Does everyone take their child out?

Gretchen(Celia's mom) · #1 03-12-2002, 04:08 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?

? Gretchen(Celia's mom)

Jimmysmom · #2 03-12-2002, 10:06 PM

Hi

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

Lily's Mom · #3 03-13-2002, 08:16 AM

Hi,
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)

#4 03-13-2002, 02:20 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.

Heather

cbissell · #5 03-13-2002, 02:25 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!

Gretchen(Celia's mom) · #6 03-13-2002, 08:40 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!!!!

#7 03-19-2002, 12:44 AM

Hi all,

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.

Peter

Olga · #8 03-19-2002, 05:18 AM

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).

Gretchen(Celia's mom) · #9 03-19-2002, 10:05 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

Mom2TwinsPlus1 · #10 04-23-2005, 01:55 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.