View Full Version : Does everyone take their child out?
03-12-2002, 05:08 PM
I rarely take Celia out with me anywhere. People are always smoking at the entrances of places or restruants only have an imaginary wall between smoking and non-smoking. I always think of all the people who have touch something she might touch. We live in Kansas too so the wind blows more than it doesn't. Plus taking all the things she needs is exausting for me and my husband. We also have 2 other girls ages 12 and 8, so they end up helping to haul things around if we go anywhere. Maybe I'm just too paranoid but I just think it's safer to keep her at home. What does the rest of the world do with their trached kids?http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/confused.gif? Gretchen(Celia's mom)
03-12-2002, 11:06 PM
My son Jimmy Logan has a trach and is ventilator dependent, so we have a couple more pieces of equipment to take when we go out. We try to get him out of the house at least once a week. Sometimes this outing is just to my mom's house so he can have a change of environment. He suffers from a rare nueromuscular disorder and is unable to sit independently and unable to walk. He likes sitting in his stroller as long as he is moving but doesn't care to sit still for too long. He is fed through a g-tube so a restaurant doesn't hold much interest for him. Sometimes I feel guilty that we don't get him out enough. He loves to go to the mall and ride around. We take him to church. He's been to our county fair a two times and loves watching all the people and all the lights. In a few weeks he'll be going to an Easter Egg hunt its hard but we try to give him as many experiences that other 2 1/2 yr olds have. We try to get him around other kids as much as we can, those that have disabilties as well as those that don't. Because of the care that he requires our house often feels like a prison to my husband and I, but I don't want my son to feel that way.
There will always be germs, and no matter what you do you won't be able to protect him from all of them. When you go out just follow the same procedures to control germs that you do at your house.
Anne, mom to Jimmy Logan (2 1/2) GBS, trach, vent dependent, g-tube
03-13-2002, 09:16 AM
We take Lily out as much as we would a "normal" kid. Â*Yes, it's a pain to take all her stuff, but it is so good for her and for ME to get out of the house. Â*I stick her emergency bag and suction bag under the stroller and strap her huge diaper bag over the handle of the stroller, and that makes it a little more manageable. Â* It's a little unnerving to deal with people's stares and dumb questions and stuff, but I'm trying to develop a thicker skin about stuff like that. Â*We don't sit anywhere in a restaurant where I can smell smoke (I get up and move if necessary). Â*I used to not drive anywhere with Lily by myself, but thanks to a good friend (thanks, Margee! ) I've gotten a lot braver about driving with her. Â*I just pull over if I need to suction her or anything. Â*We try to have as much fun as possible with Lily and let her have as "normal" of a life as possible, within reason. Â*Good luck!
Erica (Lily's mom)
03-13-2002, 03:20 PM
My daughter morgan was 4 months when she was finally trached. We knew by the time she was a month old she had tracheamalacia but, at that time they said it wasn't that bad. Within 3 months she was severe. Many cynotic and apnea spells but, because of other health problems and surgeries the malacia always seemed to be pushed towards the back as far as the problem she was having. I had to bug and bug and finally when they did check her again she was 9/10 collapsing which is severe. She ended up being trached the same day after they brought her up from the bronchoscopy because she had an apnea and we almost lost her. Anyway, I was like you. I didn't want her going anywere and didn't want her around a lot of people. She is 16 months now and I have to say that my view on that ended quickly because I could see it effected her emotionally when I didn't take her with me or kept her away from other kids. I know we must be carful but, it is very important to keep there lives as "NORMAL" as possible too. We don't like it when people treat are kids different from other kids so why should we. Humidivents work wonders as far as a lot of protection and I do still try to stay away from family memebers that are sick but, I couldn't imagine not having morgan go every place I did. She just loves being out and exploring just like everyone else. It makes them grow into happy and healthy people.
03-13-2002, 03:25 PM
We took Aaron everywhere we went, along with his twin brother who uses a wheelchair. Yes, lot's of stuff! One advantage we have with Aaron is that he seems to have a very strong immune system, so even with a trach, he was rarely sick. I think if your kids tend to pick up every "bug" around, you might need to be more careful. Infection control is always helpful, especially handwashing.
It took me about a year after Aaron was decannulated to get use to not having the portable suction machine on my shoulder! For the longest time, I'd have this feeling that I was forgetting something eveytime I left the house!
03-13-2002, 09:40 PM
Thank you all for your stories. I know I sound really rigid but I have actually loosened up in the last 4 years. I also have to say we live in a town of a few hundred people so we have to drive 25min. to go to Wal-mart or the grocery store. I have taken her a few time to Wal-Mart and out to eat.(She doesn't eat by mouth but I do.) I have also gotten ok with taking her outside to sit and play. I just still don't take her everywhere with me. Although I don't go places often anyway. We've been out of a nurse for 6 months, so with the weather we've all been home alot. I have been thinking with spring on the way that she will be able to get out more, I was just curious what everyone else did!!!!
