Medical Costs - Dr. Boachie

[flowerpower]

I think I remember my dr. quoting a cost of around $90,000. Will find out for sure soon.

Renee

[jc3]

carolnj
i wouldn't worry too much about getting him in his own bed. He will when it is comfortable for him. My nicole must have been the longest, it took her about four months or five months until she would sleep in her own bed. I was so worried that it wasn't good for her, but she was most comfortable on the couch. I did end up getting one of the memory foam mattress toppers and that i think really helped get her in her bed. I wish i would have done it sooner.
Jennifer

[susannajon]

Lori,

Probably too late for this post, but just in case you're up:

HSS let me go back to the operating room with my daughter. I was able to hold her hand, give her a last kiss, and hold the mask while they put her to sleep. To be honest, they gave her some valium before we went back to the operating room, and she was pretty much asleep before she even got the mask on her face. Please tell your daughter not to worry. She probably won't remember much of anything and you will be with her until she falls asleep.

HSS has some of the very finest anesthesiologists, and Dr. Boachie uses the Director of Pediatric Anesthesiology, who is excellent, for most of his spinal procedures. Dr. Zayas is both an anesthesiologist and a pediatrician. Here's a link to his Bio:

http://www.hss.edu/Physicians/Profiles/Zayas-Victor

All fingers are crossed and prayers going your way for a perfect outcome and minimal pain. Please hug your baby for me, and let me know if she has any interest in chatting with another teen who's been through it. My daughter would be glad to IM or e-mail after it's all over.

[susannajon]

Sleeping in Own Bed

carolnj,

I agree with Jennifer, I wouldn't worry too much about the "own bed" thing. Let him sleep where he's comfortable. It might hurt to lay flat in the beginning. My daughter slept in her own bed from the first night, but we did get up every three hours and gave her pain meds. This lasted several weeks. Also, as Jen mentioned, memory foam is wonderful. Get one that's as thick as you can afford, and shop online for the best value, overstocks.com has some pretty good deals. Let the thing breath a day or so, because they smell in the beginning.

Susanna

[susannajon]

Hi megster85,

All the pre-op testing, the MRI's, the second opinions, the x-rays, and the hospital bills totalled about $125,000 US. Most was covered by insurance. Our out of pocket has been about $5,000 US.

[jc3]

susanna
you were the one that had me not worrying about where she wanted to sleep. I remember i was concerned about it and you told me to let her sleep where ever she was comfortable and i felt so much better after you told me that. And i can thank you for telling me about the memory foam mattress. That is what got her back in her bed.
Hey we didn't have that anesthesiologist. We had someone else who obviously did a great job too. My husband went in with nicole and the anesthesiologist right before putting nicole out asked her if she could go anywhere in the world where would it be and she said "Tahiti" (sp?) and he said close your eyes your going there right now and he put her to sleep.
How is your daughter doing, feeling?? Any pains?
jennifer

[susannajon]

HI Jennifer,

Yeah, I remember that. It was BEFORE my daughter's surgery when your daughter was just out of surgery, and you were helping me prepare.

I had major surgery in 2003, and I think I told you it hurt to lay on the flat hard bed, so I slept on the sofa. That's what's so great about this site. We all help each other, with minimal attitude, and maximum support for one another. In any case, I'm glad again that I gave you some peace. and let's all hope Lori and her daughter are doing great!

Susanna

[jc3]

hi susanna
Your advice and help during our recovery was awesome! I know i have been thinking about lori and wondering how they are doing and a girl who goes to school with my daughter was also having surgery with boachie the same day.
Jennifer

[Gigi]

post surgery

Griff is 14. He used the body pillow at home and went into his own bed right away. That was where he wanted to be. Lots of pillows helped. We had a little shower chair for the shower, until he was up to standing ok on his own.

He is a month out, now, and doing very well. He has days that are not as good as others, but he is walking a lot and happy to be a bit taller!

Gigi

[nikyergen]

Gigi,
Glad Griff is doing so well. I am glad he is enjoying the additional height. How much height did he gain? So glad the body pillow has been so user friendly for him. You will see nothing but great improvements from here on out.

Nikki

[Lori]

Ten days post-op

Hi all.
Many many thanks to all of you who shared your surgery experiences with me and offered suggestions on how to prepare. I followed most of your suggestions and probably should have followed them all! My daughter had the surgery on Wednesday 7/20 and we came home on Thursday 7/28. The actual surgery went well but my daughter did not cope well with the pain , even on maximum pain meds. The first two days were probably the most difficult two days of my life (and hers). I may have mentioned that I am divorced. While my daughter's father did visit, I was there around the clock. My mom came up from Florida and spent those first two days with me and thank God she was there. No one should attempt to do this alone.
We have now been home for three days and each day gets a little easier. My daughter is still taking a lot of pain meds. Initially she would start to complain of severe pain about one hour before she was due for the next dose but today I've noticed an improvement. She has also finally started eating again. She lost 13 lbs in one week. Her dad is fearful she will become addicted to the meds and is trying to convince me to force her to prematurely reduce. I'm going to reduce it as I see her pain level come down. I'd appreciate hearing from those of you who have been through this...
Well, just wanted to check in. I'm still exhaused so I'm going to try and get some sleep while I can. Thanks again for all the support. Lori

