Hospital Stays & Surgery for Kids
|Questions & Advice||Advice about Surgery for ...|
I am suddenly finding myself becoming very emotional about my childs resolved health problems. He had surgery as a neo-nate for a heart defect, and is now completely fine. Most of the time so am I. Lately though it's been coming up in strange and sudden ways. I get emotional not only about what happened, but I feel like there is no distance despite the fact he'll be turning 4 soon. I feel almost exactly the way I did when he was in the hospital and newly diagnosed. Most of the resources I can find seem to be directed, naturally enough, at people who are going through the crisis portion. So has anyone else been there? Is/was there something helpful (book, website) that helped you through. Not over it
Dear Not Over It,
My son has surgery when he was 2 days old for a condition that was undiagnosed during my wife's pregnancy. He had a quick recovery and we went home two weeks later. We still have some complications related to the repair, but each year he improves and things get a bit easier.
I can comfortably tell you that my wife and I are not over the trauma of the experience and I am not sure if we will ever be completely over it. If I am driving by Children's Hospital and I see a helicopter landing on the roof, my day is ruined. If I hear stories on the radio of babies born with defects or problems, I find myself in tears.
I spoke with my priest about this and his advice was not to ignore the emotions, I should accept the emotions as my reality. Attempting to stifle or hide the emotions will not make them go way or help resolve your experience. Since he went though the surgery at that young age, he has no idea of the traumatic experience and we do our best to shelter him from our experience. I am simply grateful that he is doing better and that it is his mom and I that carry the burden of the emotional experience, not him. anon
It sounds like you're experiencing Post Traumatic Stress Disorder, which is defined by experiencing a life- threatening situation. You experienced your baby having a life-threatening situation, and when your baby is so young, it feels like it's happening to you as well. My daughter passed away as a baby following surgery, and I was diagnosed with PTSD. It took a lot of work, including making myself go to the ''scene of the crime'' in order to help other people, before I got a little better. I still grapple with it, and suspect I always will. I think what you're feeling is normal and may just be a delayed reaction since you were in survival mode when your child was younger. Talking to a therapist who specializes in PTSD is probably a good idea. PTSD survivor
I had a preemie with a long hospital stay who is now 4 now too. I feel very fortunate that the fragility and anxiety of that time now seem far away. But it hit me like a ton of bricks at the time, as I'm sure it did you, and took me a very, very long time to get over. I think it's only natural to still feel some of the anxiety and fragility and preciousness of a new young life. Sometimes it's a particular trigger - you understand your child is now growing up and out of their most fragile phase which involves some sense of loss; maybe there is something in your own life you feel a bit unsure about - and sometimes the feeling just comes up and you can't pinpoint why.
You might want to try a ''past event writing'' exercise that is sometimes recommended in therapy - writing a short story, or even just an unpolished account of what you went through that you will destroy after you write it out - it can be a thereupetic help to just get it out; of course therapy is good; I have also found accounts of maternal depression to be helpful (''The Ghost in the House'' by Tracy Thompson, etc. ).
It's really hard to explain to others whose children didn't have health issues how we went through a sad and mournful period where instead of enjoying the wonder of new parenthood, we were just sad and a mess of worry. So maybe you didn't really allow yourself to grieve this in the first place? (I know I always felt guilty about my feelings of sadness and feeling sorry for myself at the time). Anyhow, you are not alone, it's okay to feel sad about what you went through no matter what the calendar date, but allow yourself to feel what you feel so that you can feel better soon and take joy in your now healthy child. - Good Wishes from a Fellow Traveler
Still Emotional Mom, I was moved to respond to your post when I read it. My initial thoughts are: Are you currently in your own therapy or involved with some personal/spiritual work? That could be a really good space for you to explore what's coming up for you and what the intensity of your emotions may be related to. Something in your own personal history that the surgery experience stirred up, that might heighten your reaction to a sense of powerlessess and not being able to protect your child? Seems like this could be a good opportunity for growth, though painful. All the best. Alexis
I'm so sorry you're still experiencing this! Post-traumatic stress disorder can affect parents in your situation. I'm afraid I don't have specific recommendations, but perhaps you should seek out a therapist who specializes in this area. R.K.
I'm sorry to hear about what you are experiencing. I can kind of relate, though I am not sure if my hang ups about my child's surgery are quite the same as what you described.
