Recovering emotionally from an ill child in the hospital
January 5, 2016 4:03 AM   Subscribe

My 15 month old was seriously ill and admitted to the hospital through the ER. I am having trouble breathing through the anxiety and fear. Do you have any experience/advice beyond or in addition to therapy?

My 15 month old was admitted to the hospital through the ER with multiple serious lung infection issues during the end of the year. His blood oxygen was dropping and the medical team held an emergency meeting - transferring him to a children's hospital PICU was on the table because his condition was serious. Thankfully he recovered but I am having a difficult time healing myself. I feel down, anxious, and exhausted. I am wondering if other people who have gone through this or something similar have advice on how to move forward and help my healing process? I think I will be scared for a good period of time if he gets a cold/sick that this will reoccur. I feel far from myself right now. My partner and I were separated during the time because we have twins and so we each paired up with one kid, in/out of the hospital, which made it hard for us to support each other emotionally - we were in "go adrenaline" mode to survive. I know that therapy could be helpful. I am looking for additional/other resources and ideas. Thanks so much.
posted by anonymous to Health & Fitness (14 answers total) 1 user marked this as a favorite
This was LAST MONTH? Cut yourself some emotional slack and take more naps. Something like that is really traumatic! I think it took me a year to recover from my similarly-aged-child's trip to the ER after he quit breathing. It helped me to tell the story a LOT of times, which drained off some of its power to make me panic and made it more routine. It also helped to think about how fucking lucky I was to live in a time and place with 911 and ambulances and ERs and pediatric emergency doctors ... the thing that happened was scary, but the system in place to help worked. I could relax a little because if I needed it, the system would be there to help the next time.

Finally, having something concrete to focus on helped; for me, this was getting CPR certified so that I'd be better able to cope with the crisis next time, or to help someone else. For you ... I don't know, does the PICU need comfort item donations you could gather? Do you knit, could you make blankets? Or is there a parenting forum you frequent where you can answer questions from parents with hospitalizations pending and help them be more comfortable? Something to make you feel like you are taking direct action, and you are not just at the mercy of events. You can't stop kids from getting colds, but finding something adjacent to the experience to focus on and take action about may help you regain a sense of control and agency.
posted by Eyebrows McGee at 4:40 AM on January 5, 2016 [21 favorites]

I'm sorry, and 15 month old twins are a hard challenge to boot because they are entering the heart-stopping exploring the world stage. And twins!

I have been there with my eldest son who ended up in emergency surgery for appendicitis, had a seizure, PICU, etc. It is truly okay to be having reactions, but don't hesitate if you are still suffering a lot in a few month to being medical "team you" on board. That said, some strategies:

If your circumstances allow, try to get help (friends, family, babysitters) so that you can have some time off parenting even if you are finding that anxiety-producing. For me, two yoga classes a week where all I had to do was get there and then someone helped me breathe, made a vast difference. It's being able to "do you" rather than mom, I think.

Also, if you can, bundle those guys up and go for walks to spend some of the adrenaline. If not, ehn.

Also if you can, I highly recommend watching or reading as much comedy as you can, light hearted things that make you laugh. Ease up on any chores or obligations you can, get sleep when you can, eat comforting things. If you were 4, like my little guy was, you wouldn't expect your child to get over this trauma so fast, and you might make a cosy nest, read favourite books, ease up. As a parent of 15 month old twins you are a new parent of twins and this was terrifying.

On the topic of every cold and sniffle...I've lost a child, and had this experience with my next. I am direct with medical teams if I need to be, like "could you please talk to me about why you are sure this pain isn't an adhesion, because otherwise it will bother me, because I've had the experience of loss." I have never had a dismissive response even from the lousy walk-in clinic. Doctors and nurses can be really understanding. I give you permission to go in to see a doctor or er as many times as you need for the next 2 years or more.

I also agree that a CPR class might help.

