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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
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
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
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 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
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!
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
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
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
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
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
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
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.
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
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