch a few minutes of sleep. We were still under contact precautions because they didn’t know whether Hudson’s meningitis was contagious yet, so I was trying in vain to sleep with a mask over my nose and face. I was in a foldout chair behind the bed. I kept hearing all the monitors beeping. Ed was sitting at the bed beside, and I remember at one point hearing him laughing and saying to Hudson something like, “Yeah! You have a light on your toe, don’t you?” I imagined the nurse was checking her oxygen saturation monitor, which glowed with a red light, and I guessed Hudson was staring at it, maybe even pointing. I don’t know. But what I do know is these were the last hours that Hudson was ever conscious. That might be the last conscious interaction she had with any of us. If I’d had any idea what was going to happen in the next few hours, I could have been standing right by her side the whole time, looking at her precious face, letting her look into my eyes during the moments that she had them open. Then I might actually remember the last interaction I had with her, instead of just having these mostly fuzzy memories about the whole day.

What we didn’t know. Fuck.


  1. Oh, Mandy and Ed. It breaks my heart again. I hope and pray that writing it down takes some of the clarity away from these memories. If only there was one single thing we could do besides listen.

  2. Mandy and Ed, I too wish there was anything we could besides listen. I'm so sorry.

  3. I so hope that by all of us bearing witness it helps ease your pain. I so wish there was something we could do, but know that there really isn't. Sending love and light to you and Ed.

  4. We don't get to know what is going to happen. It just never works that way. So be kind to yourself. You loved her completely every minute of her life. I'm praying for your peace and comfort.

  5. Mandy - Thanks so much for sharing with us. I feel like your reactions of what you didn't know were normal. After all, if you knew how Hudson's hospital visit would end, you wouldn't have been able to be a calm positive spirit for her final conscious hours. Please don't be haunted by fuzzy memories because they are still memories. There are of course the unfuzzy memories like the found video of Hudson and her friend in the hallway while you were on vacation. That video was so precious and I think of it often, as I think of you and Ed often. Anyway, I'm here late at work and a picture of Hudson is by my side reminding me that having a job and being able to put in a day's work is One Good Thing.

    With love,
    Alex K

  6. Oh Mandy. I am so, so, so, unbelievably, unimaginably, heartbreakingly sorry.

  7. Oh Mandy. As ever, I am so sorry. I hope writing about it helps a little. Andrea has it right; if there were something I could do besides listen, I would. Oh, I would do it to see Hudson in a new Halloween costume at St. Ann's. I so would.

    - Susan W.

  8. Still carrying your heart with me, friend.

    Love you,
    Kelley B

  9. This brings the awful few days back for me very vividly. I can't fathom your pain. I just wish it weren't so.

  10. I am so sorry Mandy. I just wish it weren't so. I know it has changed your life and it has changed mine and others too. "For those who love, time is an Eternity."

  11. I was a very sick child and was in and out of the hospital frequently. To me, the most reassuring thing in the world was looking up---when I was terrified, in pain, and confused---and seeing my mom (and, when he could, my dad) looking confident and loving and, most importantly, "normal," meaning asleep on a cot sometimes. It made me not so scared; it made me calm. Sometimes just being you, in whatever capacity, is exactly what a sick lil' pumpkin needs. I am positive you provided comfort and love to Hudson when she needed you most. It's a testament to your mothering nature, not something you should bear with sadness (though, of course, you are justified in whatever reaction you have). Much love.

  12. Through my same tears I am thinking of you and Hudson Mandy. I think of what this must feel like for you to write and I try to see those moments you describe in my mind's eye. My heart breaks for you. It is just so completely unfair for a parent to outlive a child.
    So much love and grace...

  13. oh my god. i hate the universe for allowing these events to happen to a baby loved by her parents. hate it. hate it. hate it. :((((((((
    let's come up with better antibiotics so that at least this horrific way of separating a baby from her mother will never ever happen again. not in a PICU!!!! it is sooooo wrong. so wrong. so wrong. why are we researching cures for geriatric diseases when things like this are happening in the PICU!?!?!?!? mandy, i am so sorry. so sorry. and so angry. so angry.


  14. I think Anonymous@7:02 had some very wise words. Children are comforted by their parents' mere presence, and I'm sure that it was so calming for her to see you resting. Oh, Mandy, my heart just breaks for you. I'm so sorry that this is what you are forced by the universe to feel. It's just wrong. Hang on, dear girl. Your baby pumpkin is growing and will bring you smiles. 'Til then, hang on, hang on...

  15. my heart is broken for you. in your sharing, please know that you are making all of us better parents, more attentive and grateful, better able to cling to what we've got. i hold my little girl tighter every night, thinking of yours. i am so so sorry you can't have hudson back. she certainly felt your love immeasurably in her last hours, as she did every day of her life.

