Wednesday, July 27, 2011

An Ounce of Prevention

Jackson got his first big shots today: Pentacel and Prevnar. The Pentacel vaccinates against Hib, DTaP and polio. Prevnar protects against invasive pneumococcal disease (IPD) caused by streptococcus pneumonia bacteria. This is the bacteria that took Hudson’s life.

I know many people have wondered whether Hudson was vaccinated. The answer, if you are one of those, is yes: she was fully vaccinated and totally on schedule. She had received all the scheduled doses of Prevnar when she died. At the time, Prevnar covered 7 strains of s. pneumo bacteria. In the months just prior to and after her death, the vaccine expanded to include another 6 strains. And there are more than 90 different strains of the bacteria—it is one of the most common bacteria in the world, colonizing in all of our noses and throats regularly. A small number of these strains are known to cause most IPD, so these are the ones the vaccines focus on. I am under the impression (because I can’t remember an exact conversation) that the strain that killed Hudson was not included in either the Prevnar7 or the Prevnar13.

I remember very well when Hudson got the Prevnar vaccine—the nurse told me it was the one that usually stung the most, and this always proved to be true each time she got a dose. I remember the first time she got it, at two months, her face screwed up into an angry cry and turned bright red and it took her several seconds before she exhaled with a giant scream. It was awful to watch and I felt so sorry for her.

I have never opposed vaccinations and never even considered not vaccinating my children, but given our experience with Hudson, I became militant about vaccinations. Even though the Prevnar vaccine didn’t save Hudson, it wasn’t because it was ineffective—it was just incomplete and imperfect. The strains it did protect her against were the ones that most commonly cause serious disease, so certainly it was doing the job it was intended to do, since she never got any other major illness except an ear infection or two.

There was no question that we would get Jackson vaccinated, fully and on schedule. And true to form, he screamed a lot harder from the sting of the Prevnar than from the Pentacel.

But this post isn’t actually about vaccines. It’s about my old nemesis, the what-if monster. Yes, again.

By getting Hudson vaccinated (and breastfeeding and washing my hands incessantly and feeding her healthy food and so on and so on), I thought I was doing everything I could do to keep her safe from serious infectious diseases. I never imagined I’d be in a position to try and prevent her from dying from one.

Recently, several different friends have posted on Facebook about their kids having high fevers like Hudson did, and taking them to the emergency room or urgent care when those fevers hit 104 degrees. And I didn’t. I thought about it, but I didn’t. So I’m thinking again about why I didn’t. Why did I react differently?

What follows is the very first thing I ever wrote after Hudson died. I wrote it about 10 days later, after both memorial services and after Ed and I had left town to get away for a few days down in Belhaven, where we were married. I started writing about exactly how everything went down with Hudson that fateful weekend, my brain trying its best to process it and figure out how and when all hell broke loose.

In the early morning on Mother’s Day, May 9, 2010, Hudson woke up screaming. It was around 1 or 2AM and she was at full bloody-murder pitch. She had been fussing off and on throughout the day, a little bit clingy– we thought maybe she had some molars coming in. She had been sucking her thumb a lot lately, at times other than to go to sleep, which was her norm, and her thumb was always at the back of her mouth– hence, the molar theory. Saturday morning, I had taken her to her first music class. We had missed the previous two because we were out of town for the first one and then had the start time wrong for the second one. After the music class, I realized I was fairly close to the Value Village thrift store– I had been looking for some sturdy closed-toe sandals for her to wear to school, so I headed over there before going home. Didn’t find anything at Value Village, but saw a CVS next door and decided I should finally get around to buying some non-recalled baby Tylenol. Pretty much all but the CVS brand had been recalled, so that’s what I bought.

So even before she went to bed on Saturday, I had considered giving her some Tylenol just because she’d been so fussy and I figured those molars were just bothering her. But I didn’t– she went down like usual, I think, but then roused a couple of times between then and when she woke up for good, just fussing. Ed and I talked about whether we should get her up and give her some Tylenol, but she went back to sleep on her own each time. But when she started screaming, I knew something else was wrong. I went into her room immediately and was relieved to find that the poor thing had finally just gotten her chubby, precious little leg stuck between the crib bars and she had woken up and couldn’t move. Every time I tried to extricate her, she would scream some more. So Ed came in and we turned the lights on. Poor Hudson was still wearing her winter pajamas– these were white fleece with blue snowflakes on them. We hadn’t gotten around to buying any summerweight ones, but figured we kept the house pretty cold and didn’t put any blankets in her crib, so she was probably fine. But the extra fleece did not make leg extraction any easier. Finally I realized that I just needed to straighten her angle a little bit and once I got her body more perpendicular to the bed, her leg slid right out. I changed her diaper– it was pretty loose stool, but nothing I worried about– and her little knee was fiery red. I could tell she had probably been stuck that way for a while and wondered if the first few times she had woken up, she was already stuck but just not awake enough to fuss much. So THEN I gave her some Tylenol, figuring her knee was probably pretty bruised and sore and I wanted to make it feel better. She curled up on my shoulder like she always did at bedtime and we sang our song (“Hark the Sound”)– I can’t remember if she giggled at the “Don’t Go to Dook” part– probably not, since she was so sleepy. But I put her back down and she went right on back to sleep. I did not realize that the next time she woke up would be the beginning of the end of her life.

