I'm so scared. I need support. - Page 3 - Mothering Forums
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Special Needs Parenting > I'm so scared. I need support.
watermamma's Avatar watermamma 03:55 AM 11-22-2006
Thinking of you and your sweet boy.

guestmama9972's Avatar guestmama9972 04:26 AM 11-22-2006

Praying for you tonight. I am so sorry to hear about your son. Please keep us updated as you are able.
blessed's Avatar blessed 08:54 AM 11-22-2006

rosie29's Avatar rosie29 10:39 AM 11-22-2006
Thinking of you and your family.
deleria's Avatar deleria 01:53 PM 11-22-2006
Wow... I'm sorry I didn't see this sooner. Sending positive thoughts for a successful surgery and speedy recovery for your sweet little boy, mama. Much love to you
kchoffmann's Avatar kchoffmann 02:11 PM 11-22-2006
Oh, starlein, I kept checking back here to see what came of the MRA. I'm so so sorry you're going through this. I send you much love, support, and healing for your son.
KatWrangler's Avatar KatWrangler 02:49 PM 11-22-2006
I will be thinking of you. We went through a scarey situation (we are still scared) this summer.


ombra*luna's Avatar ombra*luna 03:49 AM 11-23-2006
Oh, I can't believe it just ate my whole post! I'll keep it shorter this time so I don't get logged off and have that happen again.

I'm sorry you have gotten this scary news, you must be feeling so overwhelmed and terrified, especially with a new little one to care for. I had a craniectomy in April to remove a benign tumor, and had known about the tumor (and that some day it would have to come out) for a few years before that.

Some things I learned: get a copy of every bit of your son's medical records, from the reports of office visits to the MRI/CAT scan reports, surgical report, pathology report, anything a doctor has in a file anywhere about your child, you can ask for a copy and keep a file of your own. I learned so much from reading the doctors' notes that I'm amazed they never bothered to tell me! For example - when my surgeon opened up my skull, he realized that the tumor had invaded the bone, so he replaced the piece with a titanium plate rather than putting the bone back in. However, he never told me that - I found out only after getting the copy of the surgical report I'd requested to be mailed. It was always enlightening to read the doctors' notes after visits and compare them with my own impression of the visit. So much information was in the notes that was left out of our conversations, and it makes me wonder sometimes if we were at the same visit!

If you feel confident in your neurosurgeon(s), that's a very positive thing. That was one reason I chose mine - I just had a good feeling about him. And everything turned out to be OK, for the most part. I had an allergic reaction to medication a few weeks after surgery (it's typical to put post-surgery patients on an anticonvulsant drug, even if they weren't having seizures before surgery, to prevent seizures - not all doctors do it but some do, and pretty much all those drugs are sort of nasty), and he was less than responsive to my calls, but he's a surgeon, not a drug troubleshooter I guess - I had to figure that one out on my own. Being informed helped with that a lot. I think everything would have been much different without the internet.

Ask, ask, ask questions. If you need links to some lists of good questions to ask, I could probably help with that. However, I'd better hit the reply button now before this gets sucked into the netherworld again.

I'll be checking back for updates. Sending strong positive healing vibes to your son and your whole family. Don't forget to take care of yourself - eat well, sleep as well as you can - you'll need your strength, and your babies will need your strength too.


ombra*luna's Avatar ombra*luna 03:49 AM 11-23-2006
Oops posted twice....


DBZ's Avatar DBZ 04:00 AM 11-23-2006
How very scary. I feel for you. I'm sending lots of positive thoughts your way.
starlein26's Avatar starlein26 11:06 PM 11-23-2006
Quote:
Originally Posted by lolar2 View Post
Just wanted to let you know, a friend of mine had a brain tumor removed when he was a young child, and he has been perfectly fine ever since. Hope that helps comfort you.

It does...thanks!


Quote:
Originally Posted by Avani View Post
Hey mama ( Hi from our due date club wow what a difficult thing to be going through.My daughter is 9 and has cerebral palsy and is having surgery on Dec 4th.It is scary and overwhelming,i know.My 'special child' has taught me so much and is the most amazing gift in my life.I know you feel the same way about your child and as difficult as it is having a differently abled child can be it, is also the most amazing.I send light and love your way~

Best wishes to you and your sweet dd. I'll be thinking about you on the 4th!


Quote:
Originally Posted by bri276 View Post
do not blame yourself!! this is a one in a million thing and you did the best you could with the info you had at the time, I mean who wants to put a child under sedation for an MRI when all the doctors tell them not to bother?

my dd has been in surgery twice for something much, much more minor but I hope that what happened with me also happens with you- I get ultra stressed in the months/weeks/days leading up to the surgery and then once she is in there, it's like the weight is lifted a little and you just get recharged with energy to deal with the recovery process etc. I hope what you are feeling right now is the worst of it and that everything goes smoothly from here on in.

