Thursday, August 5, 2010

Can't Let Go

Well, we didn’t hear anything earth-shattering at our meeting with Dr. X and Dr. Y yesterday. They said pretty much exactly what I thought they would say, which is that no one can definitively know what would have happened if we’d taken Hudson to the ER 9 hours earlier. Dr. Y, the infectious disease specialist, said maybe, maybe if they’d started treatment for meningitis right away at that point, maybe it would have made a difference in the outcome, but both Dr. Y and Dr. X (the PICU doc) said they thought it was highly unlikely that anyone in the ER would have done that for Hudson at that time based on what they knew about how she had behaved the night before (she ate a big meal, seemed chipper, fever went down), and how she presented clinically later that morning at the pediatrician (normal white blood cell count, fever back down, still responsive, said bye-bye to the doctor and waved). Lumbar punctures have risks and given that Hudson was 17 months old (and therefore not in a high-risk group for meningitis) and probably looked like she just had a nasty virus, it’s unlikely that ER docs would have taken that step at that point, absent seeing some evidence of neurological involvement. Dr. X says that evidence must not have been there, because Hudson’s pediatrician did not notice anything like that later in the morning. This is one of the things that continues to torture me—Hudson had a droopy eye along with her fever the day before, and as the day and overnight went on, it actually got swollen. The pediatrician saw this, too, and thought it was just an eye infection of some sort, or just related to whatever infection was causing the fever. So the thing I keep hanging my hat on is maybe an ER doc at a children’s hospital would have seen Hudson’s eye and heard about the fever not responding to medication and been more suspicious—after all, they deal with those kinds of crazy things much more often. That said, I don’t blame the pediatrician at all, which does make you wonder how, then, I can blame myself (and indeed, someone commented to this effect before). [ADDED AFTER POSTING (and I'm doing this to remind myself of yet another important fact for when I read this again in the future:  It is also highly unlikely that Hudson's swollen eye was a neurological event, since it would only be "droopy" if swelling in her brain was already putting pressure on her brain stem-- her first CT at the ER showed no such thing, so the swollen eye was, in fact, probably just related to the sinus infection behind her right eye, and not evidence of "neurological involvement" at that point in time].

They also have no way of knowing when the infection actually spread into her cerebrospinal fluid (CSF)—Dr. Y said given the rapid progression of the infection, it was certainly possible that even if they’d done a spinal tap earlier in the day, it might have been clear at that time. They just don’t know. All they know is that at 9AM that morning, her white blood cell count was a very normal 6.5 (normal is between around 4.5 and 10.5) and by the time they took her blood, around 4PM that afternoon in the ER (after we waited almost 2 hours in the waiting room and triage), it had dropped to .87 (which is what a post-chemotherapy inpatient might exhibit—it is dangerously low). By the time they did the tap, which was not until around 6PM, 4 or so hours after we got to the ER, her CSF was already cloudy. Dr. Y said usually when they see cloudy CSF like that, it’s due to the patient’s white blood cells replicating rapidly to fight off the infection. In Hudson’s case, it was cloudy due to the bacteria itself replicating so rapidly. The infection just totally overwhelmed her little body, never even giving her immune system an opportunity to fight it off. No one, not the pediatrician, not the ER docs, and not even the PICU doc or the infectious disease doc, expected the outcome we got—they knew it was a nasty infection, but they do not understand why it progressed so quickly to the point that Hudson was basically brain dead 18 hours after she was diagnosed. Dr. Y said the only other cases he’s seen where an infection overwhelms the system like that is in patients who do not have a spleen (your spleen is one of the main infection-fighting organs in your body—it produces the white blood cells that make antibodies against bacteria and viruses). He said they don’t know whether Hudson had a spleen or not (we didn’t do an autopsy), but he had looked at her microscopic blood slides and those showed none of the signs they would normally see in a patient without a spleen. They ran a few other immunology tests on her while she was still alive, to see if she had any other immunosuppression issues that we were unaware of, but those all appeared normal (although given that her immune system was literally in a battle for Hudson’s life, those results may or may not be accurate). And anyway, kids with immune system problems usually end up in the ER long before they are 17 months old. So it really did just come down to the world’s worst luck—she was exposed to a strep pneumo bacteria strain that is not currently included in vaccinations (Hudson was vaccinated on schedule for everything, but current vaccines are effective against only about 10% of strep pneumo strains) and it behaved in a way that no one can really explain.

But like I said, we knew most of this already. I finally just came out and told them that the main thing I was hoping to hear (because I have just been beating myself up about it) was that we did everything right from beginning to end and that there’s nothing more we could have done. Dr. Y said, “Well, this case is the closest I could ever come to saying that.” Dr. X agreed, saying that if he could tell me something that definite, he would, and reiterating how unlikely it was that Hudson would have been tested and treated for meningitis at 5AM Monday morning.