It is really okay to feel all the feels here.
posted by warriorqueen at 5:57 AM on January 5, 2016 [6 favorites]

This was LAST MONTH? Cut yourself some emotional slack and take more naps. Something like that is really traumatic!

This. In spades. I think I broke my mouse favoriting Eyebrows. My 3 year old gashed her forehead open tripping over her own feet while we were on holiday at the beach this summer, followed by a return trip to the ER later that night when she started projectile vomiting. The three days and battery of tests that eventually ruled out head trauma/ruled in the latest gastro bug was the tiredest I have ever been outside of the 72 hours of labour it took to bring her into this world.

Hubs took care of our other daughter as much as possible, but at the time she was 7 months old and just starting solids, so like you, we tried to switch off as needed. Confirmation of the gastro bug came in the form of me starting to puke out my guts, followed by Hubs also puking out his guts.

It sucked. We are the only people I know who came back from the beach paler than when we left.

So yes, cut yourself some MAJOR slack, because it will take a goodly chunk of time to just physically recover. Mentally I can tell you it gets better with time and said physical recovery, but I still have to force myself to breathe through my mouth when she's being a typical three year old (at the playground, jumping on the bed, running, etc.)
posted by romakimmy at 5:58 AM on January 5, 2016 [2 favorites]

I am a worry wart. Big time. Doctors said not to tell anyone I was pregnant because they didn't expect it to last. When I did deliver (after a stressful up and down 7 months) it was a 5 hour surgery touch and go nightmare. Then add another couple years of health drama the first couple years of his life. I think it has made me even more likely to worry.
If there wasn't modern medicine there is a 100% likelihood my child and I wouldn't have survived.

When I worry now about his health (which I do often) I focus how lucky I am to have modern medicine. It was pretty likely for people of my great grandparents generation to lose a child (and every generation before). As a genealogist I know children died SO often with diseases like measles, diarrhea, scarlet fever. When I look at a page of deaths from about 100 years ago often more than half of the deaths are kids 6 and under. It just doesn't happen anymore. 2016 is an amazing, amazing time when it comes to medical care. If parents before me could handle parenthood (when every fever might mean death and having no where to turn for real care) I can handle it! I am a descendant of brave and resilient women - if they can do it with such terrible odds so can I !

I just focus on how relatively easy things are now and how lucky I am to have a hospital with teams of highly competent doctors whose sole focus is keeping kids healthy.
posted by ReluctantViking at 6:58 AM on January 5, 2016 [1 favorite]

Our baby was taken to hospital when he was a month old, he had a huge infection that came out of nowhere. He was in there for a week. Eventually we were able to leave it in the past and stop worrying about every little sniffle or cry.... It took about 2 months.
posted by catspajammies at 7:17 AM on January 5, 2016

I would say it takes about twice as long to calm down and if the child is still vulnerable, your jangling nerves are a good thing because they serve to keep you alert to any signs of distress early. You can't do regular stuff and have a high-need child at the same time - something has to give, and it shouldn't be sleep or family time with your children. Make it a hobby or overtime at work or something else you can postpone for six months so you can focus on caring for your children and yourself for now.

I make an effort to make hospital visits pleasant. I add coffee and cake trips, buy indulgent magazines, listen to favourite tunes, take a cab there, eat french fries etc. If I have the kids, I will buy them colouring pencils or candy, go to the fountain to hang out - what it takes to make the hospital more than just a medical visit in my head. Tie something pleasant onto the unpleasant parts to defuse them.

I also used to set limits like weighing the kid once a day only, and waking up to check if she was breathing regularly by an alarm clock, not frantically all the time. Having lists and records gave me a sense of control and also stopped the anxiety boiling over.

I knit a jacket for her in hospital that while I knit, I prayed/begged into every stitch (prayer shawls) and it became a sort of talisman former to wear and have. I had the same for her brother in a blanket - making something and putting all your wishes and worries into that and surrounding the child in it when you're physically absent is very comforting somehow.

I had the CPR and medical kits and everything, but that was just - basic. It didn't make much difference emotionally for me, but I was in a difficult marriage where I couldn't ask for help.