Thanks for your uplifting post. It helped to hear about the difficult waiting period...easier during and after. Thanks!


Quote:
Originally Posted by sunnmama View Post
I am so sorry that you are dealing with this. How terribly scary.

I can tell you that my cousin had a benign brain tumor removed as a boy, and a shunt placed. I think he was 8 or so. He did just fine after the surgery. It was very scary for the whole family.

I will keep your family in my thoughts.

That's very reassuring. Thanks for sharing that with me...


Quote:
Originally Posted by angelpie545 View Post
I'm so sorry. I hope everything turns out well for you. I am facing something similar myself, and it is very scary.




Quote:
Originally Posted by LauraLoo View Post
I can imagine the scary thoughts running through your mind right now because I've been in a similar type of a situation. Having a child undergo major surgery is one of life's toughest places to be.

DS was born with a congenital heart defect that required open heart surgery when he was just 5 months old. They wanted to wait until he was a little older and stronger, but he was failing to thrive. If he had been born 10 years earlier, they wouldn't have been able to save him. We also felt really good about the ped. caridiac surgeon -- that's a big plus to feel good about the docs. DS is fine now -- it's like it never happened -- complete clean bill of health. I hope that this is what happens with your child.

I'm so happy for you and your son!



Quote:
Originally Posted by Roar View Post
I could read this and not say something. Please do whatever you can to take it easy on yourself. You love your child and have done and will continue to do the best you can. With special needs so often we are just guessing at it. I know we've done the same thing you did and said let's stop testing for a while because we don't think they'll really find anything. And, in our case it turns out they really didn't. There is no way you could have known it would turn out differently and you made the decisions you made operating from the best of motives and what more can we really do as parents than that.

I'm sending good thoughts for you and your son.


Thanks for telling me that. I needed to hear that and it really, really helped!



Quote:
Originally Posted by Fairy4tmama View Post
I had to post when I read your post 17 years ago my parents went through almost the exat same senario! My mom knew something was wrong with my sister and the ped kept putting her off, telling her she was paranoid etc. by the time she was 9 months old though he could nolonger ignore the fact that her facial features were begining to distort and she was lagging more and more in her developmental milestones, it turned out she had two tumors, one an Aracnoid cyst and the other a beniegn tumor on her patuitaty (sp?). And you know what its been a long road and she has had 12 surgeries BUT She is a normal 17 year old she goes to school she works part time and is one of the most toughtful insightful people I know. I can only imagine how scared you are but please know that there is hope! My parents don't belong any more but there is an org. called Pilot Parents that they found very helpful. There is also a info clearing housethe emily center Phx Childrens hospital that is one of the best sources for ped illness in the contry

gotta run toddler headed for stars will post again or pm me if I can help

Thanks for sharing your sister's story with me! It gives me lots of hope. And thanks for the links!



Quote:
Originally Posted by mamaverdi View Post
First

I have so been where you are. Knowing something is wrong. Not doing something "in time" because I got either fed up with medical people or fed up with "bothering" my child over something that was a non-issue---supposedly. And then the big news hits.

It makes you human.

I want to offer you some words of advice which I hope you will take in the spirit I mean them....which is about avoiding more pain than necessary for you or your child.

If your son is still nursing...check out kellymom under nursing and hospitalization. There is a pdf file about being in the hospital. It's primarily about having a preemie-ish baby, but it will help you begin to understand the hospital.

Second, the hospital. If you aren't medically savy, start educating yourself to become so.

Third, the surgeons. Have faith in their training, but not in them per say. I'm saying, don't put them on a pedestal. They will fall fast and hard if something (G-d forbid) happens that is not to your liking. They are people. PEOPLE. They are trained to do a certain thing. Not everything they think will agree with you or help you. Not everything will disagree or hurt you.

Best advice ever was given to me by a surgeon. I was complaining about something that had "happened" to my son. He said, "You (the mom, mamaverdi) don't have to convince anyone of anything. You just tell them what they CAN and CANNOT do."

This advice has helped me and my sons so much in the hospital. When I have forgotten it, I have stumbled. When I treat my surgeons and doctors as people, even peers, colleagues, ones who have a focus in something I don't, then we sail, bumb, through my less scathed than usual.

Another thing, do you know if he will be able to eat afterwards? Is this impairing his motor skills...oral motor skills? If he will have an NG tube, I suggest starting to pump for him. (I see you have a new baby.) You can also get donor milk. I'm not sure where you are located, but the donor milk bank in Denver is 303-869-1888. I would prepare for him not being able to eat.