  16. I have goosebumps. I am so so sorry.

  17. My heart breaks for you Mandy and Ed, over and over again. I read this post with tears streaming down my so sorry.

  18. I am so sorry for your loss. I don't think it was right of the doctors not to give you the full view of the situation at the outset. But don't kick yourself for anything that you did or didn't do or that you did or didn't know. You did the absolute best you could in a very tragic situation. Hudson was loved to the utmost every single second of her life on earth.

  19. This is heartbreaking. I find myself getting so angry about this whole situation and wanting to go back in time to fix something that can't be fixed. I'm so sorry. I think the others are right, that you gave your daughter as much love as humanly possible.

  20. No mama should have to live those things, much less relive them every day in her memory. ((hugs)) Mandy

  21. Mandy,

    It isn't fair. It just isn't.

    I am hugging you and Ed so tightly right now.

    Love, love, love,

  22. This is so heartbreaking and I am so sorry. I hope that it helped to post this. So often, hindsight just sucks.

    I also want to say what others have said as to how your generosity at sharing these most painful and intimate thoughts have changed me and how I parent my children. I hold my children tighter. I am more patient and try to look beyond frustrating behavior and see the amazing child beneath. Because I don't know what is coming next and I want to savor every moment.

    I hate that you are haunted by what you didn't know. I hope that by bearing witness we help ease your pain just a little. I wish I could do more.

  23. You did everything you could. You held Hudson all morning and soothed her as she slept. You were her advocate with the doctors (both the pediatrician and the ER docs), nurses, and staff. In the PICU, you comforted her and provided a calming presence so she wasn't afraid. There is no way you could have known what lied ahead. You did the best you could at the time and you were the best mommy you could have been to her. From reading this blog, I can say with confidence that Hudson lived every minute of her too-short life knowing how very, very much her mother loved her.

  24. Mandy, wow, this post really resonates -- as so many of yours do -- with me. I play back Veronica's last day of life and well, it's just too painful to recall how totally and utterly relaxed I was that day. I had lunch with my girlfriends. Was planning a Friday night happy hour. Cavalierly told the triage nurse at her pediatrician's office that morning that, "sure, she can be seen tomorrow since her regular doc isn't in. I think she just needs some Zantac." All the while, Veronica was in florid heart failure and had only hours to live. Fuck is right.

    I spoke with a pathologist who specializes in pediatric sudden death (how's that for depressing!) after V. died. He said he sees it all the time -- kids seemingly well one day, only to be dead 12, 24, 48 hours later. And the parents have NO idea....completely blindsided. Kids will fool you that way, he said. Made me feel a bit better.

    Hugs to you Mandy.


  25. Another post where I would be hesitant to comment, because all that there is to be said has been said...but I am here, and I pored over your every word, and the tears poured down my face. Tears for Hudson, tears for you, for Ed, tears for your sweet baby who will never meet such a wonderful big sister, tears for the injustice of it all. I lost my best friend back in high school (15 years ago), and lost another close friend about 2 months ago...both deaths were sudden and unforeseen, and just so wrong. A few weeks ago, I came across a quote that has made me smile when I think of it, and I hope it will mean something to you as well: "When someone you love becomes a memory, that memory becomes a treasure." Hudson is a precious, precious treasure Mandy...

    ...and "fuck" is right. Sometimes there's just no other word for it.

  26. Mandy,

    As others have said, thank you for sharing your thoughts will all of us. You are an amazing writer.

    Sometimes, the universe just sucks.


  27. Yes. the universe sucks bigtime.

    I hate for you that you have to regret how you spent those hours with Hudson, but I do want to remind you that this entire blog bears witness to the fact that you are an engaged, loving, attentive mother. The way you write about Hudson, I feel as though you were with her in every way that counted throughout her achingly short life. Those hours in the hospital when you were trying to rest did not exist in a vacuum.

    sending you love, as ever.

  28. I realize that during one of the toughest conversations I had with you that I mentioned googling "unexplained high fever in toddler" and bacterial meningitis came up. What I realize after reading this is that I googled "bacterial meningitis" and one of the symptoms is unexplained high fever; this of course was after reading your post confirming that the diagnosis was in. I don't know how I got that wrong, but so much about that time is a fog. I so wish it wasn't so. We miss Hudson so deeply. Love to you my friend...Renee P.

  29. Mandy I'm so so sorry. It is like reliving your wordt nightmare over and over again. I cant even imagine your pan. Even though your memories are fuzzy, im sure hudson's memories of her amazing parents were (and are) filled with happiness and love.that's what counts