What helped most that I remember was practical help - people who asked and gave useful practical help like doing shopping, taking healthy kids for playdates, bringing meals over, etc. If you can send an all-purpose email listing what would help to close friends and family, it's a big relief for people who want to help but don't know how to help. You need extra resources right now to get enough sleep and rebuild the resources you used up while your kid was sick.

In a couple of months, you'll be back to regular parenting again and able to help other parents too so for now - lean on your friends and family.

And I don't know if this was just a me thing or what, but it helped a lot to do infant massage. The tactile connection and sense of physical therapy made her improved health feel real more than just cuddling.
posted by dorothyisunderwood at 7:45 AM on January 5, 2016

You just had a scary experience. How is your partner feeling about this?

I ask because I have I have a young child with a scary, rare, life-threatening medical condition, and as the breastfeeding mom who happened to work in healthcare, I was the primary parent at the hospital, the doctors' office, the lab (my husband passes out if he sees blood, so I've been the one to pin down my kid for every single one of his hundreds of blood tests during his life), arguing with health insurance for pharmacy meds, everything. You were the one in the hospital with your child, so you saw and heard everything, which is traumatic. Your partner was absent, and things were even more outside of their control, which is a different kind of trauma. I highly recommend talking to your partner about what you're both feeling, about what you both experienced, so that you can start to heal together. Because they're probably processing something as well - something different, but something all the same. I know that it's super hard to really talk when you are chasing two newly-mobile children who have no self-preservation instincts, but try when you can.

It took years for my husband and I to come to terms with our child's medical condition, and we did so in different ways. We didn't talk as much as we should have, as we were constantly in crisis mode the first year or so. But lately I've learned so much about him and am now able to view our experiences through a different lens, which has helped more than talking to friends or other parents who are not in our shoes.

I don't want to pile on to the "be grateful it wasn't worse" mini-theme that is going on upthread, but putting things into perspective really does help. During my son's last hospitalization (he was almost two years old), he was admitted to a pediatric unit for patients with cancer/immune system issues. The nursing staff told us it was a nice change of pace to take care of a child who would be able to go home within days, not months. For someone whose child is not curable, that comment took me by surprise, but it helped put things into perspective.
posted by Maarika at 7:50 AM on January 5, 2016 [1 favorite]

When you feel up to it, book a weekend away (doesn't have to be far away just somewhere new/different) with your partner. Leave the kids with family or someone trustworthy. Allow yourselves to talk as much as you need to, or not talk. Let your emotions do whatever they need to do. Have a lot of walking, and quiet time together.

Citation: I had an experience with a close relative in a life-threatening spell, and only really started letting go of the stress of it, and releasing all the feelings, when my then partner took me for a serendipitously-timed weekend away we'd had planned for a while. Until then, I failed to realise that I was still in "stiff upper lip for the other people suffering" mode.
posted by greenish at 7:55 AM on January 5, 2016

Time, more time! It will help. In terms of what you've just gone through, you are talking an eyeblink of recovery time. My 19-month old went to the ER a little over a month ago with a (mild) concussion - so incredibly scary and still far less traumatic than your experience. It took me a couple of weeks to be able to even go to our back door (where it happened) without my heart racing. Actually thinking about it still makes me anxious. (I have an anxiety disorder.) I think I will never again take walking down the back steps casually.

In terms of getting past the anxiety, self-care is a necessity. Can you book a massage? I found that a really good massage was helpful in letting some of the physical manifestations of my anxiety out. Yoga or other exercise would probably help clear the adrenaline. Also, I'm sure you're sleep deprived and possibly you haven't eaten enough lately - focusing on making sure your diet is good can help your body calm down. I know for me anxiety is worse when I eat a lot of foods that break down to simple sugars - or I just stop eating, which is even worse!

Long-term, if the anxiety remains an issue, I found neurofeedback training incredibly helpful in dealing with an anxiety disorder. But that's a slow process.

