Brain Surgery Wednesday - Tips, Prayers, and Love Needed - Mothering Forums
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#1 of 71 Old 07-26-2007, 12:49 PM - Thread Starter
 
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Hello Mamas. I've come again seeking advice and support. The day is almost upon us. My 9.5 month old son, Finn, will be going in for brain surgery this coming Wednesday, August 1st. We fly from Seattle to Phoenix on Sunday evening, meet with the neurosurgeon on Monday and then on Wednesday he will have the surgery.

Here is a link to my son's website that explains more about him and his condition.
www.amazingfinn.com

Several of you have already given me so much support and sage advice. Thank you. If anyone has anything else to add about what we might expect when it comes to surgery and recovery in a hospital, I would be very appreciative. I know all kinds of surgery are different and each hospital is different as well, but if you learned any 'tips' during your experiences, I would love to hear them. And are all babies/kids given steroids after major surgery? I keep hearing about the side effects of these. Any other thoughts on intubation, IVs, breastfeeding, sleeping, befriending the nurses, etc. We have been told he will be in the hospital for 3 - 7 days. He will be in the pediatric ICU of St. Joseph's Hospital.

Please keep Finn in your prayers and thoughts. He needs lots of healing love and positive energy for next week and the days beyond as he recovers. Please picture a VERY successful surgery and healing process.

Thanks mamas! Your encouragement means so much to me.

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#2 of 71 Old 07-26-2007, 12:58 PM
 
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and I will continue to keep your son in my prayers.

I found it helpful to bring a small cooler of drinks and snacks for the waiting room when my son had surgery. His were always out patient surgeries but they did take up the better part of the day. I never left the room where I was to wait until I was brought news about my son (looking back a bathroom break would have been fine but I'm the nervous type sometimes).

My son was given antibiotics after one surgery but not any of the others. I was able to breastfeed him immediately as I was brought to him. He did not vomit my breastmilk. When he had an IV it was hard to keep it in because he wanted to pull them out but he was older than your son; I just nursed him in a way that he couldn't reach them.

Most nurses are very nice esp when dealing with babies.

Sincerely,
Debra, homeschooling mom of 4 ages 10 1/2 (AS), 9 1/2, 7 1/2, and 4 (Apraxia, Dysarthria, HFA)
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#3 of 71 Old 07-26-2007, 01:42 PM
 
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Make friends with the nurses when possible. They are the ones who will be there to help you, and they can really support you in dealing with the docs.

Dd has been given antibiotics after all her surgeries and she generally receives a stress-dose of steroids as well, but I know this varies from child to child.

The ICU can look and feel pretty frightening and you may not be able to stay overnight right with him, though most hospitals have some sort of parent room where you can sleep. Ask lots of questions about what you can do for your ds -- can you touch him in certain spots? change diapers? that kind of thing. Depending on his recovery, he may not be able to nurse right away, so ask if they have a pump (and a place to use it) if you don't have your own.

And I know this will be hard, but please, please, please take some time to get out of the room -- even if it's a five minute run to the coffee machine. It's an exhausting experience, and you will need some energy to help him with his recovery once he gets home. Take care of yourself, and you and your family certainly are in my thoughts and prayers.
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#4 of 71 Old 07-26-2007, 01:55 PM
 
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The cooler idea is a great idea.

As a nurse, I can tell you it irks me that you even have to *think* about how to "make friends" with the nurses when your BABY is having BRAIN SURGERY, but that's another thread...

If you want to befriend the nurses, a surefire way is food. Most PICU nurses are good and will be helpful, fortunately.

Steroids can depress immunity and decrease healing ability, BUT they are necessary to help prevent intracranial swelling that may happen after surgery. I think you continuing to bf will be great. Bring your own pump for backup, but when you get to the hospital, one of the first things you should do is arrange for a breast pump and get pumping and storage supplies. Most hospitals provide free meal coupons for NICU and PICU breastfeeding mothers, ask about that, and if yours does, take advantage of it. You may even want to meet with the lactation consultant, she can help you too. Hospital social workers can provide things like taxi vouchers and grocery vouchers if you need to go get food or supplies. Ask about parking validation too, as parking is expensive at big hospitals all too often.

Make sure you have your cell phone charger with you, and get some of those prepaid phone cards to take with you as well. How long will he be inpatient? Will you need to contact the Ronald McDonald house? Bring books and magazines and crossword puzzles...earplugs if you're a light sleeper (I can still hear ds through earplugs, but they block out all extraneous noise for me).

ITA with the advice to leave the PICU, even for just 5 minutes to get some fresh air.

