Cabin fever

[hcs_mom]

Well, we have spent all of our spring and summer indoors. Hannah's reactive airway was so touchy, I didn't dare take her out. Now, she seems to be adjusting better to weather changes...of course, right at the start of the cold/flu/RSV season. Ugh...

I was just wondering how much you all "go" with your kids? Hannah came home back in January and was rehospitalized in March for pneumonia and pseudomonas. I am *terrified* of her getting sick...especially with ENT saying if we had a good winter that we could do the LTP in the spring. But, we are all so tired of being in the house. And with the holidays coming...I'd really like to be able to introduce Hannah to the family, but I'm not sure how cautious to be.

My fear is that I'm being overly cautious and sheltering her from the world. Basically, her only outings are to the doctor. We don't go anywhere...and it can make for very lonely days.

I guess I am tired of living in fear of illness and ready to show Hannah off to the world and let her explore. She is still on oxygen, so I guess in my head, I'm thinking that her lungs are still not as strong as they should be. We are also in the process of getting rid of it.

I was just curious about outings. Not the best time of year to be exploring though, is it? http://www.tracheostomy.com/iB_html/non-cgi/emoticons/confused.gif

Thanks for your input.
Jennie

[Nate's Mom]

It's so hard to know how to handle this! We were told not to do much "socializing" last winter-- and we really didn't. But the family and our kids definitely need to get out! We take Nate for walks in his stroller, which he loves. Our older girls play softball and my hubby plays soccer, so when the weather is pleasant, Nate goes to games. He also goes to some close friends' houses and our family's. We do take Nate to church with us and this summer we started taking him to the nursery. I know that's probably controversial to have him near all those kids, but we have several nurses that help in the nursery and Nate just plays on his own little blanket kind of away from the rest of them. I'm thinking this winter we might stay away from the nursery though.

I just couldn't shelter Nate and it's important to us that our family lead as normal a life as possible. He's had a few illnesses but nothing severe and hasn't been rehospitalized (knock on wood).

I'd suggest taking it slowly but making some short trips out. It's really good for the whole family. And our kids need to experience their world!!!

[Momi2AntnJadyn]

I take Jadyn out wherever we go, pretty much daily... to the grocery store, out to eat at a restaurant, or whatever... she doesn't really get sick any more than the rest of us do... obviously, sometimes she'll come down with something a little harder, but for the most part she doesn't. She also has reactive airway issues, and if she goes into one of her attacks in public, I do the same thing I would do at home... and just make sure that we are not out ALL day so that she has time to be on some humidity other than an HME. She is also on oxygen and needs a vent while sleeping, but we just pack it all up and go LOL.

[cariaad]

We spent Alli's first year and maybe a little more staying inside with her and limiting visitors. It helped that she's an only child. By the time we felt secure taking her out her immune system was stronger andf the weather was fair so it all worked out for us. Mike and I did get stir crazy, and we took turns getting out by ourselves. It was a little strange, but it paid off as Alli is now quite healthy and goes everywhere. Deb

[Jacob's Mom]

We try to take Jacob out as much as possible. Now, his first year we didn't go out much, but I just realized that his immunity has to be strengthened somehow and it wasn't going to happen living in the same environment 24/7. The hardest part for me now is doing it all alone - carrying him and his equipment. My husband works quite a bit, so it is usually only on the weekends that Jacob actually goes somewhere. I take him for walks and to my mom's house frequently.

As for getting sick, he does just like the rest of us. His illnesses just involve more diligent care - more frequent nebs, more time on the vent, etc. But it is worth it to be able to take him out more.

[Stefan & Jennifer]

We pretty much take Jake everywhere, with some precautions. I take antiseptic wipes along to wipe down any high chairs we borrow from restaurants--and also wipe down the table where he will be putting his hands. I also clean his hands frequently, sometimes with hand sanitizer, when necessary. Our friends are well trained and tell us when one of their kids is sick, so we don't take him over there during those times.

It is rough when he is sick, but leading a more normal life is definitely worth it.

[abby]

I dont take Jared really anywhere other than apts! We go for walks outside alot and to my parents house for a change of pace but otherwise, I stay hibernated. I know Im probably overly cautious but meanwhile, he hasn't been sick once (knock on wood) since discharge (other than a little viral something that was minor). However, Im getting daring and plan to bring him out and about for Thanksgiving. I will make sure no one is sick who is around him but that will be my only big outing till spring. Like you jennie, we are hoping for ltp come March so are afraid to chance anything!

