MotherWhimsey and the others have given really good advice.
I've been jotting down a few things, some of which are a little repetitive (so bear with me). Also, both of my son's brain surgeries were two-stage affairs, two surgeries over a few days, so the way he was after surgery may be different than the way your son will be.
As far as the nurses, I like what MotherWhimsey said. My best friend is a NICU nurse, and their jobs are hard. They get worn out, and emotionally involved, and the shifts are long...but still they're an amazing, caring, dedicated group of nurses. You'll be amazed by most of them. Yes, they will occasionally make mistakes--that's why you're there to watch what's going on. But what MotherWhimsey said is true...you don't want to give them the impression that they need looking over, or that they're not incredible at their jobs. Be friendly to them, if they seem like they're in a relaxed place shift-wise, make convsersation and ask for as many details as you feel like about the treatment of your son (you can ALWAYS ask, busy or not, but for the long conversations it's nice to wait for a down time). Nurses will be your greatest support and allies, and most of the nurses who work in NICU or PICU units are there because working with families is important to them. It's a special group of people.
Okay...here's my list of tips.
1. Brain surgery can cause some pretty alarming swelling in the face and body. My son James was so swollen around his forehead and eyes that we couldn't see his eyelashes (they were inside the swollen area). Don't be too alarmed if this happens. One thing you can do to prevent it getting that bad, or make it better when it happens, is to put your son at a slight incline (head up) after he stabilizes from surgery. Even a small angle helps. Ask the nurses in the PICU when it would be appropriate to tilt him, then keep him tilted until his swelling is gone (days). It really helps.
2. Stay on top of pain meds, and use a continuous cycle of Tylenol and Ibuprofen (rather than narcotics) if you can. This was one of our biggest responsibilities while in the ICU and especially after the ICU (when he was in the recovery part of the hospital). Nurses get busy, and sometimes they're late with the meds. Tylenol every four hours, Ibuprofen every six. Even if the fever hasn't spiked back up, because you want to stay ahead of fever AND pain. When your baby is in pain, he'll be agitated, want to roll, and it will mess with his monitors, his bandages, and his IV. Staying on top of pain meds helps a lot. Your doctors may want a different pain regimen, and that's fine, but stay on top of it. Try not to be more than a 1/2 hour late on any pain med dosage.
3. If a nurse bothers you, and undoubtedly at least one will, try to tough it out until the end of her shift....unless it's at a time when you really feel you can't handle it, then ask for a switch. One way to avoid this is to bond with nurses you like (and you'll
a lot of them), then ask if they can take your son on their shift the next day. Some nurses get so bonded with "their" kids and families, they'll try to get you on the next shift anyway.
4. Beeping. What a PP said is right....monitors will go off frequently. Ask a nurse for an explanation of it all, and ask what blood pressures, temps., etc. are alarming. It's good to know, because otherwise anything that looks remotely high is frightening. You don't have to sit and wonder in fear--you can buzz and ask. Also, watch the nurses and how they respond to the false alarms. Do they move a monitor patch back into position? Do they wiggle the IV tube a little? Is there a button you can press? Eventually you'll become VERY comfortable with what is an alarm and what isn't. Feel free to settle an alarm on your own once you're comfortable.
5. Temps can get HIGH post surgery. You won't believe how high fevers can get post-surgery, but it's okay and it's not long-lived. Being on top of the tylenol and ibuprofen from the start
will help, but the body gets a fever after surgery almost no matter what. With James' first surgery, one of the most frightening times was after the surgery and his fever went off the charts. I was terrified, and I didn't trust the nurses that said it was within a normal range--I thought they were just trying to comfort me. So expect a high fever spike--it may not happen, but being prepared helps.
6. Cut your fingernails short, and ask other caregivers (your dh?) to do the same. You'll be washing your hands religiously (everytime you touch a door, everytime you answer the phone, everytime you leave the room, etc.), but germs hide out easily under fingernails. Cut them short, and you won't have to worry about scrubbing under each nail when you wash your hands.
