[SuzBerg]

I wanted to start a thread that might be helpful to others who might need it (now or in the future) for how to prepare themselves and their kiddo for a hospitalization, items to take, things to do, etc. So please share your experiences and if you have questions ask. I think this could be a benfit to a lot of us.

Here are just a few of the things I've learned in my journey so far (and this is by no means a conclusive list, I will probably post several times on this thread as I think of things).

1. IF your child sucks their thumb. ALWAYS make sure they put the iv in the OTHER hand (made this mistake only ONCE, believe me it was awful). A lot of times they will not put the iv in until the child is under anesthesia so you need to tell the anesthesiologist ahead of time.

2. Bring your own bandaids. I always throw a box of Barbie bandaids in Em's suitcaste. Nothing like having an upset little girl, because first of all the blood draw hurts and then all they have is Cars or GI Joe bandaids to put on her "owie".

3. There are lots of books that prepare kids for a hospital stay. In addition to Curious Georg, the Berenstein Bears, and whatever other charactar you can think of (they all go to the hospital ), there are books written specifically for kids and specific procedures. I have found great books for open-heart surgeries, cardiac-catheritization and even color books for pacemakers, as well as books for siblings fo cardiac kids. All these things have really helped my daughter feel secure and prepared for procedures/surgeries.

4. One of things that has been very helpful and comforting to me is having a web-site. This way we just type one update and our friends and family can go there read our posts, see pictures and even write encouraging messages. (caringbridge.org and carepages.org are two great sites for this purpose.)

I will keep thinking, I know there are lot more. Please post your ideas, hints, suggestions or even questions. I would love for this to be an on-going discussion.

[mrsred]

What a wonderful post. I pray i will never need it, but am going to print it out to save, just in case I ever do.
Thank you.

[devildogwife]

1-If they are able to wear clothes, be sure the onesie snaps, no zippers! Especially with a heart baby, there are just too many leds and probes and the cording can fit through the snaps really well. My son has been in just a diaper for 5 weeks.

2-Use your available resources. The PICU social worker has been a great help to us in knowing what benefits my son qualifies for. The chaplain, a great comfort.

3-Make your preferences known. For ex, my son is uncirc'd. I saw a nurse really retract his foreskin during a diaper change and was unhappy. I added to his care plan, no retracting. I also do not allow lab to be in my son's room without a nurse present.

4-Rest. You're no good to anyone if you're sick.

5-If you do come down with a cold, WEAR A MASK or consider staying home. Remember that you are around other children who may be VERY medically fragile.

6-Bring things that are familiar to your child; a doll blanket, slippers, etc.

7-If you have loooong stays like we do, decorate your child's room. My son's nurses love to see pictures of him being awake and smiling and healthy.

8-Remember that you are your child's best advocate and speak up if you feel something is wrong!

[SuzBerg]

DDW that's a great list and helped me think of a few more.

* Definatley bring their favorite blanket, stuffed animal, books, small toys etc. In almost every picture of my daughter at a hospital (and we have quite a few) you will see her blue blankie and her bitty baby. We take them both everytime we go to the hospital even if it's just for tests (cat-scan, bloodwork, x-ray, stc) or doctors appointment.

* Now that she is older Em usually helps me pack her suitcase. I let her pick the pj's and slippers and other things to take with us. (I also usually buy her a new, special pair for the hospital)

* For overnight or longer in the hospital, I usually make a small poster (11x17 size) with pictures and her name on it in big letters so everyone (docs, nurses, etc) who comes in her room will see that she is a happy normal kiddo and not just a sick kid hooked up to machines in bed. The pictures also include her brothers and grandparents and other people who love her on it. Last time she was old enough to help me make the poster and it was good project for us to work on together.

* There are LOTS of resouces available to parents, sometimes it's harder to find out about them then it should be. Make sure you talk to the social worker for things like Ronald McDonald House if you need a place to stay. Child Life Specialists are also extremely helpful and can make things easier for your kiddo.

* If you have a laptop - take it with you. Most of the hospitals now have free internet acess and it has really saved me to have that connection to the outside world. If you don't have a laptop most hospitals have a family resource center or other area where you can use the computer to update patient web-sites or send e-mails.

I'm going to keep thinking about this and post some more ideas. Anyone else with suggestions?

[specialk4b]

I'm making note of this thread for when M has surgery next month. He's also having ear tubes put in this month, but I'm not as worried about that one.