03-19-2002, 01:44 AM
Imogen was 6 when she was trached and so had already had all that experience of freedom and going places etc. There was no way that we wanted to take that away from her after the trach went in. I can't think of anywhere that we've actually decided "no its too risky or too hard" to take her. Mind you we do avoid places where there is likely to be smoke etc.
We are relatively isolated in terms of quick access to a hospital (we would need to be choppered off the Island in an emergency, but even that can take up to an hour from when something first 'happens' to when we arrive at the hospital) so we've always tried to be as prepared as possible to deal with emergencies (there is an ambulance and GP on the Island).
Imogen lives a very full and active life and I think that is some compensation for the hassles that come with having a trach. We've tried to ensure that the trach is a small part of her life...not the focus of it. http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/smile.gif
I take Grace out for a walk whenever the weather permits. I am wary about taking her out to public places during the cold and flu season, but managed a successful trip to the shopping mall a few weeks ago which we all enjoyed.
I still don't take Grace to the supermarket because she still needs a fair amount of suction and it is a pain when you have a queue of people behind you tutting because you have to stop packing your shopping away.
Unfortunately last year Grace did have a lot of viruses so we did the right thing by keeping her away from crowded places, but she is now 20 months old and is a lot stronger. In the UK we don't have such strict anti-smoking laws so taking her to a restaurant is out of the question until she is decannulated.
I will also start taking her to toddler groups once spring has arrived (and keep my fingers crossed).
03-19-2002, 11:05 PM
Hi everyone, Thanks again for your replies. I know Celia is 4 and we've been doing this a long time,but it doesn't change how I feel about taking her out and risk her getting sick. It still scares me to death. I also know from others stories that I don't have as much equipment to worry about since she is not on a vent. Thank you Sue for letting me know I am not the only "freak" about taking Celia out!!!!! I was only 21 when I had Celia and she was my 1 st biological child. (My older 2 are my husbands from his 1st marrige that we are raising.We got together when Celia was 8 months old. I was also married before and divorced when Celia was 3 months old.) So I was young and thinking of the kind of stories you always hear about birth and that is not the way it went and to watch you sweet baby basically die again and again is horrible as some of you know. Maybe that is why I am so protective,but I don't think I keep her isolated from the world by not taking her out very much. I have lots of friends who come to town and Celia plays with their kids. We do go out and sit outside if it is nice and I take her to have her pictures taken. She also gets out to go to tons of Dr.s appointments. We always try to go to nana and papa's and g-ma and g-pa's for holidays. I just try to stick with safe places that I know are clean. I guess we all handle things different although I was very surprised to see how many of you go out all the time. Maybe some day I'll get there too. The chance for pre-school is coming up so maybe that is a first step. Thanks again!!!!!! Gretchen
04-23-2005, 02:55 PM
Emma has only been to the docs offices and that is it. She has had some respitory issues with destats and has been in the hospital 4 times since Christmas. So her doc didn't even want family visiting at home (except mom dad bro sis etc) for the last 2 months. RSV is the big threat even with the shots they want to be extra careful. She will be going to a center for children with disabilities hopefully next month to start some outpatient PT for her muslces. I MIGHT get up the nerve to have her and her twins pictures made soon but probably not until the end of May depending on her condition.
04-23-2005, 10:39 PM
I think everyone is different. I didn't take Donovan out pretty much the first year, except doctor appts, one trip to see family, and one to the mall to see Santa (as if there weren't germs there!). Since then, we started going out more regularly, at least one or twice a week, minimum. He starts at the Developmental Center in August. I don't think it hurt him the first year, but I think being at home, since he's an only child and there are very few other children around, has held him back somewhat developmentally. I am looking forward to seeing how he does around other children. I think it will motivate him much better than we, our nurses, or his therapists ever could!!! How do you "make" an almost 2 year old do therapy anyway? He sees them coming!
Anyway, he's thoroughly enjoyed traveling. He LOVES the van and going bye-bye. I don't want to treat him any different than any other child, sick or not. He is in awe of the world. I remember the first time we took him for a walk in our neighborhood when he got home from the hospital. He'd never seen trees before and he just looked and looked at them. He still LOVES the outdoors. Last night, I took him out, after he lead me to the door and grabbed the doorknob for the first time, and showed him the full moon. He just grinned and looked around in awe. I said, "it's night time, everyone has gone nite-nite. That's the moon, baby. Do you see the moon?" Then, I howled at the moon and he grinned at me. It's just amazing to see your child learning new things everyday.
I also agree with others that the world needs to see our kids too! I think you have to balance medical needs with what is "normal" for children. Lots of doctors and medical professionals don't understand that, but I think kids do and parents do too.
Don't feel bad for not taking your daughter out though. This is a good topic and when you live in isolation, like many of us do, you don't have much to measure by. We're all learning this anyway!
I'll tell you this though, Donovan would be a major couch potato if I didn't take him out! And I just about went crazy the first year with anxiety and depression. A definite contributing factor was not feeling like I was safe to do anything or take Donovan anywhere. It has helped me A LOT to get out more too.
Thanks for bringing this topic up.