But still I wonder. Still I want my goddamned second chance. Still I just want to rewind, take her to the ER as soon as her fever quit responding to the medication, and see what happens. In my mind’s eye, they see the droopy eye, see how sleepy she is, ask me if she’s had any leg pains, which I then remember that yes, it seemed like she had an hour before at home. They do a CT, see the sinus infection behind her right eye, and decide to do the spinal tap, because infections like that are often associated with meningitis in kids that age (which is what the ER docs told us later that day). Or they at least run a blood culture that shows she has an infection in her blood and that her white blood cell count is off the chart high (and went into free fall the rest of the morning, which is why it was in the “normal” range at 9AM). Either way, they start antibiotics immediately, killing off the relentless bacteria before it can progress to the point of no return. Hudson gets admitted to a general ward, where we have to entertain her for three weeks while she continues the IV antibiotics. At worst, she loses her hearing (which would have been awful, but I would have cut off my own ears if it meant she would be here with me today). And she comes home with us. And now she is gearing up for a new year at school and making me laugh every single day.

I think I realize now that no matter what they told me, my grief would still try to tell me differently, because I just want Hudson back so badly. Nothing they could say will ever change the fact that I want to be able to rewind so that I could at least know that I had done everything I possibly could. Of course, I know, too, that if we’d done that, and she had still died, I’d then be wondering why I didn’t take her to the ER on Sunday afternoon, when her temp spiked to 104, and so on, and so on, and so on.

There’s just no getting around it. Ed told me very gently yesterday, “Sweetie, I think you’re just going to have to find a way to let it go.” I know he’s right. And I really want to. Now if I can just figure out how.

17 comments:

  1. Mandy, Nina (our younger) spiked a fever of 103 on Tuesday. Not an outrageous fever, but pretty high for a 14-year-old.

    Leslie's and my main conversation at that point was whether it would be safe to let her go to try-outs for the high school field hockey team this morning.

    Leslie and I are, I think, responsible parents.

    My point is that I think you and Ed really, honestly, and truly did everything a responsible parent would do in the situation that confronted you. You really did.

    Keep loving and missing and grieving Hudson the way you're doing, Mandy; it's what has to be and what ought to be.

    But when the perseverations continue about what you could have done, might have done, should have done ... just try as best you can to greet those thoughts with the love we're all sending you, and gently tell them that they can safely be on their way. They hold no truth, and no answers.

    With much love and support -- Eric.

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  2. I'd been anxiously awaiting your post and am glad to hear that you sort-of heard what you wanted to hear. You were Hudson's guardian angel, Mandy. You were always there for her.

    It pains me to think of you being sent home from the pediatrician, of your wait to be seen in the ER, of the difficulty in diagnosing a potentially fatal illness and the risky test needed to confirm it.

    When the stakes are so high, I sure wish modern medicine could do better. I've never thought that about your mothering.

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  3. Mandy, I pray for you every day-- and my earnest and from-the-depths-of-my-being request is that you are able to do what Ed suggests you must. I know that we, as women, take on every occurance in our lives and the lives of those we love as somehow our responsibility. We second-guess everything that happens, because we are supposed to be able to do everything, fix everything, intuit everything before it even happens. From this comes this awful-- and so, so unfounded-- guilt, I think. I know if you forgive yourself then it means admitting, on every level, that Hudson is really, permanantly gone. And even now, months out, that is still so unthinkable. As long as you carry the guilt, you have something to tether to-- the "what if" of another possibility other than this too horrible reality. I know that we can't "tell" you to let go of it-- if only it were that easy. You DID do everything right-- you now have confirmation of that. I continue to hope, pray, beg that your heart can accept this.

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  4. Mandy, I, too, have been thinking of you non-stop since you posted about your meeting yesterday. It sounds like the doctors got as close to telling you what you wanted and needed to hear as they ever could or would.

    I have thought many times about how much guilt you are saddling yourself with over Hudson's death and prayed that the love and support of your friends and family would suffice to start chipping away at it. I know we would all carry pieces of it away for you if you would let go of it.

    That said, I want you to know that I understand your holding onto it....I, too, tend to hold on to things long after they cease to be productive, and I'm really terrible at letting go sometimes, in situations that are trivial as compared to yours. So I will hope and pray that you are able to heed Ed's wise words and find a way to let it go, and I understand how hard that work may be. You're very brave.

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  5. My son has an immune deficiency, so I see your story through a perspective that knows something of worrying about taking proper care of a child. I've spent plenty of nights worrying over his bed, hoping I've done all I can do for him. I feel certain that you did the absolute best you could do for Hudson.