I'll keep Finn and your family in my prayers.
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#5 of 71 Old 07-26-2007, 02:08 PM
 
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Just sending you love and support and prayer for a successful surgery and fast recovery.
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#6 of 71 Old 07-26-2007, 04:49 PM
 
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Echoing PP that prayers are coming from us for successful surgery and speedy recovery!
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#7 of 71 Old 07-26-2007, 07:55 PM
 
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Just wanted to add my prayers and positive thoughts for you and your little boy. Our son has had several surgeries, although not brain surgery, and all of the nurses at each hospital were very helpful and supportive. I asked tons of questions in order to understand his medications, procedures, etc. and always asked how much care I could do myself for him (changing, bathing, feedings, any of the "routine" stuff) after his surgeries. It really helped me feel like I was doing something, since the waiting is soooo hard, both during the surgery and during the recovery if it is a more lengthy recovery. It is more restrictive in the PICU due to the need for higher levels of care (our son was chemically sedated for a week after one of his surgeries and that was a pretty tough week, especially since there was little I could do for him directly) but the nurses were always great. Some hospitals also have a family room where you can find books for free to read and access the internet - I used those regularly for short little breaks, which helped with my sanity during that one long week in the PICU especially! One hospital also had a pager system where you could take a pager with you if you left the waiting room during surgery, such as to get some lunch or whatever. That really helped ease my anxiety about leaving the room during the longer surgeries, since I knew they would contact me if I needed to come back for an update.

Best wishes for a very successful surgery and speedy recovery!

Mamma to three boys : We love :::
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#8 of 71 Old 07-26-2007, 08:07 PM
 
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I will be praying too.

Rachelle, mommy to 8 year old boys! 

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#9 of 71 Old 07-26-2007, 10:00 PM
 
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God bless you and your entire family-- you will be in our prayers here, too.
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#10 of 71 Old 07-26-2007, 10:42 PM
 
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I'll be thinking of you guys this week. Here are a few things I've learned in our hospital stays:

1. the heart monitor will beep a lot. a lot. it's not always the real thing. So don't flip because of the heart monitor beeping. They'll come flying to his bed if it's really a problem. You will wear yourself out if you focus on it (and it's easy to since there's not always a lot else to do).

2. take breaks. Especially during the rough first few days. If you don't, you will eventually crash and become an emotional wreck for a little while. So whenever I feel myself getting weepy (and you will, it's hard to see your kid like that) I get someone to stay by him (nurses can do this most of the time if you don't have anyone else) and I go down to the bottom floors and go cry outside. Don't worry about what everyone else thinks of you, do what you have to. I've wept in hospital elevators with other crying moms too, so you're not alone, there are lots of other people that understand.

3. Do not be afraid to ask for anything.

4. speak up, if you think something is wrong medically, or looked over, or just messed up in general, it can never hurt to ask for lot's of clarification. This can save a lot of greif.

5. keep track of what meds he's on, when he gets them, and ho (oral or IV or tube). I've caught a few med mistakes. It's easy to keep a notebook (our hospital had a dry erase board in the room) and jot down what he's getting when, then just ask when someone approaches with meds. Don't feel like you can't ask, it can be intimidating at first (I never wanted the nurses to feel like I didn't think they were good at what they do. They are, they're human though. After someone tried to give him meds orally (anything he swallows goes into his lungs) I got over it.

6. when you are allowed to, get out of your room in a wagon or something. Our children's hospital has these big red wagons, we put pillows and blankets in the bottom and roam the halls. This has always done wonders for Linden's mood.

good luck!
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#11 of 71 Old 07-27-2007, 02:48 PM
 
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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.

RedOak ~ Momma to DS (8) , DS (4) , DD (3) , & DD 9/10 ~
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#12 of 71 Old 07-27-2007, 05:17 PM
 
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OMama-
I will keep sweet Finn in my prayers. Sounds like you've gotten some very good advice.
I will be thinking of you both.

Mary

[FONT="Tahoma"][B]Mary:::, mommy to Devon girl: 3.30.2006 and Smile Miles 2.24.2009, a funky little monkey!
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#13 of 71 Old 07-27-2007, 08:04 PM - Thread Starter
 
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This has been invaluable information. Thank you all so very much. I am sharing the info with DH and my parents, since they will be there too.