My son is nearly three now. He was born with pyloric stenosis, but the main symptom by which it is diagnosed did not present in the usual way, also his symptoms began just days after birth, whereas normally symptoms do not begin until about 2 weeks after birth. Long story short, the condition is usually discovered and surgically corrected around 4 weeks of age, but his was not properly diagnosed until he was 2 months old and weighed less than when he'd been born. He was quite literally starving and dehydrated to death. He'd been given half a dozen incorrect diagnoses and we'd taken him to his ped multiple times per week and to the ER several times. It was not just the doctors that failed us, but friends and family as well. People kept telling me things like ''well all babies spit up.'' I knew something was very, very wrong and that he was throwing up every single ounce we tried so desperately to get in his body, not spitting up.
Anyway, although his surgery was nearly 3 years ago and he recovered well and is just fine now, when I dress him and see his scars I always want to cry. Sometimes, out of nowhere, I find myself in my head just rehearsing what I wish I could say to all the people that I am angry at from things that happened when he was sick and had the surgery. I feel like everyone thinks that he is fine now and that's all that matters. But to me that isn't all that matters. Things others said and did, or failed to do, matter a lot to me still. I can't let go of my anger about how things went down. The people it involves have no idea that I feel this way. They think all's well that ends well and they've totally forgotten anything I am mad at them for. Sometimes I think what might have been different if he had been treated earlier as he should have been. He has some anxiety issues and I wonder sometimes, if it isn't related to what happened to him. He is a difficult eater, and I often wonder if that isn't related to having spent those first 2 months starved and tortured with a cruel response to his attempts to allieve the desperate hunger (his body would vomit any food he tried to eat because his stomach was closed off at the intestines). My husband never thinks about any of this and is satisfied with our healthy and happy little boy.
The only thing that helps me move past it all is to constantly remind myself to let go. I can't change the past and being angry at everyone solves nothing either. Sorry if this isn't much help but I wanted you to know you are not alone. anon
my 7 month old daughter recently had open heart surgery and since we have been back home (about 3 weeks), her sleep cycle is totally off (she awakens and wants to nurse about 5-6 times per night). i spoke with the DR and he said to be patient, but my husband and i are extremely exhausted and dont know how much longer we can and should accomodate her (dont want her to fall in to a really bad pattern). has anyone else experienced anything like this? was there anything that you did that helped the situation? prior to surgery she was an excellent sleeper only waking 1-2 times/night. we really do not want to do the cry out method (especially after everything she has been thru), but we are not sure what else to do. any advice is greatly appreciated. thanks! jen
I have no experience with surgery but feel sorry for what your family had to go through. I wouldn't worry so much about a bad pattern for your daughter, but your exhaustion is a concern. If your daughter is sleeping in a separate room or in a crib in the same room as you, consider having her sleep in your bed with you and continue nursing her as much as she needs it (or alternately, just stroking her back to sleep...)for a little while. Maybe a couple of weeks, just until you and your husband recover a bit. Of course, I recommend you find out about what precautions to take so you don't accidentally sleep on her, maybe having her sleep on a changing pad that protrudes on the sides can avoid that... Wishing you strength and best of luck. Mom of 8 year-old Parent
Just be patient. Your daughter has been through a lot and is still recovering. Take care of her first. Nursing is very comforting and will help the healing process. You'll survive. Our healthy 9 month old is still up several times a night (she never slept well and sleep training was ruining her brothers sleep) and we're still here.
I know not sleeping well is hard, but take care of your daughter for now. She'll get back to good sleep soon enough. Have a heart for your daughter
Our daughter had major surgery as an infant, too--I definitely relate! There's no way I could let my girl cry it out after that experience.
You know, lots of babies, if not most, have a surge in waking at about that age; it might be that your daughter's sleeplessness is developmental rather than only due to the hospital. No matter what the cause, Elizabeth Pantly's No Cry Sleep Solution may help. Her methods take work and time, but they're gentle and they do work for many families. Good luck!