Obviously you need to get past the short-term panic levels you're experiencing. But I would note that this is a horrible, scary, awful thing to go through, and if it always makes you anxious to think about - that is normal.

I'm glad your child is better.
posted by john_snow at 8:06 AM on January 5, 2016

My LO was in the hospital at three weeks, and the dynamic in my relationship is very similar to what Maarika mentioned.

My hubby was not capable of talking about what his own feelings were during that time at all for several months, let alone of allowing me the space to talk about it. So I leaned on my mom friends. I still had a newborn at home so I asked people to visit me. As best as I could I scheduled playdates for my preschooler, which were much more about us moms than the kids. Many glasses of wine. Talking about it over and over, as though breathing the words out of my body was expelling the negative feelings, and all of the extra adrenaline, out of my body. Like that scene in The Green Mile.

We're about seven months out now, and I don't really think about that incident much now. It's winter, and of course I fret over bad colds and fevers, but aside from our regular preventative measures I don't think about my kids getting sick more than I did before. That is my choice. I could fret constantly and become that mom, but it's unproductive, and ultimately I don't think it's good for my kids' psyche, so I choose not to worry until it's time to worry.

Don't be afraid to continue asking for help - a meal, some babysitting, so you can get some time for yourself. What your family has gone through is a big deal and how you're feeling is normal. It's important to have the space you need to get your head and your emotions together (and equally as important for your partner).

So, yeah - talking, maybe yoga as mentioned above, time.
posted by vignettist at 8:22 AM on January 5, 2016

Oh wow, I really feel for you. My wife and I went through something similar and spent a lot of time in big hospitals worrying about our little ones.

I thought I'd just mention one tool I really wish I had at my disposal during that time. It was introduced to me by a consultant I work with. If you research your Meyers-Briggs personality type, you'll find four letters that are meant to represent your personality and preferences. Going beyond the superficial "which Harry Potter character am I" use of this tool, there is a really useful model for dealing with exhaustion, stress, and sickness.

According to this model, we tend to use four main functions, first through fourth. When in extreme stress, we often jump from our first directly to our third and fourth functions, skipping over the secondary function. Often this has some hard consequences, say if our third and fourth functions push us to drown our problems in alcohol, lash out in anger, skip out on food, or whatever. However, our secondary function is a powerful tool that tends to bring us back to the level. It can help us work through and cope with the problems causing the stress.

My advice to my past self, then, would be: Look up your personality function stack and especially your secondary function (it differs based on your type). Learn how that function can be used to deal with stress.

I hope this can be helpful for you. When I started to research this I found a lot of sympathetic people of my same personality type who offered lots of helpful direction in dealing with life's troubles.
posted by circular at 8:31 AM on January 5, 2016 [1 favorite]

When my youngest son was 5 weeks old we took him to the ER with a low fever. While he was there his blood oxygen levels dropped. He was intubated (it took 5 tries) and eventually transferred by helicopter to the regional children's hospital about 90 miles away.

He spent 3 days on a respirator and then another 2 days in the hospital. In the end it was determined that he had RSV, but we the confirmation tests did not come back until the day he was released from the hospital.

I tell you all of that to give you my background. What helped us move on was perspective about the original disease, RSV (in really young children) frequently requires hospital admission and a respirator, but with proper treatment is rarely fatal. Older children usually just have the same symptoms as a minor cold or ear infection. Additionally, there really are no long-term consequences associated with RSV infection.

I would recommend a follow-up appointment with your child's pediatrician to discuss the hospital stay, new things to watch out for, any future consequences of the disease or treatment. Additionally, for a child of that age make sure that you stay up-to-date on all vaccinations.
posted by Broken Ankle at 8:48 AM on January 5, 2016

Agreed that you need time and mental rest. Which, of course, is next to impossible to obtain when you have twins! :)

The below is focused on putting things into some perspective and I hope it is useful. Please ignore anything that feels unhelpful.