Okay, so now my new 'challenge' is that our 3YO DD seems to be coming down with a cold! I can't believe it! WHAT IF FINN GETS IT?! Can you have brain surgery if you have a mild cold? He hasn't had a 'bad' cold since winter. What should I do? I'm trying not to panic. Things are tough enough as it is. For the last couple of hours DD has had a consistent runny nose, sneezing, coughing, etc. Yikes! I am trying desperately to keep them apart. Finn is currently asleep, and he's been a bit on the fussy side too but I think that has to do with teething. I've got two hours until DH comes home and then he can help some. The surgery is on Wednesday. How can I keep him from getting it or he may have already been exposed, this is more likely really. If he is sick do we have to cancel the surgery?! Obviously I don't want to put him at more risk then necessary, but . . . this is such a complicated plan with flying to another state, other people being involved, expenses, people praying all over the world for him during this time, etc. And I happen to know that the doctor will be out of town for two weeks right after the first of August and he is hard to get in with to begin with, so I just don't know what we'd do if we had to reschedule. It's not exactly now or never, but NOW would be good. Somebody tell me this is going to be okay . . . I was already trying NOT to freak out.

Can babies still have surgery if they have minor colds?!!

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#14 of 71 Old 07-27-2007, 09:10 PM
 
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The anesthesiologist will be the one to make the final decision about whether or not a sick kiddo can go into surgery. It really depends on the kind of surgery and what kind of illness. A respiratory virus can be a big problem for kids post-op because after having been intubated for a length of time (during the surgery itself and for some, in the ICU recovery period), the lungs are not expanding as well and fluid can settle causing pneumonia. Definitely tell the surgeon and anesthesiologist about the fact that your ds may have been exposed to a cold, and be sure to be honest about any symptoms he may be having (which, of course, will hopefully be NONE!).

Dd has had several surgeries postponed due to respiratory issues, but she has additional concerns that make the docs more likely to err on the side of caution. The rule at our Children's Hospital is no surgery if the child has had pneumonia or other respiratory infection (bronchitis, etc.) that required treatment within the last six weeks. She has had a couple of minor surgeries despite some cold symptoms (runny nose, sneezing, no fever or wet cough).

Sending healthy vibes your way!!
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#15 of 71 Old 07-27-2007, 09:32 PM
 
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Wow, what great advice. We will be holding your beautiful boy lovingly in our prayers and close to our hearts. What a strong mama you are. We will all be thinking of you and your family.
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#16 of 71 Old 07-27-2007, 10:41 PM
 
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One good thing about brain surgery (in our experience) is that you don't stay intibated (sp?) for long....our son, in all four operations, was always breathing on his own by the time they wheeled him out of surgery. Even as a baby.

You're still breastfeeding, right? That should help keep his cold less severe. In the meantime, I'd see what happens this weekend, and if he develops a cold give your dr. a heads-up. Don't play up his symptoms in any way to the dr. though...(not that you would, but he'll hear if your worried and possibly think it's worse than you're saying) definitely keep yourself as "cool" as possible.

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#17 of 71 Old 07-28-2007, 12:26 AM
 
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All I can offer is and prayers. The others have given great advice.

As for the cold - wash hands, wash hands, wash hands. Your hands, dd's hands, Finn's hands.

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#18 of 71 Old 07-28-2007, 12:32 AM
 
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oh yeh, Red Oak made me remember a few other things I did....
If I was leaving my son (like for the actual surgery or test or proceedure) I always wrote on his diaper "DO NOT RETRACT FORESKIN" or on a piece of tape and stuck it to the diaper. That was a lot easier than trusting myself to remember to tell everyone that when I had a bazillion questions before he was wheeled out. So it's one less thing to worry about.

And do ask right off the bat if the hospital offers breast feeding mom's trays. At our hospital, since I was "breastfeeding" (pumping exclusively), that was covered under Linden's insurance. So ask about that, it might be gross food, but sometimes it tastes wonderful if you can't get away to grab a bite.

Your hospital should have a pumping room or have a pump they can bring to your room. Ask for that right when you get there (they should be able to provide one for during the surgery too) and a pump kit. This should also be under your son's insurance.

Let's also talk about puls ox's. I know this is under the "monitor" section, but I think it deserves a mention of it's own. If you are concerned about his sats dropping or the pulse ox alarming, the first thing you look at is your kid. If he looks good, then look at the monitor. The part on the monitor that shows the oxygen sats will also show a wave form in addition to a number. So if his sats are at 86 but the wave isn't even then it's not a true reading, he's probably moving around or his foot is cold. You look for a uniform wave. If the wave is uniform and he looks good (not blue or anything) but his sats read in the 80's (they usually alarm around 92 unless in high altitudes) that is still a true alarm. Linden would drop to the 60's and pass out and never turn blue, so not all kids will turn colors. The key to that reading though is the wave form. Monitors are freaky at first, now I could sleep through all of them until they hit that dire alert that has everyone running. Really, my son's still on a few monitors at night and they could wake people in the next state, but I never even hear them if I'm asleep.