04-23-2005, 10:47 PM
I swore from day one that I wanted Indie to have as normal a life as I possilby could, so we took her out all the time everywhere we went. I would leave her at home if she was sick but otherwise we always took her.
I used to be bothered by the way people stared but then one day I decided not to take on other people's "stuff". I have learned the fine art of looking past people and not caring one bit what they think. I don't think there is a right or wrong, you have to do what works for your life. My motto is.....if someone can figure out that I am suctioning, then they are staring too darn long. You are a great mum and I understand wanting to protect your baby. At the end of the day, we will all have wonderful well adjusted kids.
It is not easy taking a child with a trach outside the house but we do it all the time. We are careful to avoid taking her out if it is too cold or even too hot. We have 4 others (2 of them are also in wheel chairs and 2 are 20 and 24 months who usually are in a double stroller). We avoid all smoking areas if at all posisble or hurry past them if they are unavoidable.
As difficult as it is to take her out, we want her to live as "typical" a life as she can. There is so little she can do and this is the least we can do for her. We have found that
for the most part she stays healthier than some of the others.
Maybe it is her oxygen. I threatened earlier this week to start sharing hers with her to help my allergies. (I finally got an allergy shot...ha!)
Take your little one out as often as you can. It will do the child and you a world of good. Of course you and the other girls need some time for each other too.
Good Luck and God Bless You.
Judy, Ken and the 5 very special Angels http://www.tracheostomy.com/iB_html/non-cgi/emoticons/angel.gif
04-24-2005, 05:01 PM
We made a promise to ourselves before Chase came home, he was part of the family and would do what we did.
I think it was about a month and we were taking him to breakfast with us on Sunday's. We are lucky that down here in Florida there is a no smoking policy at restaurants so that helps big time.
Even in the beginning with the vent and the 24 hour feedings by pump we would do it. We even would wake up early during the week to move Chase outta his room as we didn't want the nurses to let him lay in there all day..he had had enough of that in the NICU as far as we were concerned.
Slowly Chase has "lost" some of his euipment and he goes everywhere we do now. We just make sure there is plenty of anti-bacterial wipes in the bag and wipe everything down. He gets excited to hear "wanna go bye bye". His favorite places are WalMart and Home Depot!
Don't get me wrong, on Saturday I do the grocery shopping and stuff WITHOUT Chase as that is MY escape. Dad does his whatever men do on Sunday without Chase but other than that we all do stuff together
04-24-2005, 05:04 PM
forgot to say that one time while at the Japanese steakhouse we had to suction and a little girl about 8 years old was veeerrrryyy interested...when she saw that I was done out came the questions..when I explained he had a hard time breathing..she said "Oh, Asthma, I know about asthma" and we just left it at that! When she found out it was "asthma" she totally lost interest!
04-24-2005, 05:35 PM
We're planning on sending Angus to nursery soon. I've applied to the one Juliet went to and the manager said that was OK. I'm hoping that the Home Vent service can come to some arrangement with the ward and get him into nursery 2 days a week to start with then more days as his care team becomes complete. Ultimately he needs to be there full time while I'm at work. I don't plan on keeping him away from the rest of the world and germs until he's decannulated. I'm a novice though, so I may change my mind once he's been whacked with a few chest infections. I never was careful about stuff apart from basic hygiene with his sister, and I've been the same with him - just lots of handwashing. Other than that, if he drops his toy on the floor I just hand it right back to him. I don't stop him chewing things.
We take Angus out to the park or to a cafe at weekends, and the nurses take him out of hospital to the park or up the high street during the week in his buggy. He seems to enjoy it, and I think he'll LOVE nursery. He's never happier than when he's sitting in his Bumbo seat on the floor with his tray in front of him, and Juliet is playing with Anna and Sabeel (other residents in the ward) around him. His little face just lights up and he loves the attention.
Lots of love,
04-25-2005, 10:01 AM
Quote[/b] (Jackie @ Mar. 13 2002,06:58)]I love taking my son (Jay- 20 months) out for shopping and etc. He loves being outside. At first, I was so worried about all the germs in the world. But as the time went by, I realize Jay needs to be exposed to the world and that I can't keep him under my wings forever. When the weather is nice, we take the stroller out for a walk around the neighborhood. We take him to McDonald's, to the park and to shopping center. All babies are curious about everything. They want to see, touch and taste (yuck!!) and just because they have trach, I don't think we need to limit them on what they should do *^^*
I completely agree with this... Jadyn goes everywhere with us, for the most part. She needs the vent while she sleeps, but usually she doesn't fall asleep during the day, so I just take it with and leave it in the car. I bring her KidKart, "go-bag", suction machine... which is a lot, yeah, but we manage. Just pile it all on the KidKart and go in wherever we're going. I used to just carry her and the suction machine in, but she's getting too big just to lay in a booth, or in an infant seat of a shopping cart like she is a baby. I am really not overly paranoid about germs, and I've never been too hesitant to take her out, and I can say that Jadyn has not been really sick very often. Most of the time she'll get sick with a cold or something, but get no worse than any of the rest of us. She has her times, yeah, but I think any kid with a trach, lung issues, etc. does.
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