About an hour later, she woke up crying again, and I couldn’t imagine that she’d gotten her leg stuck again. And I was right. Instead, she was absolutely burning up inside her jammies. She had never been a kid to run much fever, even with ear infections, but her little body was just radiating heat. I took her temp and it was about 101.5. Again, about as high as her temp had ever been, but still not a really high fever for a toddler. But given that I had just given her some Tylenol for another reason about an hour before, the fever still concerned me a good deal. I couldn’t give her anymore medicine for a while, so we just stripped her down and laid her in the bed with us and she went back to sleep. I can’t really remember the rest of that night (I remember the next night very well, still), but I know I gave her some more medicine as soon as I could– I never took her temp soon after giving her the Tylenol. Maybe I should have. But she seemed to perk up for a little bit each time, so it seemed like it was working. But she spent most of Mother’s Day pretty much stuck to me. We tried to get her to lay down for a nap or two since she’d been up so much, and she would lay down for a little bit, and then start to fuss, so I got her out of bed and just let her sleep on my chest while I watched TV. We spent a fair portion of that day like that– in retrospect, once we realized her illness would claim her life, I was so very grateful for those days of being so close to her. Somewhere around lunch time I took her temp again and it was up over 102. She was still eating and drinking, but that temp was pretty high to me, and her right eye looked ever-so- slightly swollen, more just a very, very slight droop actually, so I decided it was time to call the pediatrician. She didn’t call back for close to an hour, and I talked with her about Hudson’s symptoms. She asked questions, most importantly whether the fever was responding to the medicine– I said that even though I hadn’t kept taking Hudson’s temp after giving her the medicine, she did seem to perk some each time. She asked whether Hudson had any other symptoms, and the only thing I knew of was a very mild runny nose– but again, it was nothing compared to some colds/URIs Hudson had had in the past. Then there was her eye. The doctor asked questions about it, mostly whether there was any goop oozing out of it– Hudson had already had pink eye three times that year, so we knew what pink eye looked like. This was not it. The doctor said she didn’t think we needed to go to the ER– she said even if Hudson’s temperature was 104, we wouldn’t need to go to the ER as long as it was responding to medication.

Well, I remembered what she had said when later in the afternoon, Hudson’s fever spiked to 104. It was too early to give her any more Tylenol, but that temperature scared me to death. I called Jessica first to ask her what I should do and she wasn’t home, so I left a message. Then I called my sister– since she had raised nine kids, I figured she’d seen plenty of high fevers and would know what to do. She said that I should put Hudson into a lukewarm bath to cool her down, and that that’s what they’d probably do to her at the ER, or worse, they’d put her into a tub of ice. But she said I knew my own kid and if I thought we should go to the ER, then I should take her to the ER.

I will remember the decision I made next for the rest of my life, even though I know, based on what we learned later, it’s 99% likely that had we gone to the ER on Sunday afternoon, they would have sent us home and we’d have ended up right back where we did the next day, anyway. Except having been sent home once, I guess it’s possible I would have been reluctant to even go back on Monday, although at that point, we were worried about Hudson refusing to eat or drink and were mostly trying to get some fluids in her.

So instead of going to the ER, I drew a lukewarm bath. Hudson generally loves the bath, so I figured this was probably a good plan. She wasn’t crazy about the colder water, but she got used to it and eventually started playing and splashing like she usually would. While she was in the bath, Jessica called and we talked a bit– she told me (I think my sister had said this, too) that if we had some Motrin, we could alternate the Tylenol and the Motrin on a shorter timeframe, every three hours, rather than 4-6 for Tylenol and 6-8 for Motrin. She also said that the fact that Hudson’s eye was slightly swollen made her even more comfortable that this was some kind of infection in her sinuses or ear/nose/throat, because kids often get associated eye infections with those.