And remember not to totally freak out... Linden was very critical one night and was in respiratory distress (he had airway reconstruction, so don't expect this, it's a totally different scenario). At one point it got bad enough that the nurses made me leave for ten minutes so they could work and get everyone they needed in there. I was kinda freaking out and hovering and asking too many questions and it was interfering, and their priority at that point was stablizing Linden. they didn't have time to calm me down, so I got booted. Since then I have learned that you get to stay right there if you just step back a bit and let them do their job. Then when things settle, ask away and freak out.

I'll post again if I think of anything else. I wish you a super boring hospital stay.

Oh and I don't think they'll operate if he has a cold depending on where they have to go in. Since there is a risk of infection to the brain if the surgery is an open proceedure, they will not operate if there is a sinus infection or anything like that cause it is in too close proximity. But I think really, the call is up to the anesthesiologist. We've had two proceedures during two seperate bouts of bronchitis, so sometimes they go ahead. We had one canceled due to a high fever two days before of viral origin.
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#19 of 71 Old 07-28-2007, 12:43 AM - Thread Starter
 
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Thanks again to you all!

I did a little research on surgery and colds, especially for children. In case anyone is ever interested, here are two links I found:

http://www.pedsanesthesia.org/patiented/uri.iphtml

http://cold.emedtv.com/anesthesia/co...nesthesia.html

Basically, it seems like it really depends on the type of surgery, the degree of the cold, if there are other health issues, and so on. I'm taking that all as good news. And it makes sense that the anesthesiologist would make the decision as well. Indeed, it may have to be canceled if Finn does get sick, but not necessarily. I am still doing everything in my power to make sure he doesn't get what his big sister has. And yes, he is still VERY breastfed. And we are washing hands RELIGIOUSLY. I'm wiping down door handles, light switches, changing clothes and hand towels frequently, etc. Poor DD -- she doesn't feel good but DH and I are snapping at her if she goes near her brother. Tomorrow we have plan to not allow them in the same room together unless we are wearing him. It seems extreme, but these are extreme times.

I have rallied again and am really trying to stay positive. I have to trust that whatever is meant to be will be. If Finn is healthy and cold-free, he'll have the surgery, and if not, he won't. There must be some larger plan here. I just have to have faith that DH and I (and the doctors) will make the 'right' decisions. Who knows, maybe Finn will get a little bit of a cold now, but he'll be fine for the surgery, and on the plane ride down or in the hospital he'll be able to resist this exact bug because he is already immune to it! You never know why things happen the way they do! All the pieces will come together. I have to believe this.

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#20 of 71 Old 07-28-2007, 12:48 AM
 
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BIG and many prayers to you and Finn and the rest of the family. Please keep us posted, Mama.
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#21 of 71 Old 07-28-2007, 12:49 AM
 
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: I will hold your babe, and your family in my prayers.
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#22 of 71 Old 07-28-2007, 12:52 AM - Thread Starter
 
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Thanks MotherWhimsey. I was thinking about this foreskin thing even before RedOakMomma mentioned it in her earlier post. I just wasn't sure how to handle it. I don't want to do anything to alienate the nurses or question their competence, but I certainly don't want my son's foreskin retracted either! It's hard too because we've never even been to this hospital and it's not a pediatric hospital. Although we've been told repeatedly that the PICU is really great. I did speak to a head nurse on the phone there one day and she was so wonderful. VERY encouraging on the breastfeeding/pumping thing and told me how they have pumps, fridges for milk, etc. and how they'll want to get my son into my arms as soon as possible because that is stronger than any other medicine and so on. I hope it really is as great as she made it out to be! Thanks for all the info on the oxygen sensors. Oh, I have a lot to learn don't I!? I, too, am hoping for a very brief and 'boring' stay.

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#23 of 71 Old 07-28-2007, 02:40 AM
 
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Omama, everyone has given you great advice. I offer prayers and hugs that everything will work out for the best with the cold situation for your son and daughter, and that his surgery will be successful. I know how freaked out I would be if one of my kids got a cold/sick right before surgery. Can you give your kids probiotics and immune boosting vitamins/herbs, like Airborne?
My son has stayed at St. Joe's PICU in Phx twice for heart surgery. It's been over 2 years since his last surgery so things may have changed, but I'll share my experience: They provided me a hospital grade pump on wheels in his room and a pumping kit, as well as bottles, caps, etc. I was able to sleep in his room every night on the padded bench, which is better than some hospitals, but still not very comfortable. They provided sheets/pillows/blankets, but I also brought my own pillow/blanket from home. I got 3 meals/day as a nursing mama, which I totally appreciated because I never wanted to leave the room. The really nice thing about the PICU rooms is that they each have a private bathroom with a shower...this is a total luxury! Will your ds get discharged straight out of the PICU or will he be transferred to the general peds floor? The general peds floor is totally different than the PICU, so be prepared. Not as nice, and nurses are not able to be as attentive because they have so many patients. They do have a pumping room though, and a room with computers for internet access on the general peds floor. Like I said, this may have all changed because it's been awhile, but hopefully this info will help you.
Good luck! Hugs!
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#24 of 71 Old 07-29-2007, 01:30 AM
 