7. Shifts. We used three people to care for our son while he was in the hosp. Dh and I did 12 hour shifts at the hospital, and we had a family member at our house to help with our other child. I was responsible for days at the hospital, Dh was responsible for nights. I slept at the normal times, and dh came home and slept during the day. That allowed both of us to have time together (at the hospital) to communicate, and it allowed both of us to see our other son when we were home. The family member was there to be at home while dh was sleeping (during the day) and to cover us when we were in transit between home and the hospital. I know you'll be at a faraway hospital, but give some thought to shifts. And try, if you can, to always do the same shift. Your thinking stays clearer if you can sleep at a set time each day--even if it's in the middle of the day.
8. When you're at the hosp, ask about services--do they have DVDs you can rent? Cds to listen to in the room? Internet acess in any of the parent lounges or waiting rooms? These things can get a tired parent through a shift, and the internet access is good for reaching out to family and friends (and MDC
9. When your son goes in for the surgery, remind the nurses (gently) about his foreskin if he's uncircumcised. It sounds crazy, but often they'll retract the foreskin when they do the catheter for the surgery. Please don't flame me for this, but try to be forgiving if it happens--and check his diaper when you first see him post-surgery. It happened twice to my son, and it's because he just happened to be with nurses that were older and didn't normally deal with foreskin. Other nurses seemed astonished that it happened at all, but you never know. A gentle reminder, and a quick check post-surgery, will keep your son from painful swelling if it happens at all.
10. The IV. Babies are wiggly, and the nurses will have tons of ideas of how to keep IVs in and comfortable. Sometimes you can stablilize the area with a velcro board (called an "L-bow"). Sometimes, if the IV in the hand is too irritating, you can try putting it in the foot. And at night, when sleeping, don't feel bad about using restraints on the IV limb. They have super-soft restraints that you can tie loosely (to allow some movement). We ended up using them at night to protect the IV, and also during the day to prevent our son from itching the incisions (tied loose enough for him to play and move, but tight enough to keep him from reaching the top of his head).
If it's hard to get an IV in, ask for a transport nurse. They're really skilled at tricky IVs. And do what you can to protect the IV from being picket at, kicked, or pulled out. Getting new IVs can be easy, but it can also be traumatic.
11. Breastfeeding. Pump to keep your supply up. When your son is recovering, and cleared for food, his swelling, monitors, etc. may prevent you from holding him (though you'll be right there to touch and caress him). We always started feeding him breastmilk by syringe for a day or two. It's nice because he can stay comfortable in bed, and it's nice because you can keep track of how much milk he's getting (and then reduce his IV fluids by that amount, eventually!). Also, with the curtains closed, I'd sometimes lean over and let James nurse while he was lying on his back. It was comforting for him.
12. Arrange a phone tree now, so you only have one or two family members to call and give updates. It can get exhausting, telling people the same news, the same emotions, and also dealing with their emotional reactions over and over again. Best to have a friend, sibling, or parent that you can call once a day or less, and they'll call around for you. Make sure that person isn't alarmist or too emotional--that can make for some scary phone trees!
13. When your son is cleared for food, ask the dr. or nurses to allow all foods. That way you can save money and order most of the food on the tray for yourself. Since you're breastfeeding, most hospitals will support and encourage this. Hospital food is expensive!
14. Getting OUT. Some of the best advice we received was from a dr. who came to see us a couple of days after we were out of the ICU, but still recovering in the hospital. She said "the next time I see you, I want to see him wearing street clothes, sitting up in bed (bed propped up), or strolling around the halls in a wheelchair or buggy." First impressions are important, so when a doctor sees a baby still in hospital garb, lying flat in bed, and not doing much, the doctor is going to think "baby needs to stay for a while." If the doctor comes into the room, sees cartoons on the TV, hears laughter, sees baby in clothes, or sees that the baby has been out and about (eating in a highchair, being carted around, etc.), then doctor thinks "this baby can go home!" It's amazing the difference it makes....and believe me, you'll be ready to go home before the doctors think you are, and checking out takes FOREVER.