I have no experience with this, only heaps and heaps of empathy. I can't imagine what wrecks you must be after enduring your baby's very intensive surgery. That said, I know that an adult takes 3-4 months to recover from heart surgery. Maybe your surgeon can give you an idea of how long the real recovery should take. And I would guess that your daughter is feeling extremely out of sorts, and certainly insecure. If it were me, I'd give in to her for a while until she's more fully recovered. My daughter used to nurse whenever she was scared, and she is a perfectly well-adjusted elementary kid now, so don't worry about that too much. At 7 months, there is a good chance she'll fall into a really annoying pattern, but it won't last forever. One thing you can do is just give her the super-quick, utilitarian nursing in the middle of the night--5 minutes max, no hugs & cuddles, so she gets the message that it's bedtime. And/or just go in and pat her on the back to let her know that you're there, but don't nurse. Give her maximum attention before bedtime and after waking in the morning, and during the daytime. And if you're lucky she'll get tired of it quickly. More likely she'll be furious at not getting what she wants, and you'll eventuallly have to taper off. If you don't have the energy for that now, go ahead and nurse her but give yourself a time frame-e.g., 3 months-at which you'll start tapering off more definitively. Good luck. You'll be in my thoughts & prayers.
Hi Jen, Congratulations on making it through the surgery. You have been through an incredibly difficult experience. Now you are in a period of healing. The Dr is right, patience is required. But so is sleep. You have all been through a lot and are exhausted.
Your instincts are correct. This is no time to try cry it out. Think about the surgery from you daughter's perspective. She is put into a deep sleep. During the sleep her body is cut open and resown and she wakes up uncomfortable, disoriented, with tubes and contraptions sticking out of her body. No wonder she is leery of sleep. You know that this surgery saved her life but she has no way to comprehend what happened to her. She only knows that she doesn't want it to happen again. Your daughter is waking for reassurance that you are nearby and all is well. She may also be needing the extra nutrition of the night feedings as her body heals and regrows lost tissue.
So your daughter needs extra reassurance and extra nutrition and you and your husband need SLEEP. Here are some suggestions to help all of you get what you need.
One possibility is for you and your husband to take turns being on night duty. One of you sleeps where you can hear and respond to your baby. The other sleeps in another part of the house with ear plugs or whatever it takes to be blissfully ignorant. There is no reason for all three of you to be awake. The next night you switch off. This is not a perfect solution but at some uninterrupted sleep would do you a world of good.
If you are home with the baby during the day perhaps you can let your husband sleep at night and have a friend, relative or hired help come during the day to care for the baby while you sleep. Remember you are all still healing. It is OK to ask for extra help.
If the baby seems to be feeding for comfort more than nutrition try stretching the times between feeding and offer other forms of comfort at night. This will make it easier for her to fall back into self soothing at night as her anxiety about sleep abates.
I hope at least some of what I have said is useful. Best wishes for speeding healing to you, your husband and your little one. Katrinca
My 3 1/2 yr old son likely will need surgery to correct a problem with one of his kidneys. He's a sensitive kid, and I'm not sure how to talk to him about the surgery to lessen the trauma of the experience. I feel like I need to prepare him, but I *don't* want to scare him. Any advice? I'm also thinking that some ''gifts'' (bribes, distractions, whatever you want to call them) might help. Any suggestions there? Any ''been there, done that'' stories appreciated. I'm trying really hard to hide my fear, to be as ''natural'' as possible, but this is hard for me, too. (And any advice on how to successfully fake ''natural'' in this situation appreciated, too!) Freaked Out Mom
My daughter had surgery to correct crossed eyes about 1.5 yrs ago when she was 3.5 yrs old. Her surgery was in Seattle and our experience with the hospital was really good. They offered a ''pre-op party'' a few days before where other kids who were getting surgery could come with their families and check things out ahead of time and even climb onto the operating table and play with the controls to make it go up and down and try on the anesthesia masks. It was great! On the day of the surgery, even though she was nervous, our daughter knew exactly what to expect and she even got to help the anestheiologist disepense her medicines pre surgery. She marched right into the operating room and climbed onto the table herself (she is NOT a child who typlically walks boldly in unfamiliar situations).
I highly recommend that you make sure the hospital will allow you to be at your child's side when they go to sleep, it was really hard for me to see her go under the anesthesia but great for her to see me right there. Also, make sure the hospital is consciencious about making sure they come get you BEFORE your child wakes up after surgery. That was really important for us.
