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need tips for dealing w surgery

post #1 of 15
Thread Starter 
My dd2 is 7 wks old and facing surgery to remove a branchial cleft cyst. I'm not sure how soon the surgery will be (we see the surgeon tomorrow) but as fast as its growing I think it will be sooner rather than later. I've never had a child have surgery before and I'm petrified!!

I need advice/tips on everything that comes with this... How to handle nursing before/after, how to negotiate hospital policies, etc. I don't want to feel helpless in this, I want to know my rights and also not have any false hopes of how it will all play out.

Any responses would be so appreciated!!
post #2 of 15
My son had eye surgery at 15 months and it was by far harder on DH and I than on him. They hospital was great. We had to have no nursing for 5 hours before surgery. I stayed with him while he was sedated and then had to leave, and as soon as he woke up I was right back there. The thing that was the worst was the wait. I had a movie loaded onto my phone ad watched it in the waiting room, and it saved me. DH just paced and he was a mess! Good luck, I hope you all get through it gracefully and quickly.
post #3 of 15
Thread Starter 
My daughter is still nursing every 2ish hours... how do we handle not eating beforehand? Do they give her an iv right away that helps alleviate the hunger feeling or what do I do so that we aren't both going crazy? She won't take a pacifier not that I've spent a lot of time trying.

Do they wake up in a recovery room or with you? I guess maybe that varies by hospital...? Will they let me nurse her right away again most likely?

The movie sounds like a great idea!
post #4 of 15
my daughter had heart surgery at 6 days old and 5 months old. As far as fasting goes, she was the first patient the mornign of her second surgery, so while she had to fast for acouple of hours, it wasn't as bad as a I thought it would be - she only needed tofast for 3 hours though, since she was completely breastfed. Be sure to check with the anesthesiologist. The studies show that brastmilk is out in three hours. The 5 horus is recopmmended for babies on formula. As far as nursing afterward - if they suggest the baby can take a bottle, then she can take the breast. Be sure to pump if you are gong to not be able to nurse her for longer than a couple of hours. Good luck!


nak
post #5 of 15
Make sure they know to come and get you as soon as the baby starts waking up in PACU. Kids do better to sleep off the anesthesia and surgery, so when you go in, don't do a lot of fussing over her, but hold her and let her slowly come around. I always crawled right into bed with my dd, but she had a bed, not a crib, even as a toddler. They tend to cry, then drop back into sleep a few times, at least that's how it's gone every time for my dd. Be prepared to sit a long time, bring a book.

One of the surgery's my dd had was on her mouth. I asked if she could nurse as soon as she woke in PACU and she tried, but her mouth was too tender and she stopped. She fell asleep next to the the nipple and that was the comfort she needed. No one looked twice at my boob hanging out, it seemed like nothing new or unusual.

As far as knowing your rights, the biggest battle we always fought was for pain medication. Even with everything we currenlty know about kids and pain, they are still under medicated.
post #6 of 15
Jserene - I had the opposite experiene with regards to pain management. The nurses were constantly asking me how I thought her pain level was and were very aggressive about keeping her comfortable. Moreso than any time I've needed pain management for myself.
post #7 of 15
I'm glad you posted over here!

Most Childrens Hospitals are very good about comforting kids...and their parents! My son has had surgeries at two different hospitals and we've had good experiences.

Some items to note and ask about:

Breastmilk is a clear fluid, so she should be able to nurse 3 hours before the surgery. If they try to tell you any differently, you can either try to argue it (speak to the head of anesthesiology) or just nurse her and don't tell them (I did that once, I lied about how long it had been, but only because I was very confident that the time guidelines I was given were wrong).

Policies vary, but many hospitals will let you carry her back to the anesthesia room and hold her while they put her under. And some hospitals let parents back to the Post Anesthesia Care Unit (PACU). I was adamant that I wanted to be the first person my son saw when he woke up, and they were able to arrange it.

Because of her age, she will most likely be staying overnight to be monitored while she comes out of anesthesia (at our hospital, they keep anybody under 56 weeks, including gestation, so if she was born at 40 weeks and is 7 weeks old, then she's 56 weeks by their calculation, and would have to stay overnight). If you cosleep, ask for an adult bed in your room vs a crib. They might try to tell you it's against their policies, but you can ask to see the head nurse or the attending physician and tell them you want it anyway. I usually just go with the crib so I have a place to put my son when I'm not laying with him, then I just hold him in the pull-out bed when he's awake.

You should be able to breastfeed as soon as she is coming out of the anesthesia. At one of the hospitals we go to, their "policy" is the baby should take some sugar water before they allow anything else. I said no, that I did not consent to anything other than breastmilk, and that I wanted his first feeding to be at the breast. They allowed this after just a little bit of discussion. Even after my son had a lip repair surgery, he breastfed immediately afterwards. Your daughter will have a bandage on her neck, so you'll have to be careful about positioning. You can ask that a lactation consultant be there with you for the first feeding to help you position her. Football hold might be best for you initially.

Bring a pump, or ask for one to be available to you, just in case!

