BASIC TIPS printable version
+ALWAYS keep a working question list handy. Any time you think of something else you want to add, add it! Then take the list of questions with you to your appointments, and write down the answers. We bombarded my surgeon with questions every time, and he was always willing to answer us, and the answers always proved useful.
-length of hospitalization
-ventilator/breathing tube-how long?
-how long before you start turning screws?
-how fast are you going to turn (mm/day)?
-How long will you be turning?
-will any hair need to be shaved?
+Relax, and do something fun (but safe) the day before the surgery to take off the stress.
Worrying won't help anything (though that is 100 times more easily said than done). Just pray, and leave the rest up to God.
+Eat something chewy! After the surgery, you won't be chompin' on pizza for a month or so, so enjoy it NOW!
If your surgery is in the early morning, that's the best thing, because you're not allowed to eat anything before the surgery. If your surgery is in the afternoon, then stay up kind of late the night before, and eat a snack too. That way, you can sleep in closer to the time of the surgery, be less hungry, and have less time to worry.
IF YOU HAVE A LATEX ALLERGY, REMIND EVERY PERSON THAT COMES INTO YOUR ROOM AT THE HOSPITAL TO MAKE SURE THEY KNOW. You'd be surprised at how many items used there contain latex.
Let's face it, you'll be asleep. Just wait to wake-up! Parents: Stay close by, but don't worry too much. Stay near a phone, because they may give you hourly updates. Try to occupy your mind a bit by doing something, (my friend's mom made sushi). Take comfort in the fact that God is in the operating room with your baby. One other thing: DON"T WATCH SOAP OPERAS!!!! In case you didn't already know, in every episode of every soap opera, someone ends up in the "hospital" which appear to have been filmed in one of LA's 5-star hotels. These are rather depressing and can bring on alot of anger, especially when someone you love is in surgery. Stay away from them.
Waking up could be the worst part, but it doesn't have to last long. You'll probably wake up with a breathing tube in. I hate these, but I've found that the best way to deal with it is to relax and let the machine do my breathing. If you try to control the machine, it will probably backfire on you. Hopefully, they'll start to wean you off the ventilator within the next day, but I know that that's not always possible. Just try to relax, and remember that it will come out eventually. There's really not much you can do to make it come out any quicker, except for doing as the doctors say. Since you can't talk with it in, you may have to write notes or play some charades to communicate. If you get hot, pretend to fan yourself when the nurse comes in (to let him/her know you're hot, etc.)
TIP: Whatever you can do to show that you are conscious and alert (when you really are conscious and alert), do it. When the nurses saw that I could write notes to my mom, they knew that it was time to start weaning me off the machines.
Depending on your hospital and your condition, you may need an feeding tube through your nose. I didn't need one, but I've had them after surgeries when I was a baby. I've been told that once they're put in place, it's not very uncomfortable, so don't sweat on that.
Since the patient can't talk, PARENTS, MAKE SURE YOU PUT A LARGE SIGN ABOVE THE BED MAKING IT CLEAR THAT YOUR CHILD HAS A LATEX ALLERGY (if there is an allergy).
While you're in the 'turning period', you may have some achy pain (not like a sharp pain, more just a constant muscle ache). So if you need pain medicine or a stronger pain medicine, tell your doctor right away. My surgeon was able to get me a stronger medicine, and that really helped.
These are some products that helped me through this time.
-A Wedge Pillow keeps your head elevated, which reduces the pain from gravity (at least, that's what the nurse told me).
-A Tiny Pillow can fit on the back of your head so that the hardware that sticks out the back of your head doesn't press into the bigger pillow, thus hurting your head even more!
-You could also try a Neck Pillow (the kind you use on airplanes), which goes around your neck and holds your head up, without hurting your RED. This has worked for other people.
-Baby spoon (see food and diet page for how to use)
-Syringes of all shapes and sizes (ask your nurse for some to take home).
-A Mini-alarm clock was kept in my dad's pocket at all times. It would let us know when to turn the screws so we never missed a turn!
-Socks loosely stuffed with lentils (or any other beans or rice) make very good microwave heating pads. They are small and moldable so you can slide it under that RED.
-Sports Water Bottles These water bottles are the kind that football players use because you can squirt them upright. They have a bendable straw that can go right into your mouth, but you don't have to suck the water out. Since it is impossible with a RED on to close your mouth completely, you can just squeeze the bottle and the water squirts into your mouth. Available at Big 5 Sports.
-Blender This is a necessity for pureed foods. Miniature blenders work the best because you can puree small amounts of food without having to wash a huge blender.
-Water Pick helped in keeping my teeth and gums clean as well as getting rid of some germs that could've caused infections.
BOTTOM LINE: It will take some experimentation to figure out what works the best. To save money, ask the hospital first, sometimes they'll give you some things. You don't need to shop in medical supplies stores. You can probably get better bargains at Kmart and Walmart since most of these are every-day products.
DID YOU HAVE OTHER PRODUCTS THAT WORKED? Tell me so I can add it on!
Stuff to do when you're bored:
You probably won't be able to focus well because of the bar that runs in front of your eyes. -But you also might be too uncomfortable or tired to do anything productive. My remedy: MOVIES! Okay, so movies aren't the greatest for you, but your only goal at this point is to get better, and keep your mind occupied. Here are the best movies I've watched (I watched alot of them,
but these are the BEST ones)
MOVIES I LIKED:
Chicken Run G
101 Dalmatians G
102 Dalmatians G
Parent Trap (old version) G
Toy Story G
Toy Story 2 G
Monsters, Inc. G
It's A Mad Mad Mad Mad World G
Parent Trap (newer version) PG
Ever After PG
Remember the Titans PG
Father of the Bride PG
Father of the Bride II PG
George of the Jungle PG
Star Wars PG
A Walk to Remember PG
Yes, there were some farely entertaining PG-13 movies that I watched, but I am not going to endorse them because of why they did not recieve a more innocent rating. To me it is sad, but true that the film industry doesn't realize that those movies would be just as entertaining, if not better without all the junk.
MOVIES I LIKED AS A LITTLE KID:
Sound of Music*
The KIng and I*
Oklahoma* (has some "scary" scenes for younger kids)
Carrousel* (has some "scary" scenes for younger kids)
Books were a strain for my eyes, but I really liked magazines, since the articles are shorter, .
One other suggestion is to buy or check out the recorded books. If you were like me, your eyes won't really be in the mood to focus on little words, so let your ears do the work instead. You can get novels that are recorded onto tapes, and those might work too.
Snail mail was MUCH more fun to recieve than email. It gave you something to look forward to open, and you didn't have to deal with the glare of the computer (writing my emails was such a pain!). The Ronald McDonald House says I made the record for most mail recieved! The trip to the mailbox really was a high point in the day.
I am not a doctor. So therefore, I am not stocked with doctorly intelligence. This site is not a medical site, it is only a personal website I felt like posting because I wanted to help people get through all this medical stuff. If you know that any of this information is not true, then please let me know. I am not responsible for any bad things that happen because of this website (such as you choking because you are so amazed at how absolutely thrilling this site is).
Please contact and recieve my permission before posting the contents of this page elsewhere. You may do this be signing the guest book. Thank you!