[mommamarci]

Hey all,

We have our first hospital stay with Cameron in less than 2 weeks. He is getting a cardiac cath. We should only be in the hospital for a day and a half. But he will be having open heart surgery in the next couple months, so that will be a longer stay.

So, what do I need to know? What should I bring? Aren't hospitals usually cold? What clothes should I wear? I have never been hospitalized and have never stayed with anyone. (I, of course, have visited people in hospitals, but for a few hours or day, never longer. I just have no clues here.) We are planning on my mom watching the baby, but she will bring him with her when she comes for the actual procedures. Is it usually okay to have a baby in the waiting area? (He is a great baby that never cries and we will have several people there to hold and care for him.)

Any advice you can give me would be greatly appreciated!!

[Vogi2002]

Just read this Marci...I have NO idea but wanted to give you a big old Hug. I'm so sorry you have to have surgery & will be sending prayers your way.

Send me a message if you need to chat / vent!!! I almost did you the other day because I swear I was going to run away after a LOOOOONG day with C (the older C LOL)

[meshsgrl]

From one who spend more time then not in the hospital from 2004-2007.... but with an adult not a kid, here is some advice.
hospitals are always cold, bring a hoodie etc.
find out about calls, maybe bring a calling card
sweats and tshirts are the most comfy...
I wore flipflops most of the time... but thats just me!!
a cozy blanket was always nice
find out about vending machines, or cafeteria... you might need quarters
I taught myself how to knit and read almost the entire local library, hospitals are boring, so take entertainment

Waiting rooms are no fun, but I dont see a problem with having a baby. the more people the merrier!!

Most important of all!!! DO NOT BE AFRAID TO SPEAK UP FOR YOUR CHILD... nurses do make mistakes, they are human too.... be polite but firm it will get better care for your loved one!!

[momraine]

I always like to bring my own pillow. I usually live in sweat pants at hospitals, it's just more comfy. Remember that what you sleep in will be seen by various hospital staff, there is no privacy. So if you don't sleep in a bra but don't want to be seen without one, maybe get a sports one or something. Some of the hospital personal may be men. So be comfortable, but decent. You also wont' get a lot of sleep, so if you are close to home and have someone willing to stay with him for a couple hours for you to go home and take a nap in your own bed, do it. For sure bring books, crossword puzzles, or whatever you like to do to kill time. Also bring some healthy snacks for you. When my dd had her first surgery she reacted badly to the medication and I did not feel I could leave her. I was living on cheetos and coffee which I could get from the vending machine. Our pastors wife brought me a basket with fruit and granola bars complete with a plastic knife. That was the best thing! I had not thought that I might not be able to go down to the cafeteria. The only meals I ate where when dh could come visit and bring me something, but since the hospital was two hours from home that was not often. I will also second the speaking up for your child. It's a good bonding experience if you do as much as they will let you do. I was shocked at dd's last surgery when the nurse asked me how involved I wanted to be in her care. I was like, duh, it's my kid! Yes I want to be involved in every way possible! It seems some parents don't.

[mommamarci]

Thanks guys for the hints so far. Keep them coming.

We will be staying on a pull out of some kind in Cameron's room after the cath. Do you think I will have access to a shower??

The social worker is supposed to call me, so I will ask some of these questions then.

Oh, and I live 4 hours from the hospital...

[SuzBerg]

Marci - I've been working on this for a while (a freind told my I should). It's not finished but here's it is:

Suz’s Helpful Hints for your child’s stay in the Hospital J

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 character 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-catheterization and even color books for pacemakers, as well as books for siblings for 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 actually post in it even when Em isn’t in the hospital, as it is pretty much the only journal I write in regularly.

5. 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. ALSO I always take a blanket (Just a small one - we have a fun purple fleece one) I use it on waiting room couches etc, and I like to use it instead of/in addition to the ones the hospital provides when she is in a room (out of ICU or recovery)

6. 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)

7. 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.

8. 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.

9. 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.

[mommamarci]

Still no call from the social worker, but I did the paperwork in the mail from the hospital today. They sent us a sheet about the cath procedure. Only problem: you can tell it was written with adults in mind. (Like you need to lay still with the leg flat for 4-6 hours. If they can get a 2 year old to do that without sedation, they will be my new hero!) It also had the time for the procedure. My poor baby cannot have anything to eat or drink after midnight and they are not doing the cath until 11am. He is going to be such a grouch! Why would they make a kid wait that long? Luckily we are on different time, so it is 10 our time. A little better, but still not good. Oh well. We will get through it some how.

[SuzBerg]

Marci - My daughter has had to lay flat after a cath - it is not fun. She's older now so she understands and can watch a movie etc. Plus she's kind of "out of it" the first couple hours (at least) while the anesthesia wears off. When she had a cath at about 2.5 I know they put a leg splint on her so she couldn't move that leg.

[Robbin]

If you have a portable dvd player, that works great and helps with the sitting still. They cost about $100 at Sears, but I know you can get them at Walmart too.

I know that I was a ROYAL pain in the ***, but everytime a nurse came in with meds, I always asked What are you giving him? What is it for? The RN's were probably ready to choke me, but, hey, my job is to advocate for my child, not win popularity contests.

Once the nurse was EXTREMELY "huffy" because I questioned the medication and its side effects and inquired if the doctor who ordered it was aware of another doc ordering heart tests. She said "well do you want him to get this or not?". I said NO, not until I know that the ordering doc is aware of the possible heart problems and the warnings of this drug. She was NOT happy.

Another time, my son's dad talked to the doc and didn't ask him the questions I told him to or get the outcome I wanted(I had run home to be with the baby for a short time). When I got back to the hospital and found out he didn't get the answers I was looking for, I hunted down that doc who said, Oh, I already talked to Dad and he is okay with what we are going to do. I said, Ok, even though Dad is a 6foot 4inch tall, 250 pound black man with dread locks from the South Bronx, New York, HE is a total marshmallow compared to ME! You and I are going to talk and I expect you to give me what I request (a pediatric neurological consultation on a skull fracture...not that far out of the realm of reasonable if you ask me!).

Nowadays, my hubby and my kids' dad just look at the nurses/docs with sympathy and say Good Luck with Her, and run out of the room. They know that I am a very pushy advocate for my kids.

I am not saying, though, to be rude or inconsiderate, or thoughtless to the nursing staff. I try to be as helpful and kind as I can. But if the choice is making them happy or getting my kid what he/she needs...no contest.

[jessnboys]

I have spent more time in the hospital than out of it I think I usually bring enough meds from home b/c the hospital doesn't always have ready access to some of the more obscure ones we are on. I bring pic's of everyone/everything from home. Blankies & babies go over well. There are usually volunteers that walk around or pet therepy on certian days. Our stays tend to drag on a few weeks tho.. For me, I bring teabags & my own cup. Slippers (I had funny animal ones to make M laugh) and a book(or 5), a phone list b/c it never fails that you will forget an important #. Good luck. Hope all goes well!
oh, and I found the nurses will be your best friend when you have good ones! They usually understand that this is YOUR CHILD, not just another kid in a room.