One of the hospitals we go to provides free meals to breastfeeding moms, so ask about that. If not, ask how meals for parents work, some give coupons for reduced price meals, some deliver to your room, etc. Pack some snacks just in case! There will probably be a kitchen on the floor that you can utilize.

If I think of anything else, I'll tell you! GOod luck! Update us!!!
post #8 of 15
Thread Starter 

a new twist...

I wish I had seen these replies sooner! Thanks so much, there's a lot of great info.

She went in for an MRI yesterday morning. They said no food after 330 and our check in was @ 6 so it wasn't terrible. She took her pacifier which helped a lot. I tried waking her up about 245 to eat but she's a heavy sleeper and wanted none of it!

I was petrified of anesthesia but I didn't even think about a breathing tube. yuck! I was glad they did her IV after anesthesia though, that concerned me. She only ate for about 5 minutes when she got back before she fell asleep but she did eat about an hour later so I was relieved. She bounced back great.

We went back to the ENT surgeon today to get results. It never even crossed my mind that it was something other than the branchial cleft cyst or the lymph node thing they had been talking about. She said it's a tumor. I got to look at all the pictures and it goes in as far as it sticks out. It's beginning to press on her airway but it's not causing problems yet.

She said I could have her admitted since its the weekend and the oncologist I'm being referred to is out of town... just to watch her. I'm supposed to take her straight to the ER if I notice any changes, growth or breathing/swallowing troubles. So, next week we meet the oncologist and she'll go back under general anesthesia for a biopsy and then we'll know from there.

My mom happens to know one of the anesthesiologists there and she came and checked on us a couple times yesterday. I guess she's trying to see if she can get my daughter when we go in for the biopsy.

This just took such a different turn than I expected. The ENT said she didn't want to speak too soon but that the tumor has "worrisome" characteristics.

I'm not sure how the biopsy will work, if it will be a needle extraction or if they will actually make an incision.

I'm really grateful to find out about the 3 hour breastmilk time line and also that I can request to be in the PACU. That part was hard - knowing she was awake but not being able to see her for 30 minutes.

She turns 8 weeks old tomorrow.
post #9 of 15
I'm sorry to hear that you got such worrisome news. I truly hope that your sweet baby is okay.
post #10 of 15
Oh no, s mama!!!

I'm so sorry you have more to worry about now It sounds like you're in really good hands though, let's hope the biopsy goes really smoothly and is benign!!!!!

Remember that the 3 hour rule is 3 hours before anesthesia, not 3 hours before your arrival time. So if her surgery is scheduled for 8am, she can eat at 5am. Your arrival time might be much sooner (6am, 6:30am) but her last feeding can be at 5, regardless of arrival time. Some schedulers might get confused about that and tell you it's 3 hours from your arrival time.

My son's lymph node that I was telling you about in your other thread was also pushing on his airway, when you looked inside his mouth you could see it displacing his tongue. And he has a congenital birth defect of his airway, so it was really concerning to us. So unfortunately I completely understand the worry you feel right now!! Gosh I wish I could be near you just to hold her so you can sleep peacefully knowing that someone is watching her!

I hope the weekend goes quickly and uneventfully and your meeting with the oncologist goes well. Keep us updated!!
post #11 of 15
OP- Hang in there! What a scary time for you - sending good thoughts to you and your baby.
post #12 of 15
Thread Starter 
Do you know where I can find the study or research on 3 hours? I asked about it and they are still saying 4 hours. I'll just feed her and not tell them but I want to be able to show my husband I know what I'm talking about. She is even more attached to the breast because she doesn't feel good.

I borrowed a breast pump from a friend and I've got to figure out how to start using it. I'm really concerned that when they remove the tumor, regardless of what type it is, she won't be able to eat. No one's ever said that but it's pretty big on her neck and goes quite a ways in... I'm just scared she'll end up on a feeding tube. If this happens is there any reason I can't still put her to the breast for any comfort sucking she might do even if its not much? Typing that seems silly bc that seems obvious to me but I want to think of as much as I can ahead of time.

As far as beds go I'm still trying to figure out what I want to do. 2boyzmama - did they say anything to you when you laid with your baby in the pull out bed? My daughter will NOT sleep by herself, granted she'll be still feeling effects of anesthesia and she'll be on pain medication but normally she will not sleep for more than an hour on her own. She wakes up and looks for me and usually won't back to sleep unless she has her "pillows" lol. So she's probably going to end up the pullout bed with me most of the night unless I ask for a bed. Did all the cords/tubes etc reach with no problem?

Pain management was also brought up and I have seen some studies recently saying infant pain is undermanaged for the most part (they seem to have all been done in the nicu measuring daily testing) and it's negative effects in later life. How can I make sure she's getting as much as she needs?? They should give her her first dose before she wakes up correct? The studies showed that even though the brain registered pain the babies faces didn't change. How am I going to be able to tell if she's not getting enough? Other than one specific pain cry she has that I've heard before I don't really know what to look for.

Thanks for the support ladies!
post #13 of 15
I found the study on the American Academy of Anesthesiologists...I'll see if I can find it for you.