We didn’t have any Motrin, so as soon as Hudson was out of the bath, we took a walk to CVS with her in the stroller and Bess alongside. Hudson loved to be outside– she had just learned that word in the last week– and had a ball identifying and pointing to all the new words she was learning– airplane, helicopter, rock, car, bus, truck, ant, bee, flower... so many words. So she enjoyed the walk– she seemed in much better spirits. We had no idea it was the last walk we’d ever take with her. Though we are never given the chance to do this when someone we love dies suddenly, I wish I’d appreciated it more, remembered every moment, every word she said, everything she pointed to. We bought some Motrin, again the non-recalled CVS brand, and headed back home. I gave her a dose and within a short time, her temp was all the way down to 100.4. She ate a big meal– I think we had taco salad that night, so she was scarfing the rice and meat and avocado. With such a big appetite and her temp back down so low, I figured we’d turned a corner and were heading back into well-baby territory. She went to sleep easily, which was no wonder after her ordeal the night before. Ed and I both breathed a little easier.

Except that at 11 that night, she woke up again. Her fever was back up to 102, so we dosed her and kept her in the bed with us for a bit. She perked up immediately, to the point that she was sitting up in the bed trying to chat with us. It was almost midnight at this point and we all needed our sleep, so I went and put her back down in the crib. She went right to sleep without a problem. But she was up again at 2. Fever was back up to 102. We dosed her again with the alternate medicine, her fever went down a touch, and we put her back down. At 3 she woke again, with the fever raring back up to 103. Since I had just given her the fever medicine at 2, I couldn’t give her anymore. We brought her in the bed with us and turned the light on– every time I touched her, she screamed. We figured she was just exhausted and tired of being messed with– one or the other of us had had our hand on her forehead and cheeks pretty much constantly for about 24 hours. She had had enough of it, so we thought. I thought again about going to the ER, but at this point, it was 3 in the morning, and the doctor’s office would open 4 hours later. I figured if I could get the fever back down somehow, then we could wait it out. It’s another decision I’ll question for as long as I live– although all indications appear that they still would not have made much of the illness at 4AM on Monday morning, I will still never be able to know that for sure, or whether starting the course of IV antibiotics 12 hours earlier would have saved her life. This knowledge, or lack of it, nearly cripples me sometimes. Even though I know it is not my fault, I still wish I could just rewind and do it differently, just to see if it could have made a difference, and we could have returned to our old, amazing life with our amazing little girl. Although I imagine not a day will go by for as long as I live that I don’t think about this, I can only hope that one day, I will be able to let go of it. I know there is no point, but it is still hard not to consider.

So I put her back into the lukewarm bath– she protested at first, and each time I cupped some cool water and splashed it over her, but she was generally nonresponsive, and just leaned her head over onto my shoulder with her eyes closed as if to say, “Mommy, I just want to go to sleep.” I asked her if she wanted any of her toys, and she said, “No” to each one. That’s the point at which I really wish I had listened to my mommy instinct– I knew that something was very wrong, but I just didn’t know what. Kids run high fevers all the time, I knew, but my kid usually didn’t. Why, why didn’t I listen?

We kept her in the bed with us after that– the fever did come down, but I think it was back up to 102.7 by 6AM or so. I waited until 7 on the nose to call the pediatrician and she said we could come in at 8. So we got Hudson dressed and tried to feed her breakfast. She took two bites of yogurt and refused anything else. We went to the pediatrician’s office and our poor girl was just not herself. She barely made a fuss when the nurse came in, although she did cry at least a little bit. When the doctor came in, her first comment was “She is SICK,” because little Hudson was laid out in my arms with her head all the way back and was not bothering to sit herself up or get more comfortable. The doctor looked her over, looked in her ears, which were perfect (this startled me– I had been hoping all of this would be linked to an ear infection and we could get out of there), the whole nine yards, and nothing.

My account stops Monday morning, halfway through the pediatrician visit. After I had gotten that far, I remember posting on Facebook something like this: “Mandy is finally writing. And it is even more painful than I thought it would be.” It was so horribly painful because writing down every moment of that weekend only highlighted each and every opportunity where I could have made a different choice that might, just might, have saved Hudson’s life. It’s not just about the decision not to go to the ER at 4AM. It’s also about why I didn’t take her to the ER when the fever first spiked to 104 on Sunday. Or why I didn’t at least call the pediatrician back and ask what to do. Why, when the fever spiked up a degree and a half only an hour after I gave her medicine, I didn’t at least call the pediatrician and ask what to do. Maybe she’d have said to get our asses to the ER. Or why, if I didn’t call the pediatrician, I didn’t at least look in my “Portable Pediatrician” book, where the section about fever says plain as day that the fever is not the concern—it’s what’s causing the fever that you should really be worried about.