[Rachel0806]

Every child is so different it is hard to compare them. Claire has no lung issues. She was a full term, strong baby with no airway. So I take her everywhere. You have decide what is best for you and your child.

Rachel

[LeslieML]

I guess you could say we sorta cheat. We have nursing on the weekends and that is when we do our grocery shopping. Two weeks ago we ended up with no nurse on a Sunday, so we took Chris (9) and baby Chase to the Village Inn for breakfast. He LOVED it. We then went and visited the NICU for old times sakes and he did fine after coming home.
We aren't on the feeding pump during the day anymore so that helps. Of course I had to deal with the stares but I make myself believe it is because he is so dang adorable.
We just adjust to his schedule. We take him for walks (or "carries") around the block at night with his HME on and he loves it, especially at night when the stars are out.

[Carriestockmal]

I think you have to do what is within your comfort level. I do that and I also use the risk vs benefit comparison.
Jack spent a year in the hospital and we spent the first year completely isolated. Iwouldn't even go near him if I had a hint of a cough. Once this past May hit - we've been absolutely everywhere with him - resturants, grocery store, mall, friends, family, etc. The benefit to getting Jack out has been enormous. We called it jokingly - the summer of socialization - but in reality - Jack has come out of his shell.
Now that the fall is here - I can already see us getting more cautious - for instance, I flat out ask people if they are ill before they go near him. But, I also have lightened up a bit since last year - I'll have him in the same room as a sick person (as opposed to last year when I would not go if I knew there was someone sick attending) , i just won't let the sick person near Jack.
I learned a really big lesson that helped me last year - sadly, to late. Father Mont, the priest that married my husband and I and all of my husband's siblings and baptized Jack and all of his cousins was visiting my mother in law's house last year. It had been a few months since I had seen him. One of Jack's cousin's was sick and I panicked and we did not go. Father Mont died 2 days later. I learned that I can't let fear run my life. I just need to do everything I can to make sure Jack is as healthy as possible, but we (GLenn Myself and Jack) all have to enjoy our lives - or else why did we fight so hard??
I don't know.... that's my 2 cents.. hope it helps in your decision.

[Whitney]

Hi,

This is a tough subject. Â*Alex was discharged from the NICU last November and we spent the next 6 months in seclusion. Â*We only took Alex to the doctor appointments (and I made sure we were either the last patients or the first ones). Â*We went straight to the room and did not wait in the waiting room. Â*I would wipe everything down and make sure everyone washed their hands. Â*Last May, we started to take Alex and Aidan out some. Â*We go to restaurants and the grocery store. Â*We also have been to the mall. Â*With the cold season approaching again, we have decided to go into seclusion one more year. Â*We will not be as strict as we were last year, but we will take things in moderation. Â*We work 2nd shift so we can do a lot of our socializing in the mornings and afternoons before it gets too busy. Â*We still will be very careful when we go to doc appointments. Â*I want to be more like other families and I don't want to spend all my time inside the house. Â*We take the boys out for walks too. Â*I didnt work last winter but I will this year. Â*Personally, that will help me. Â*I went completely stir crazy last year. Â*As for the boys, they really enjoy getting out and checking out the sights. Â*We will keep taking them out some, but only on special occasions. Â*They just got their Synagis and Flu shots so I feel they are somewhat protected. Â*Alex and Aidan have only had mild bugs since their NICU discharge and the seclusion has helped Alex immensely. Anyway, its a personal choice and honestly either choice is right.

Whitney

[Seth and Hannah's Mom]

The first 2 years that Seth was home, we stayed home a lot too. Now he goes everywhere even to preschool. I will tell you that he doesn't get sick anymore than my daughter does now. Use your own discretion. That said, sometimes just getting out for a ride does the whole family good when we are feeling cooped up!

[christyw]

We were pretty careful during Gaithy's first year home - which was her second year of life. It paid off apparently - she was never sick. Once we started to have ventilator sprints, we started going to Wal-Mart and we took her all over for Christmas shopping later that year....she started to have some sickness. It's inevitable that she will come into contact with germs, but you don't want to press the issue if she is still really compromised respiratory-wise. Gaithy has had a lot of sickness that has increased as her interactivity level increases. After awhile, it's totally worth it - they have to experience life! I'd just take it slow at first. I know that you'd rather have a well baby at home, than a very sick baby in the hospital. If there is ANY WAY for you to get out, or you and your husband or something, then that might be great. We tried to go out once a week, at night, back then. It was really nice.

Christy