: Okay, now for the to-bring list:
1. Notebook and a few pens. Jot down the times of all medicines when they're given, why they're given (if your dh needs to know), etc. Also write down the times of doctors visiting, and the rough outlines of what was said. Also write down questions you WANT to ask certain doctors when they come back next shift. Nothing is more frustrating than how easily you can forget the important information. Plus, when you're taking care of your son in shifts, the notebook allows for pretty seamless communication between you and your dh.
2. Snacks, including caffeine. Those frappucino things are great, as are granola bars, dried fruit, sesame sticks, etc. Anything that won't spoil. Ask about a fridge--sometimes they have one nearby for patient families. The caffeine is good for long boring shifts--sometimes it's hard to stay focused, and the hospital will drain you of energy and alertness.
3. Buy four boxes of chocolates (or some other nice, but easy on you, gift) and four simple thank you notes. These are for the nurses, and believe me--you'll be wanting to do something nice for them.
Night shift nurses are often the ones that don't get the nice treats, so with four you'll have boxes for:
ICU dayshift nurses
ICU nightshift nurses
post-ICU dayshift nurses
post ICU nightshift nurses
And by all means, buy a box of chocolates for yourself.
Last time the post-ice dayshift nurses didn't get their own box because I raided it during the stressful ICU stay.
4. Bring a few books and DVDs for yourself. You'll have time for reading while your baby is sleeping and while you're in the waiting room. Also bring his favorite books and some DVDs for him....he's going to be bored and kept from moving, and whatever your view of baby einstein or Ralph's World, they're *marvelous* things for a hospital stay.
5. Bring some of his favorite toys, toys that he can interact with without a lot of movement (push-button musical toys, for example....my son's Mozart cube was a lifesaver), his favorite blanket, and cds of lullabyes and songs that you can sing with him. We did a lot of singing to keep him happy and keep him in bed!
6. Have a bag of deoderant, toothbrushes, snacks, and a fresh change of clothes that stays at the hospital. That way it won't get forgotten back at your homebase, and if you get a little stinky on your shift, you can freshen up. And the change of clothes is important....kids on meds, recovering from surgery, etc. will sometimes vomit. Nothing is nastier than having to wear vomitty clothes (though you can ask for doctor scrubs). It's also nice to have slippers at the hospital.
7. Pictures of your son. Bring them and tape them to the head of his bed, or the door of his ICU room. Nurses and doctors will love to see them, and they'll remind them (and you!) of what life is normally like for this dear little boy. Sometimes the pictures I brought of James, and our family, seemed SO important to my emotional well being....I'm really thankful that I could look at them and remember the good times during the struggle of the hospital stay.
8. Do you have one of those trendy pillows with all the micro- stryofoam beads in it? The squishy, formable ones? If you have one, they make great head supports for kiddos post surgery. Put a hospital blanket over it (for sterility), and it's MUCH more comfortable for head positioning than rolled towels or wedges that the hospital has. You might use it, you might not, but it was nice for us.
9. Street clothes that can be IV-accessible. Pull-up cotton pajama pants (or any pull-up pant, but ones without pockets/buttons/seams are more comfy when you're on your butt all day), button-up shirts (things that don't need to go over the head. They're nice to have when your son is out of the ICU...no matter what's going on, a baby wearing familiar clothes just looks less sad than a baby wearing a hospital gown.
Plus it's fun to get them OUT of hospital garb, and start dressing them again.
I think that's it! I'll come back if I think of anything else...and ALWAYS, ALWAYS feel free to PM me. I'll be thinking of you, your family, and especially your little one. It's going to be okay.