I have never shared the above with anyone. I’m not even sure Ed knows I ever wrote it. I saved in its own separate document and I have only read it twice, once some time ago and once again today. When I first wrote on the blog last summer about these fateful decisions, I didn’t give this kind of play-by-play. I hit the highlights, and everyone told me that they would have done the same thing I had. And I just kept thinking, “Well, they just don’t know the whole story. They don’t know all the different places where I could have, SHOULD have, made a different choice. If they really knew the whole thing, they would be wondering what in the hell was I thinking.” Maybe so. Maybe not.

But I’m not writing this to have you all reassure me again that I did everything I could do. Really, I’m not. I know now that no amount of that is ever going to make this go away entirely. And believe me, it has gotten better—I am not plagued by this in the same way as I used to be. It’s just that sometimes certain things trigger it (like vaccinations or hearing about high fevers) and I have no choice but to go through it all again. Jess tells me that she does the same thing with her mom’s illness and death—sometimes she just has to let herself go back through every moment, every phone call, every decision point, again. Even though it can never change the outcome, I think telling the story over and over is just part of a process I have to go through, part and parcel of the grief.

It sucks. I can’t even describe how much it sucks. But I have accepted that it is just part of the process. A process whose purpose is to help me one day accept that no matter what I do, there are some things I will be unable to prevent.

No matter how hard I try or how much I wish, I can’t vaccinate Jackson against the entire world. Oh, that such a vaccine existed.


  1. Oh, Mandy. There's nothing new to say, but I want you to know I'm listening, witnessing, here. Love to you.

  2. Mandy: one thing to try and remember, and I know it will be of little to absolutely no comfort, but I firmly believe that many, if not most, of your friends take their children to the ER because we think of Hudson, and think of a situation NO parent would normally think, worry about, or anticipate. So do not assume that another parent would have done anything differently...I for one would not have. If anything I probably would have hesitated longer before going to the er...


  3. Mandy, I wish I could hunt down and permanently extract the what if monster from your life, but I understand that it will always be there, just as mine is, and recognize the amazing work you are doing at confronting the beast when it does rage. You are really doing amazing work.

    I too wrote a blow by blow detailed account of the day before Naveen's and can pinpoint many decisions I could have made that might have saved his life. I wish it all were like a video game where we could go back and start again trying a different strategy armed with new knowledge. It sucks that we can't.

    I want you to know that when I read this post and pretty much everything you write about the incredible love are care you have given and continue to give to both your children, I always find myself thinking if/when I get to parent a living child, I hope I can do it with even half the courage and love and strength that you do. When I read this passage, it's the story of how you did everything right and in most caring, loving, and compassionate way imaginable and still the universe cruelly took your beautiful little girl from you. There is simply no logic in it.

    I wish you could vaccinate Jackson against the world too, but, since you can't, I'm glad he has you. He's a very lucky boy. Love to you, mama. -Stacey

  4. I've come to believe there are certain things we just don't-- or can't-- know. This was one of them. There is just no way you could have known how ill she was. When my uncle got meningitis as an infant, the doctor told my grandma it was because she'd taken him on a public bus. She was tormented by that for a long time because, if true, that meant she could have prevented it. But how could she have known? (And how the hell could a doctor know that? I can't believe he would even speculate.) She has now made some peace with the fact that there was no way she could have prevented his illness, and no way to have lessened the effects. It just happened. There was nothing anybody could do.

    I'm so very sorry, Mandy. I cannot imagine how hard it is to wonder if things could have turned out differently. My heart aches for you. Sending love.

  5. I think what's most chilling about this timeline is how this cruel illness started so quietly and gave off so many mixed signals, enough even to fool Hudson's doctor. I just hope some smart minds can find a way to diagnose this pernicious disease early and treat it more effectively. God bless you and all the parents who've suffered so grievously because of it.

  6. Our pediatrician told us that our Diana had a strain of the HIB bacteria that was so nasty the only way she could have survived it would have been for them to pump her full of antibiotics 24 hours before she showed any signs of being sick. Reading your account of Hudson's illness told me that you certainly did act as soon as she showed any signs of something really serious (more than the 104 fever, which my subsequent child had more times than I can count). At some point I made a conscious decision to let the coulda, shoulda, wouldas go. I hope you'll be able to as well. In the meantime, I send you a big hug and the assurance that someone who has stood in your shoes is praying for you.

  7. Mandy,

    While I know you are not asking for reassurance, I want you to know that each and every time I read anything you write, I am in awe of the amazing way you were/are in touch with your children. Would that we could KNOW exactly what is happening and, even more, would that we could prevent all terrible things from happening. At each moment, you were acting, listening, feeling, responding, as an amazing mama.