All in all, a good hospital team and communicative surgeon really make a big difference. We found it really important to just be up front with our daughter ahead of time about what they needed to do and why they needed to do it. It helped her to know about other people she knew who had also had surgery for various reasons so she could see that people came out of it OK. Before her operation, whenever I brought it up she would say ''I'm not going!'' and we would just acknowledge her fear and reaffirm that we would be there with her and we'd all do our best to make it as fun as we could.
Afterward she was mostly unphased (I was emotionally exhasusted however). She spent a lot of time (months) doing surgery on her animals, trying to reinact it and continue to process the whole experience but it was very matter of fact. I would also warn you that general anesthesia tends to knock out the immune system somewhat so she caught a lot more colds for about a year after the surgery.
I would also advise that you are VERY careful what you say in front of your son about the surgery. My daughter would get really upset when I would talk about it to other people in front of her. She doesn't mind so much now but it used to really bother her.
I wish you a safe and smooth experience. It will be full of strong feelings for all of you, but your son (and you) will come out just fine! Best wishes, Sarah
I am a 54 year old who had extensive surgery up to 4 years of age. My advice from having been through what your son will experience is two-fold. When you explain what will happen and why, you make sure that he understands that there is nothing ''wrong'' (in the sense of bad) with him. Also, you want to avoid any feelings of abandonment. For me it was very important that my parents were with me at the hospital when possible and that I knew that they would show up when they said they would. This is the outline, but if you would like to discuss this further, I would be happy to give you more detail about my experience. I don't know specifics about your son's situation, e.g., length of expected stay, follow-up surgery etc., that might be germane. patrick
My son had his tonsils out at about 3yrs 8 mos. Children's hospital set up a meeting for us with the social worker to help prepare him. We met with the surgeon also. My son got to talk with them about the upcoming surgery (he told the doctor he didn't want it done because he was afraid the knife would hurt, and he told the social worker the only good thing about it was he wouldn't have to eat broccoli for a week). They decided he was anxious enough that they gave him demerol before sending him in for the anaesthetic and he went off cheerfully. He felt awful afterwards, of course, but there was no lasting trauma. I think it helped him to have a chance to see the facilities. Also, he had questions later on (what happened to my tonsils?) and the social worker talked with him on the phone about it. Maybe your hospital will also provide this help. Another anxious mom
I haven't exactly been there but my advice is not to tell him about it too far in advance- maybe just a day or two. If he's sensitive maybe he'll worry about it if told sooner. Definately bribe him- promise him it will be over quickly and you'll be there the whole time and bring him lots of treats and a few gifts afterward! good luck another mom
Hi Freaked-out, I struggled with this too when my then 3 yo son had surgery on his foot (he was just in for the day, and had general anesthesia). The good news is that we have world class medical care in the bay area. And its true, everything went beautifully, but I still get choked up when I think back to when I handed over my son, whom I was cradling in my arms, to the surgical team dressed in scrubs/masks. It's hard to stay calm and upbeat when everything is strange and so serious. Luckily my husband was there, and we took turns being calm and supportive for each other(I don't think I could have bluffed it the whole time on my own!). One thing that helped - the anesthesiologist gave my son some kind of relaxing medication about 45 minutes before the surgery, so my son was not afraid. However, I don't think I adaquately prepared him, because after I handed him over, I heard him demand, in a loud voice, ''what's going on here!'' Which is kind of funny now, if you think of a little 3yo demanding answers from a team of 6 adults peering at him over surgical masks and dressed in scrubs. But at the time it ripped at my heart. What you're facing is one of the hardest things I've had to do. Luckily it was over quickly, and everything turned out just fine. And I'm sure it will in your case too. Donna
My three and a half year old son is going to have surgery in a couple of weeks (minor -- ear tubes and adenoid removal), and he always does better when he understands in advance what is going to happen. I don't want to freak him out though. About how long in advance should I bring the subject up? And how specific should I get about what's going to happen (he's been through this once before, at 2, and the worst part about it then was waking up from the anesthetic)? In addition, any advice for books that might be useful? Karen
hello, keep it simple and truthful. i wouldn't mention it until the week before his procedure at the most so he doesn't perseverate and begin to fear the whole experience. be positive and show that you have every confidence in the healthcare team that will be caring for your son (despite the fact that having a child in surgery no matter how minimal, is nerve wracking). your hospital likely has a pediatric preoperative orientation that would suit your son well at his age. this would likely include an age-appropriate tour of the preop area he will be visitng the day of his surgery, etc. good luck! been a parent of a toddler in surgery