Now you know some things:
- You know what your child looks like when he's really sick
- You know that when your child got really sick, you recognized it, got medical care, and he got better
- You know that your child recovered without needing PICU support
- Your medical team knows to be alert that your child needs to be seen promptly if he starts getting sick and you get worried
- You know that if your child does get very sick in the future, that you have access to a PICU if need be.

If you need to unload emotionally to someone who's been there, please meMail me. Unfortunately I have a lot of personal experience in this department. My now 2-year old was admitted to the PICU for respiratory distress from viral lung infections once at age 7 months and three times between 15-17 months. Last winter was one hell of a winter and we felt ALL THE FEAR, especially when we were heading back into that PICU for the third goddamned time in two months.

It's shaping up to be another stressful winter for us - for reasons that are still being determined, our child gets abnormally ill from viruses. But, here are some things that are different than last year:
- Our pediatrician knows that if I call and say she needs to be seen, she must be seen no matter what
- We have a pediatric pulmonologist working on calibrating the right maintenance medications
- We know that even if she has to go to the hospital, she will get better with supportive care
- We are amassing a collection of medical equipment. We have a suction machine which helps stave off the breathing issues and now a pulse oximeter to help us make decisions about whether to take her to the pediatrician or the ER. (For $reasons it's better for us to avoid the ER if possible)

If any of those turn out to be things that your child needs, it will develop organically over time. You may not end up needing any of it. But if your child is hospitalized again for a similar issue, then these are all things that will come up with your pediatrician (or pulmonologist, if it turns out you need to be followed by one.)

Also: 15 months old is pretty much the worst winter you'll have in terms of respiratory infections. As a 3 month old everyone was being suuuper careful handling your baby, and he probably didn't get sick as much. Now he's mobile and licking everything in sight, plus it's the first time his immune system is seeing a lot of these viruses. And his lungs are small. Your child will grow, his immune system will develop, you can reasonably have faith that this is going to improve in the long term, whether this episode turns out to be an isolated event, or whether he gets sick again this year.

I am wishing you much support that it's an isolated event. BUT I want you to know that we faced down (ok, not the worst case scenario but damned close to it) last year, and it was awful and horrible and terrifying BUT WE GOT THROUGH IT AND NOW WE HAVE AN AMAZING WONDERFUL 2 YEAR OLD WHO IS AN ABSOLUTE FIRECRACKER AND YOU ARE GOING TO GET THROUGH THIS TOO.

Your kid has not even been *close* to the limits of what medicine can do for him. I don't mean that to trivialize your experience in any way - just, *even if* he does get sick again, *even if* he gets sicker than he did this time, the doctors still have lots of things they can do to help and he's still going to get better and grow. So, what you do to keep moving forward is you live your life as best you can and you assure yourself that if it does happen again you'll know what to do. For now, every day you wake up and don't go to the hospital is a good day.

It's hard to go this road mostly alone - we had a challenging 4yo at the time all this was happening, so like your husband, mine spent most of his time wrangling the other kid and I spent most of mine at the hospital. Cut yourself slack in as many other aspects of your life as you can, ask for help from whatever sources you can muster, and know that for a while after kid gets out of the hospital, the adrenaline letdown makes you feel like hell and that's normal.

Erm, obviously I have a lot to say on this topic and I will stop here but if you need to howl into the void at an internet stranger, I'll understand what you have to say.
posted by telepanda at 8:50 AM on January 5, 2016 [3 favorites]

I lost twin boys from twin-twin transfusion syndrome (TTTS) last July and know there's a forum via the website that will be very helpful to you. A sub-thread is dedicated to everyone's struggles with dealing with one healthy and one very sick/hospitalized baby.

It has been so hard, I empathize. But you still have not just one, but two. Gain some perspective from other parents of twins and count your lucky stars that it wasn't so much worse. I'm sorry for being harsh, but it's true. Just knowing there are dozens of other people who have struggled like we have, it makes me not feel so alone and alienated.
posted by lizbunny at 9:19 AM on January 5, 2016

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