[susannajon]

Hi Lori,

I can totally relate. We went through the exact same thing with my daughter, and my advice is not to worry about addiction at this point. Her comfort is more important right now. My daughter did become physically dependant on the meds the first few weeks. If she accidently overslept, or went too long between doses, she would get very nauseated and shaky, so we learned to just keep a constant level. We had her on the maximum dose for about a month, and we just decreased it very slowly after that. As her pain levels came down, we very gradually reduced the amount, and we would stretch the time between doses from three hours, to four hours then five hours over several days, and then reduce the dose by a 1/2 a pill and go back to every three hours. Then the same drill... every four hours, then every five, then cut out a half a pill, and repeat the whole cycle. Once you get her down to one pain pill every 4 or 5 hours, you can introduce one regular Tylenol plus the one prescription pain pill every other dose. Keep very close tabs on the total amount of Tylenol you're giving her. Tylenol can destroy your liver if she gets too much.

Eventually, she was able to sleep through the night, and go 8 hours or so between doses. We transitioned to Extra Strength Tylenol alone. Don't forget to keep a journal, and write down everything she takes, and I know this sounds gross, but also keep track of what she eats and drinks and when she has a BM. Don't let her get constipated because it can be very painful. If she goes more than 24 hours without a BM, get the glycerine suppositories. They work like a charm. Make sure she's getting plenty of fluids and fiber.

Under no circumstances should you try to force her off the pain meds prematurely, nor should she try to go cold turkey. Pain slows the healing process. The meds will help her get better quicker, and they will help her (and YOU) sleep. She might develop a physical dependence, but that's not the end of the world as long as you have a plan to slowly wean her off of them.

We are now almost 5 months post-op. She never needs anything but the occasional Tylenol, and she now has a healthy respect for narcotics, and she knows she never wants to take them again unless she absolutely needs them.

My thoughts and prayers are with you. Please reach out to your friends and family, and get them to give you occasional respite, so you can lie down, or take a walk, and get out of the house occasionally.

[nicoles mom]

Lori
Glad To Hear Your Home Things Will Get Better. I Know How You Feel I Was With Nicole 24 7 And I Was Wiped Out. Some Days I Just Don't Know How I Was Able To Stand My Knees Were Starting To Give In. My Husband Was There But She Wanted Me Only And When I Did Leave One Day To Go Sleep At The Hotel She Had A Panic Attack And Just Screamed For Me Till I Got Back. My Husband Came To Get Me He Was A Mess I Slept For One Hour But It Felt Good.

My Nicole Still Takes A Pain Pill Once In A While And Took Them A Lot Longer Then Some Of The Other Kids. She Also Didn't Do Well With The Pain. I Was Very Worried About Nicole Becomming Addicted To The Meds Also. I Would Read That Some Kids Were Not Taken Pains Meds After Three Weeks. My Nicole Took Then For About 6 Weeks Before I Started To Wean Her Off. I Would Cut Then In Half Did That For About Two Weeks. Then I Started Just Tylenol With Cod #2. At 9 Weeks I Would Just Give Her Tylenol. She Will Need Them To Recovery So Don't Worry. Try To Walk Everyday And Add A Few Steps Each Day This Was The Best Thing I Did With Nicole. Nicole Lost 9 Pounds She Was 79 Pounds Before Surgery. Shes 81 Pounds Now She 4 Months Post Op Today. Try To Get Her To Drink Alot Of Fluids The Pains Meds Will Make Her Constipation Nicole Had Major Problems With That. Get Some Rest Hope All Is Well.
Theresa

[Karen Ocker]

pain-I forgot to mention this

One thing which helped me IMMENSELY for many weeks were cold packs in painful areas. I was given this in spine rehab.

I used these blue things you put in the freezer. They even helped me sleep more comfortably. This is a good alternative/supplemental help. You can also use ice packs from ice cubes.

Karen

[jc3]

hi lori
so glad to hear you are home and the worst is behind you now. You will see changes week to week not day to day. I know how tough the first two weeks are, we've all been there and you will get through it. I'd say by three and a half weeks you will see a big improvement and like everyone said don't worry right now about the pain meds. She really needs them!! I can't stress that enough. Like susanna and theresa said you will see that after a while she will be able to stretch the pill out longer and longer and then i would cut them in half and then she was able to go with one before bed and one in the morning, but you have a while for that. Don't worry right now about her becoming too dependent on them, she really needs them.
I did speak to the other girl who lives in our town who had surgery the same day as your daughter. She is doing pretty good. It's a tough time for you guys right now, but it does get better.
we're all here for you if you need us
Jennifer