If your son is getting surgery at Oakland Children's, you can get (free) advice from the Child Life Specialist. Don't know what other hospitals provide this service, but it is worth asking the hospital if it is available. These folks can answer many of your questions. Some things we did that helped with our 5 year old were dramatic play- you can use a doll or stuffed animal--of the procedure and also read the Mr. Rogers book about going to the hospital ( long for a three year old--you might want to skip some of the text and talk about the pictures) I think starting to talk and play some about this a week or two in advance is helpful. Main thing is for the talk and play to be relaxed and fun, but also making space for the child's feelings and concerns. Children need to be reassured, but not mislead about there being some discomfort involved. Best of luck--hope it goes well! a Parent and an Early Childhood educator
I know you can set up a preoperative clinic visit in the outpatient facility of Childrens Hospital. The childlife specialist there, Tom, is great. Tom will go over what to expect, show you and your child where they go to sleep, and answer all questions. It is common for children to have a short period of disorient ation after anesthesia. Most children are not aware of how they may be acting at this time. This period varies depending on the age, the type of procedure, the length of anesthesia, etc. david
Where are you having the surgery? Places that do pediatric surgery may have a 'child life' specialist/social worker who can meet with you and your child to prepare for the surgery. They discuss and play out the surgery at an age appropriate level. We saw someone at Children's in the outpatient surgery center and also at UCSF at the ambulatory care center. At UC we had to ask for it but at Children's it was automatic. best wishes
My 8-year-old daughter has recently been diagnosed with tethered cord. She will be entering Children's Hospital in Oakland in a week or two to have surgery to correct this defect in her spinal cord. Her neurosurgeon is Dr. Nagle. If anyone has any experience with this condition, or with surgery at Children's, or any advice on how to make this as untraumatic as possible for her, me, and her 3-year-old sister I would be most grateful. You may email me directly. I am a single parent with no family in the area, and have recently used up all my sick leave and most of my vacation leave because I have been out with pneumonia, and I'm feeling a little overwhelmed by it all ... Melinda
See Recommendations: Children's Hospital for more info.
Preparations: There are children's books about going to the hospital--I don't know what's currently on the shelves, they seem to come and go, but they all say here's what you'll find and it won't be all that bad. If it's not too babyish, one of those would probably help both your daughters; or you may need two age-appropriate books. (My guess is that the 8-year-old is going to want some babying, too--she'll probably resent being treated like a 3-year-old, but maybe not being treated like a 5-year-old.) Both of them, especially the 3-year-old, may have to be told more than once that the 8-year-old is going to the hospital to get better, not to die! 3-year-olds often have vague and unpleasant ideas about sickness and hospitals. They're kind of funny, from a distance. For both your daughters, I think the crucial factor will be your take on things--if you're upbeat and optimistic, or if you can at least make a good show of it, they'll do the same.
I expect your 8-year-old will want to take some mementoes of home along--stuffed animals, dolls, books, whatever. I know I would. You would be wise to clear them with the hospital staff in advance, of course--if they need to bend a rule, they're more likely to do it that way than when the child is checking in; or at least your daughter can be prepared and have an acceptable substitute ready. And you do want to have a good relationship with the nurses.
(3a) Regarding the leave business: I think your situation falls under the Family Medical Leave Act: you should be able to take time off to deal with this without any harm. See http://hrweb.berkeley.edu/BENEFITS/Fmla.htm. But don't delay: timely notice is required.
(3b) Also, UC Berkeley has a Catastrophic Leave-Sharing Program, under which employees who have lots of vacation leave can contribute some of it to employees who are in need of it due to serious health conditions. See http://hrweb.berkeley.edu/POLICY/Catlvshr.htm for the draft policy, or ask your department's personnel officer for the real policy, which came out in July in a Deans & Directors memo. I haven't done a word-by-word comparison, but the draft policy and the real one look the same to me. Best of luck, John
Our younger daughter also spent a night at Children's Hospital the winter before last. She had pneumonia, and had to have an iv and oxygen - which is nothing compared to surgery, but which seemed very awful at the time. Anyway -- she actually had a wonderful time. The nurse who put the IV in was absolutely wonderful. She really enjoyed all the gizmos in her room (the tv in bed! the small oxygen canister to wheel around! the fuzzy yellow slippers!). I think she also enjoyed having some time alone with me, since I stayed with her the whole time. She also enjoyed having complete control of the television. She was almost 5 at the time -- she has a sister two years older. Christina
Anyway -- despite the many awful aspects of hospital visits, there is something to be said for the novelty of it all. Definitely stay overnight with her, and she will probably appreciate the time spent with just her and no sibling.