Ask to talk to a Lactation Consultant at the hospital, she can help you with pumping. You can also call your local LLL for help with pumping.

I have been "talked to" for having Connor on the pull out bed with me, but I just say "oh, we aren't sleeping, we're just feeding" or "I'm just trying to calm him down before I put him in the crib." Depends on if you want to create an issue or not, you know? So I just make it seem like I'm planning on putting him in the crib as soon as he's asleep.

The truth is, you don't sleep much in the hospital anyway. Between the constant stream of nurses, the lights/movement in the hallway, the monitors beeping, and of course your little one not feeling well...it will be easy to make it seem that she is only in the bed with you for a few minutes.

The tubes/wires/leads can usually reach several feet. Be sure to ask for help, ask the nurses to show you how everything works, which leads can be removed to move her (you can unhook the pulse ox, move her, then hook it back up once she's settled; same thing with the heart rate monitor, blood pressure cuff, etc) If it doesn't reach the bed well, move the bed! If you can't move the bed, ask them to provide you with a rocking chair at least so you can sit semi-comfortably.

As for pain...there will be physical signs that you and the nurses can look for, increased resp rate, increased heart rate, temperature variances, etc. You as her mama will be really helpful in this, don't be afraid to buzz the nurses right away if you suspect she's in pain.
post #14 of 15
Quote:
Originally Posted by lilmamabrown View Post
Do you know where I can find the study or research on 3 hours? I asked about it and they are still saying 4 hours. I'll just feed her and not tell them but I want to be able to show my husband I know what I'm talking about. She is even more attached to the breast because she doesn't feel good.

I borrowed a breast pump from a friend and I've got to figure out how to start using it. I'm really concerned that when they remove the tumor, regardless of what type it is, she won't be able to eat. No one's ever said that but it's pretty big on her neck and goes quite a ways in... I'm just scared she'll end up on a feeding tube. If this happens is there any reason I can't still put her to the breast for any comfort sucking she might do even if its not much? Typing that seems silly bc that seems obvious to me but I want to think of as much as I can ahead of time.

As far as beds go I'm still trying to figure out what I want to do. 2boyzmama - did they say anything to you when you laid with your baby in the pull out bed? My daughter will NOT sleep by herself, granted she'll be still feeling effects of anesthesia and she'll be on pain medication but normally she will not sleep for more than an hour on her own. She wakes up and looks for me and usually won't back to sleep unless she has her "pillows" lol. So she's probably going to end up the pullout bed with me most of the night unless I ask for a bed. Did all the cords/tubes etc reach with no problem?

Pain management was also brought up and I have seen some studies recently saying infant pain is undermanaged for the most part (they seem to have all been done in the nicu measuring daily testing) and it's negative effects in later life. How can I make sure she's getting as much as she needs?? They should give her her first dose before she wakes up correct? The studies showed that even though the brain registered pain the babies faces didn't change. How am I going to be able to tell if she's not getting enough? Other than one specific pain cry she has that I've heard before I don't really know what to look for.

Thanks for the support ladies!
they should be giving pain medication in the iv before she wakes up. You can adovacte for more meds, but really - they were super aggressive about it at the hopstial we were at. sleeping - we had a crib, but she slept in my bed soemtimes (she was on teh monitors, the nurse said it was no problem, because the monitor would pick up any problem - she even had a big piillow in her crib from our bed at home - we never used a crib at home.
post #15 of 15
Thread Starter 
Sorry I haven't gotten back to update before now! Thank you so much for all the support.

She had her incisional biopsy about a month ago. Some of the inflammation surrounding the tumor began to subside about 2 days prior. A minor bump in the road - we went in for the surgery one day and the surgeon got so far behind schedule we left after waiting a long, long time. Amazingly she slept the whole time and didn't scream... she went 7 hours without eating and has yet to go that long since!

We went back the next day and everything went well. I was disappointed when the surgeon decided not to give her tylenol with codeine as promised but just suggested she stay on regular tylenol. I'd already been giving her that every 4 hours for several weeks straight so it didn't do much. She screamed for 7 hours pretty much straight the next day and even though I called his office 3 times he still would not give her anything more than tylenol though he did tell me to give her a higher dose. That was awful. If I would have known that I would have told him he couldn't do the surgery unless he gave her something stronger. Oh I was so mad. The following day was better though and she went up from there.

The hospital's pathology lab couldn't identify it so they sent it to Vanderbilt. They didn't know what it was either... just that it was not cancerous. It took 8 days to hear back... what a relief to finally get positive results.

Since then it has continued to shrink. The surgeon thinks it is a lymphangioma. In other countries I guess it is common to inject them with a virus such as strep bc the infection and inflammation causes the tumor to break down. She got an infection on her own and the body was healing itself and we didn't even have a clue.

It's almost entirely gone now. She ended up being allergic to her dissolvable stitches and has some granulation tissue. We're going to give it one more month and if it doesn't improve then put her under anesthesia again (sigh) to remove them. I guess my husband is allergic to them to and his body can't dissolve them.

Its so nice finally having my happy girl back. Thankful it was nothing more serious.
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