    As others have written, when my kids get sick, I think of Hudson. But, mostly, I feel deeply aware that there are no guarantees... I could make the choice to take them to the doctor and get in an accident on the way there... You are such an amazing, caring, loving, thoughtful mom, and Hudson such a beautiful spirit that I am reminded that there is no rhyme or reason to some things in life. And, all I can do is love those I love with all I am... and, you are such a beautiful example of that.

    Thinking of you,
    Rachel C.

  8. I just found your blog through Glow In The Woods... My son died at 8 days old from Bacterial Meningitis this past January (his was from Ecoli).

    The what ifs are the most terrifying and emotionally disturbing parts for me to reflect upon. :(

  9. I was just finishing up posting a long "reassuring" comment, but deleted it knowing there was no "you did everything possible..." that could make you feel better. Just know that you (and your sweet Hudson) have touched the lives of so many people. Your love for your children is evident and very powerful, and it inspires me to be a better parent every single day. Even times like at the end of the day when I'm tired and am ready for the bath and the "bedtime routine" to be over so I can relax, I think about you and Hudson- how much she loved her bath and how much you cherished that part of your day. And it makes me snap out of it and strive to be present and engaged instead of just going through the motions. So I thank you for that. And I continue to think about and pray for your family often.

  10. What if. . . Hudson was still here with us - there would be no One Good Thing blog; Hundreds of people would not have heard your story; Those same hundreds would not have been so encouraged by your words, which I believe are helping more people than you know. We are all sent here for a reason. So many good things have come from Hudson's short time here. I hope you will soon be able to accept what you should never have had to go through, and feel alive in all the "one good thing" events that have come from it. Peace to you!

  11. "Oh, that such a vaccine existed."
    This post gives me such chills - every parent has had that sick child and there is no doubt whatsoever that the vast majority have not been as vigilant as you in caring for their sick children. You knew EVERY beat and pulse of Hudson's temps and behavior and sleep... and yet still... unfathomable.
    Emma had one of those unexplained high fevers recently and it was all I could do to keep my heart from jumping out of my chest as she snoozed listlessly on my shoulder. When we finally got to the doctors' office and Dr. W ruled out everything she could think of, I looked her straight in the eye and finally told her that Emma and Hudson had been in the same class in day care, and that, because of that, "I just don't know anything anymore." That's as close to the truth as I can get when it comes to Hudson's illness. We ache for her radiant life cut short as our love grows for her beautiful little brother and the life he's breathed back into our collective darkness.

  12. Hugs from me as always,

  13. Life as a mother is fraught with breaks my heart that some mothers will have to endure that guilt without their children there to reassure them that they made the best decisions possible. We all know that you made the best decisions you could with the information that you had, and I think as mothers (and human beings) we would all collectively agree that we would have done much the same. But it is so much easier for us to tell you that than it is for you to hold onto that idea and go with it. I am so sorry for that.

  14. Reading this I am struck by how much love Hudson was surrounded by those last few days. I hope you, on some level, realize that she must have know how very loved she was even in the midst of her illness. Remember when you read about friends going to the ER, many of them are going solely b/c you shared Hudson's story-- a few months back my son had a sudden high fever and lethargy, so we brought him to the ER mainly because I had read your blog; I would not have otherwise gone. It ended up being nothing, but had it been important to go, it would have been you and Hudson who were responsible for the early intervention. Just another way her legacy lives on because of your strength in sharing her story.

  15. Oh sweet Mama, I am so, so sorry that you have to carry on without your beautiful girl. She was so loved and cared for by you and her Daddy, all she knew from you was love and care and comfort. You did everything for your girl that you could have done - I pray that one day you will know that too.

  16. I hate those feelings of what if I had just done x, y, or z differently. They will haunt me for the rest of my life even though I know even had we done something differently there would never have been any guarantees that George would have lived.

    As for vaccinations, my daughter will be getting all of hers on schedule. Absolutely. And like you said, nothing can protect our children from the entire world, but oh that there was a vaccine for that...

  17. Thank you for sharing this. I absolutely understand the need to tell the story, over and over, in different ways. I think as well that it is a part of grief. A way for our minds to sort through the impossible.
    You know the world (well, at least me and every other person who reads your blog) thinks you are an amazing mother, perfect in every way for Hudson and Jackson.
    I hope the memories becomes sweeter and rest assured, NO ONE is wondering "what the hell you were thinking." We all know you and your husband were thinking of Hudson, and taking the absolute best care of her that you could, that anybody could.
    Sending you lots of love.