Having visitors is fun, too -- Our older daughter came to visit with my husband. They let us meet them out in some neutral room (since she was too young to come into the hospital room) and she was unspeakably jealous (the slippers, the tiny oxygen-on-wheels). I think it was probably reassuring for them to see each other.
I think we also had a good book to read, which was good to avoid boredom. I don't know if you still read to your eight-year-old, but she might like the luxury of having a parent free to read chapter after chapter -- best of luck --
It's looking like my husband will need surgery to help repair a rotator cuff injury, after which he might need to stay in hospital overnight or so. I would sure appreciate any advice you might have in how to best prepare our very verbal 2 1/2 year old son. He's used to spending the night away from one or both of us and we have lots of very supportive family and friends nearby, so I'm not particularly concerned with that aspect of the situation. I'm more interested in things I can do to help him understand and prepare for what's going to happen. I've checked the website and only found one repsonse on this topic and it focused more on ways to get the rest necessary for a full recovery. Thanks again for your help! Kerri
I think that you're making a bigger deal of this than it needs to be. Just tell your son that Daddy is going to the doctor to get his shoulder fixed so that it won't hurt him so much. This reinforces the idea that doctors are our friends and make us feel better, not people to be afraid of.
You could explain that it will take awhile for his shoulder to get all the way better so that your son won't expect his father to be able to immediately lift him up or play ball. If he's curious to know more details, present information in a positive way. He'll probably ask if what the doctor did hurt, so his father can tell him that it didn't (or very little if it did- be honest), that doctors always do their best to make sure that they don't hurt people even though sometimes you feel a little worse before you feel better. You could tell him that our bodies are amazing and wonderful and know how to heal themselves, but sometimes need a doctor to help. Sounds like your kid is very inquisitive and you'll probably get a lot of questions, but this is a good opportunity to help him learn.
I am having surgery soon. I will be in the hospital for 3 to 5 days and at home for about a month. I am not supposed to lift or carry during that time. I have two sons. One is 6 and the other is nearly 4 years old. (They are in school/daycare during the day.) I have a couple of questions.
Any helpful hints for preparing the boys for my absence during the surgery? My youngest son weighs 44 pounds and loves to run and jump on anyone in a sitting position. We have started explaining that he won't be able to do that when I get back from the hospital but we know he will not remember. I hope to barricade myself behind pillows and maybe a TV tray or two but I'd love advice from others who have dealt with a highly energetic child after surgery.
My husband recently had minor surgery which turned out to be much more major then we had been advised. (My daughter's preschool teacher wisely remarked that the surgery is only minor for the surgeon.) We have an almost 3 year old at home. All went well, as I'm sure it will for your family. Yes, he kept pillows around him and let our little girl know (when he saw the pre-body-launch gleam in her eye) that Daddy couldn't do any rough-housing for a while. The very genuine groan and grimace of pain the few times this rule was trespassed did a lot to make her understand. I also went to Toy-Go-Round on Solano (used toys to save $), and bought a couple of simple board games that my daughter could play with her Daddy on the bed while he was resting. Other things like drawing, etc., might be good (but calm and relatively restful) ways for you to interact with your kids without over straining yourself.
The most important thing is not to return to your normal activities too soon!!! I'm guessing this will be a tough one for a mom of two. Depending on your situation (partner? is partner helpful?, $ to spare?), perhaps you could consider getting a little outside help. Maybe some of the previously posted suggestions for house cleaners/keepers could provide a few hours of work for your family? TWICE the estimated recovery time was what it took to get my husband back to semi-normal. And even with only one child, I was really tired at the end of it, because he does a lot for our family. So please, if it's at all financially possible, consider getting a little outside paid support for yourself. It will pay you back in good health. Best wishes. Catherine