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  6. Mandy, I remember taking Sophie to the doctor some weeks ago with a fever, panicked because Hudson had just passed away a few days before. The doctor, who I consider to be very conservative and attentive, brushed off my concerns about her temperature. "High fevers are common in kids." "Wait and see," she said. Sure enough the fever died down soon after. There is no way you would have been told anything else. What happened to Hudson was what you once called a lightning strike. You can't prepare for those, and by the time you see them coming they've already been and gone. One of the greatest tragedies about the human condition is that hindsight is 20/20. I hope that you learn not to let it torture you. You and Ed are some amazing people. Nicole

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  7. Kate Ackley ZellerAugust 5, 2010 at 3:01 PM

    Mandy, I have thought many, many times — and especially today reading this — about what I could do differently in order to get a different outcome if I ever were to find myself in a similar predicament. What could I learn from you? Was there a misstep along the way that I could avoid? I doubt this will bring you any comfort, but for what it’s worth, I can’t figure out what I would do differently. It scares me actually as I have said before how we are at the mercy of things out of our control. I’m sorry that you have to bear this guilt, but I know I would be doing the same thing. Grief isn’t logical. Mostly, I am sorry that you are without your Hudson.

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  8. If I might comment on a comment, I love the beauty and truth behind Eric's words and borrow them from him to reiterate to you:

    "But when the perseverations continue about what you could have done, might have done, should have done ... just try as best you can to greet those thoughts with the love we're all sending you, and gently tell them that they can safely be on their way. They hold no truth, and no answers."

    Thank you, Eric, for that wonderful sentiment.

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  9. In my limited experience it is very difficult to deal in absolutes when you are talking about medicine and how the human body operates. Like they said, the treatment should have worked at the time they administered it, but it didn't because either the infection was too aggressive or Hudson had an abnormal immune reaction for whatever reason. There were so many factors outside your control that you will never know what would have happened had you taken her to the ER 9 hours earlier. The point is we are talking about 9 hours, not even a full day.

    Accepting there wasn't anything you could have done differently to save Hudson is scary in many ways. Scary when we think about those who we love and will love in the future. We want to be able to protect our loved ones through our vigilence, and maybe it's easier to feel like you have control and could have done something than to admit you don't have control. Maybe it's part of that magical thinking that if you knew you could have saved Hudson by taking her to the ER at 4am, now all you need to do is invent a time machine and you can have her back. Who knows why it's so hard to let go, but it is and I can only hope that writing about it and receiving reassurance from others will eventually help you to let it go a little at a time.

    Parents blame themselves, it's just what they do. Whenever anything bad happens to kids whether it is touching a hot pot, falling down and scraping a knee, or something more serious, it always seems parents feel guilty because there was something we could have done to prevent the injury or to at least mitigate it. When my son falls down and gets a bad scrape, I silently curse myself for allowing him to wear those darn crocs again (even though those are the only shoes he likes to wear) because he falls down more when he is wearing crocs than his shoes or sandals. It is a parent's nature to try to protect kids from every danger and hurt possible.

    Someday I hope you can come to accept that you did everything that was reasonable and you did your best to protect Hudson, but this was just a really awful thing that happened. Someday I hope you can forgive yourself for not being able to save Hudson. You are a mommy, not a superhero, no matter what Hudson may have thought about the matter.

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  10. Mandy, I don't really know what to say but I was hoping that your meeting with X and Y went well. I think the idea of letting go is an interesting one. I have found that I can't think or persuade myself into letting go. I can't force it but instead letting go just happens. I know that there will be a moment for you when letting go happens. You should never let go of the love and concern and flawless mothering you gave to Hudson but you could hope to let go of the pain and the what if's. I think the Doctor's saying “Well, this case is the closest I could ever come to saying that.” is one good thing. Lovingly, Alex K

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  11. I don't know you, but my heart has broken for you many times over as I have read your blog. I am so very sorry for your loss and I wish that Hudson could be returned to you. I have a young son and it is super scary that things like this happen and are completely random and out of our control. Like everyone here has already said, you really did everything you could do for Hudson. No one, not even the pediatrician, thought that there was something so serious going on with Hudson. Your love for her radiates through your words and I can tell that she was very lucky to have you as her Mom. Thank you for sharing. You have an amazing way with words.

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  12. Mandy you can only be referred to as the perfect mom- this sucks so bad and I cry with you every time I read your postings. But it makes me cry even more to think in the midst of your grief you have to run through these hours questioning everything you did. I continue to pray for your and Ed and I will pray extra hard that you will eventually be able to fully realize you did everything in your power for your little girl.