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I have been thinking about you as the date is getting close. Prayers for baby and family. Wisdom for doctors. Strength for you.
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#25 of 71 Old 07-29-2007, 04:04 AM
 
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My heart goes out to you Mama. I will be thinking and praying for you and your family throughout this week.

Something I had a difficult time with when dd had her shunt and back surgery was that the surgeon gave us a time frame that she would be working within. The surgery went long and I began to panic. Expect that it might take longer than they state initially. When the surgeon came in to give us a report she saw how nervous I was and apologized over and over again. I had gotten hung up on when the surgery "should" have been over and it made it all the more difficult to endure. Try not to repeat my worry if the surgery goes a bit longer than originally planned.
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#26 of 71 Old 07-29-2007, 04:47 PM
 
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You have gotten some really great advice.
I don't have much to offer that hasn't been said already...but when Anna Sophia had surgery in May she had a mild cold (cough, runny rose). Obviously her surgery was different from Finn's...so it probably does depend...
You could give him echinacea drops to boost his immunity.

I would bring a book (something light, but engaging) & a magazine. I was able to read a bit of a (fuuny) book that I brought...but I had to keep re-reading parts because of the stress...a magazine that I could mindlessly flip thru may have been a better choice. And definately some cold coffe beverages...I took a few Starbucks ones...that was awesome...I couldn't have left the waiting room...I was there alone...it may be easier if there is someone else in the waiting room with you...but I couldn't have left.

We also brought a comfy sling...I don't know how long you will be there before surgery (we were there for several hours on complete fasting before surgery) or when Finn will be able to be held after...but a sling was SO helpful for us.

I will be praying for your sweet Finn & believing for a quick recovery.

Mama of 2 boys, 5 girls.grouphug.gif

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#27 of 71 Old 07-29-2007, 11:26 PM
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Praying you get your wish for a "very brief and 'boring' stay".
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#28 of 71 Old 07-31-2007, 11:00 AM
 
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Thinking of you! Hope all goes well tomorrow!!

RedOak ~ Momma to DS (8) , DS (4) , DD (3) , & DD 9/10 ~
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#29 of 71 Old 07-31-2007, 02:13 PM - Thread Starter
 
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We all made it safe and sound to Arizona on Sunday and had a good meeting with the neurosurgeons yesterday afternoon. Finn’s surgery has been scheduled for 8:30AM on Wednesday morning. First, he will be put under general anesthesia with a small IV in his arm. DH and I plan to smile a lot and sing his favorite songs to him as he nods off to dreamland. Then they will insert a larger IV near his neck once he is asleep. Next, they will do another MRI and run some other tests. The surgery will immediately follow. It will take a minimum of 4 to 6 hours, and can run as long as 10 hours. He will most likely still be intubated (meaning he’ll have a breathing tube in this mouth) after the surgery and for at least the next 24 hours. He will then have a second MRI done on Thursday to be certain the entire cavernous malformation has been removed. Finn will remain sedated during the duration of this time, so we won’t be able to hold or nurse him. This will be a challenging time to be sure, but we know this surgery is a necessary step in helping Finn to live a long and healthy life. Overall, we remain very excited and optimistic! Finn is in great spirits and so are we. We are looking forward to an incredibly successful surgery and the healing that will follow. Your prayers and positive energy remain an important part of this journey. Please keep them coming!

Oh, and DD's cold seems to have gone away! And so far so good with Finn. No cold signs. We did mention it to the docs yesterday that he has been exposed to a cold recently. They said we'd keep an eye on that. The anesthesiologist and other docs will fully check him out tomorrow before he goes under of course. While the neurosurgeon isn't a pediatric specialist, all the other docs involved are. So that is good. We can't wait to get this thing over with!

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#30 of 71 Old 07-31-2007, 02:30 PM
 
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You sound like you are optimistic and in good spirits. That's great. Please know we are all thinking of you and praying for a healthy and easy outcome for Finn.
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