Also, downtime in the hospital....bring things for him and for you. I find brainless stuff is usually best. Start collecting books and knitting, whatnot. Phone cards, etc. Will you be in a children's hospital?

I wish you G-d speed and a complete and speedy recovery for your son.

It sounds like they are confident that it is removable and that a recovery can be made. Keep focusing on ways you can help him heal and get through.

Please PM me if there is any advice, help, etc that you need. I certainly don't know everything, but I am happy to offer help with whatever I know, and research what I don't.

Thanks for your thoughtful and helpful post! I feel better prepared now. P


Quote:
Originally Posted by usolyfan View Post
I am so sorry you are dealing with this. I know what it is like to receive a diagnosis like that. DD had surgery on her bak and a shunt placed when she was 26 hours old. She is 10 months old and doing well. Please feel free to pm me if you want to. Praying for strength for you and excellent doctors for your dc.

I'm so happy your sweetie is doing fine today!


Quote:
Originally Posted by ombra*luna View Post
Oh, I can't believe it just ate my whole post! I'll keep it shorter this time so I don't get logged off and have that happen again.

I'm sorry you have gotten this scary news, you must be feeling so overwhelmed and terrified, especially with a new little one to care for. I had a craniectomy in April to remove a benign tumor, and had known about the tumor (and that some day it would have to come out) for a few years before that.

Some things I learned: get a copy of every bit of your son's medical records, from the reports of office visits to the MRI/CAT scan reports, surgical report, pathology report, anything a doctor has in a file anywhere about your child, you can ask for a copy and keep a file of your own. I learned so much from reading the doctors' notes that I'm amazed they never bothered to tell me! For example - when my surgeon opened up my skull, he realized that the tumor had invaded the bone, so he replaced the piece with a titanium plate rather than putting the bone back in. However, he never told me that - I found out only after getting the copy of the surgical report I'd requested to be mailed. It was always enlightening to read the doctors' notes after visits and compare them with my own impression of the visit. So much information was in the notes that was left out of our conversations, and it makes me wonder sometimes if we were at the same visit!

If you feel confident in your neurosurgeon(s), that's a very positive thing. That was one reason I chose mine - I just had a good feeling about him. And everything turned out to be OK, for the most part. I had an allergic reaction to medication a few weeks after surgery (it's typical to put post-surgery patients on an anticonvulsant drug, even if they weren't having seizures before surgery, to prevent seizures - not all doctors do it but some do, and pretty much all those drugs are sort of nasty), and he was less than responsive to my calls, but he's a surgeon, not a drug troubleshooter I guess - I had to figure that one out on my own. Being informed helped with that a lot. I think everything would have been much different without the internet.

Ask, ask, ask questions. If you need links to some lists of good questions to ask, I could probably help with that. However, I'd better hit the reply button now before this gets sucked into the netherworld again.

I'll be checking back for updates. Sending strong positive healing vibes to your son and your whole family. Don't forget to take care of yourself - eat well, sleep as well as you can - you'll need your strength, and your babies will need your strength too.

Big hug to you for what you've endured! Thanks for the info you've shared!






And to all of you...thanks for your loving words and support when I was so scared and in such a dark place. It felt really good to come hear and read and re-read your posts!! I'm coming around to the reality of this now and feeling better most of the time. I've just been hugging and kissing my son incessantly and enjoying this time we have now...before he faces such a tremendous challenge at such a young age.
Treasuremapper's Avatar Treasuremapper 04:34 AM 12-05-2006
Oh Starlein. s:

Ask if your son can have a junior bed so that you can crawl in with him as soon as possible. Have plenty of support lined up with your newborn so that your milk supply won't go down due to stress (I know, easier said than done).

I am praying for you and your son.
peekyboo's Avatar peekyboo 01:34 PM 12-05-2006
This is my first time seeing this - hugs and prayers to your family!

My friend's dad had a benign brain tumor - they didn't realize he had one until he was in a car accident and they decided to do routine scans. They operated and ten years later he's still doing just fine.

Also, my friend's son has a benign cyst on his brain - it has caused CP with him, but otherwise he's a big healthy 4 yr old boy, and it has never grown so they just left it where it's at.
joeysmom1729's Avatar joeysmom1729 02:04 PM 12-05-2006
I am so sorry, I sincerely hope all goes well. A great website for information if you need it is: http://www.abta.org/kids/

My thoughts are prayers are with you and your baby during this very difficult time.

tatangel19's Avatar tatangel19 05:20 PM 12-05-2006
that darned ped! You would think they'd know by now a mommy's instincts are worth more than med school! You guys are in my thoughts...
EyesOfTheWorld's Avatar EyesOfTheWorld 03:21 AM 12-14-2006


Prayers and thoughts coming to you and your son!!!
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