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  13. Mandy--I went to bed last night right after reading this post, and before falling asleep, I repeated to myself over again and again--bring her peace, bring her peace. I hope you rested peacefully last night, and that your meeting at the hospital does give you a small bit of closure. Sending love-
    Christine Mayhew

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  14. Mandy,
    My dear friend Lauren lost her 18-month old daughter Paige 11 years ago to a bacterial infection in a situation strikingly similar to yours. Her husband took their daughter to the pediatrician for an ear infection and came home with her. When he went to wake her from her nap she was unconscious and couldn't be revived by the EMT. She had an aggressive staph infection that went undetected because like Hudson she didn't appear that sick.

    Lauren just posted on my blog today. She has two sons older than her daughter Paige and a year after Paige died had twin sons. Two years ago to her surprise and delight she had her daughter Lainie. Lauren's comment reads, "it took the birth of Lainie for me to go through Paige’s clothes as i had a visual of her[Paige] in each and every one of them. I made a quilt of Paige’s clothes (baby throw up and all) for Lainie so she would have a piece of her older sister with her forever. She sleeps with it every night and i get to see and remember Paige every night when i tuck her in…."

    My friends who have lost children and have been on this journey longer than I have promised me, promised me that I will feel real joy again. The reluctance I had accepting their promise has changed to hope.

    Mandy I offer that same promise to you. You will feel real joy again. Feel what you're feeling and know you're not alone.
    Jackie

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  15. I can't stop thinking about this post, which I read the day you posted it. I imagine that all parents who have a child die go through this to some extent - if it was a car accident, wouldn't the mom think, "what if I'd gone a different route or used a different carseat or not been speeding a little?" Even with something like leukemia, I would imagine there is wondering about what if we'd done some other treatment, gone to a different doctor, etc. The thing that strikes me in all of my thinking about this is how many parents lose children and really could have done more to prevent it. You are not one of those parents, IMO, but I have a friend whose friend recently lost their almost-three-year-old son. They were at a relative's house for a family get-together and everyone was hanging out in the front yard, with the cousins and everyone, and their son walked off without anyone noticing and went in the backyard and had drowned in the pool by the time they looked for him, which I don't think it was a long time before they noticed he was gone. This awful story struck me at my core b/c I know there have been many times when I lost sight of one of my kids for a couple of minutes, especially in group situations where I think someone else is watching. I think about how awful this little boy's parents, and his relatives must feel, b/c obviously it could have been prevented. But do I think they are negligent? No - he was almost three, not one. And there was no immediate danger present where they were gathered. I do not think it is their fault, even though they could have prevented it. Of course, I do not think that you could have prevented what happened to Hudson in the same way that they could have, but I guess I'm wondering if it's really any worse for them - are they completely consumed with guilt, or is it the grief that is the worst part? And what relationship does the guilt have to the grief? I realize this is all emotional and not intellectual, but I just keep thinking about this - about how much difference (or not) it would make in dealing with grief over a child if the parent actually could have prevented the death. I'm not at all saying you have it better off than those folks, it's not a contest, but I just wonder what it means and if it is helpful to think about.

    Susan H.

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  16. Mandy, you don't know me, but I grew up with Ed's college roommate and met him a few times at Carolina. I have been reading your blog with tears in my eyes for a few weeks now, and wondering if there would ever be a way I could offer you any meaningful words of comfort; hearing about Hudson through Scott, and how her life and death affected you and Ed, has changed me as a parent in so many ways. I want to thank you for sharing your amazing little girl with those of us who were never fortunate enough to meet her, because she has changed us for the better.

    I wanted to comment on this particular post, though. I'm a nurse, and I used to work in a PICU, years before I had children. I saw the lightning strike cases first-hand. To be sure, I saw tragic outcomes that could have been avoided, but I definitely saw children die when their parents did absolutely everything right.

    From everything you've said, I'm certain you did everything right- and I would have done things exactly the way you guys did them. A couple of weeks ago, my 10 month old daughter spiked a fever of 103, and I *knew* I would be told to wait it out- so I gave her motrin and waited it out.

    My son, who is 3, has a number of developmental and medical special needs, including epilepsy. I find myself facing the question of whether to take him to the ER on a regular basis, and even though I have the professional training AND personal experience with his multitude of medical issues, I never know if I'm making the right decision. I never will. And when I call our specialists for advice, THEY often don't know, and leave the decision to me.

    I don't know if there can be any comfort in the words of a stranger, but I wanted you to know that I truly believe- both as a pediatric nurse, and as a mother- you did everything right.

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  17. There is only one truth. We all know it. And, you know it but can't accept it right now. Someday. I love you.

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