surgery date is coming up for my 2year old

[hernandez7]

sorry i haven't been on in awhile.drs keeping me very busy.we have found a new ot specialist for my baby who is actually really great.apparently she can't even bite through a french fry or a chicken nugget.her sensors in her mouth isn't awake and her tongue isn't working properly.her last botox helped for a lil while than she got worse.so the orthopedic surgeon thought we should get the surgery sooner.especially since she is screaming more and more,can't sleep.now pretty much living off of mac n cheese.but more recently she started screaming about her lower back.started while she was in the bath tub.so nuerologist ordered mri to check on teethered cord.and put a hault on surgery till we know whats going on,so hopefully it'll just be one surgery.so as of now mri of back is october1,2010 and surgery is october 8,2010.my nerves are shot.but now the surgeon wants us to do a development study before and after to see where she is.has anyone else had to do this??i am confused.i did make a call to him cause i believe he would get more actual info from her ei worker,early start nurse,pt,ot and speech worker than a quick visit with someone who isn't going to get the full picture of her in a hour session.so frazzled right now.doesn't help knowing 2 children just went through surgery yesterday and 1 is not doing good.questions running through my head,maybe i should canecel the surgery.i am a mess!!!

[hernandez7]

thanks.i have ordered the mris on disk for geneva/i figured i need them with needing to find  another nuerosurgeon anyways.
i completely get what u are saying about why they get cranky.the one little girl got readmitted yesterday she can't eat or drink and apparently is chocking.having issues with her throat.

the lil boy they had a pow wow of all the pediatric nuerosurgeons yesterday and apparently by friday they will do another mri and by monday they are talking about another surgery.apparently the dr left the dura patch where the csf was leaking some expecting it to be better for him but now they are talking about redoing the patch.he is having alot of issues still.and is on a drip for pain.so idk what to think,besides how scary!!

and this nuerosurgeon acts as if i want this surgery done for fun or something!!i just want to smack the crap out of him for putting me through all of this.

[selmaS]

As adults we deal with pain in a similar fashion..we get grumpy....but, we can also communicate how we feel...where a small child may not be able to articulate how they r feeling.
Not everyone will react the same....

Yes, u should be able to call the facility where the MRI's were done and they will upload onto a disk for u....

"selma"

[hernandez7]

thank you selma i will see what i can do about getting the mris.i didn't ever think that you could.

the kids get that mean makes me even more worried.my baby normally is the most loveable child on earth.i can't stand the thought of her beeing mean!!!oh dear God help me

[selmaS]

Regarding the mean  issue...I am thinking it is a coping mechanism...small children are not able to deal with stressors including pain so they act out....

If possible u may want to request copies of as many MRI's as possible...reports are opinions of the radiologist and they can miss something...the MRI's are factual info that can be compared to.

"selma"

[hernandez7]

i have never recieved copies of the actual mris just the mri reports.i have a binder for each one of my kids and i have tried to keep all medical papers and school reports in them for each kid.so i always have the kids information,even if i have to switch drs.i thought it was the best way to keep up with everything.especially since each one of my kids have their own lil issues.i even have their newborn hospital papers to start each folder.

the other boy is out of intensive care but still not doing good she was talking about pain meds instead of nuerosurgery.idk its scary!!!both kids are very mean right now.and the lil boy is in severe pain.they r saying the soonest he can go home is later this week.i feel so bad for both parents.i have started buying dora movies that we didn't have yet so maybe they will grab her attention and get her to rest after the surgery.and i bought her button pjs so i don't have to put anything over  her head.now finding regular clothes that buttons is harder.

what did u have to have done to you legs??sorry not sure.

[*Stormy*]

Miracle do happen...and you are an amazingly brave person and one awesome mother!! Don't you forget that!! You are doing what has to get done and you are fighting for your children.
Did you get copies of your son's MRI? If not, I would, just to have them in the future.

It helped with my legs...so there is ALWAYS hope that it could help with hers too! I'm glad to hear that the other boy is out of ICU...

Take care and keep us updated!
Carolyn

[jessbee82]

Just a story to help lift your spirits -
My baby cousin Olivia was diagnosed with a brain tumor embedded in her brain stem.  For months and months Olivia cried non stop, vomitting almost constantly.  She was in so much pain and my family suffered.  Finally after an MRI revealed the tumor, Olivia got brain surgery followed by chemo.  The nerves that surrounded the tumor controlled her breathing, and heart beat.  I am happy to tell you that 2 years after surgery Olivia is a happy, healthy girl with 0 disabilities.  Miracles do happen, and just know that you are not alone.
I send you a warm hug,
jessbee

[hernandez7]

you know when the nuerologist  did his 1st lumbar puncture he dismissed needing a mri.and at that point i didn't know about my daughters chiari.so when his 2nd one came i didn't think much about a mri cause i still didn't know about the chiari.but when i did find out about it,i asked him to order a mri.he refused he said it was the psuedotumor,well he ignored me to do genevas mri so i went to another nuerologist for her and when he ignored me this time i took jacob to cleveland rainbowbabies i think.well the dr there did a mri and her nurse said it was clear but idk if i believe it honestly.so when his headaches got bad again i came back to the nuerologist who he trusted to do the surgeries b4.

   i appreciate it i am terrified.i am so not ready to see my baby in that kind of pain.but the outcome is what i want her not suffering so much her having a chance to be able to eat normal.i'm hoping it helps with her leg even though he said it won't help the cp but i still have my hopes up its not the cp.lol.i'm sorry i just hate seeing her like this.the other boy s mother forced him to sit up and is finally getting out of icu.thank God!!

[*Stormy*]

I'm so sorry that you are going through this..to have not only one but two children to worry about, it seems extremely unfair!

Just wondering...have they done a MRI on your son to see if he has Chiari too? That would seem like a logical step for me.

Sleeping on the side is a normal thing and so is not wanting to move from one position. The surgery has a very painful outcome, sorry but this is me being honest. I only slept on one side because of the pain and REALLY didn't want to move for anything. If I did move, it would take me hours to find that one comfortable position that didn't hurt. When my son was little he had a neck injury and was put in the hospital for 4 days because he wouldn't move or sit up. It was very scary! Finally, the NL there got him to sit up and move a little and he was like "oh..it doesn't hurt anymore", from that point his head hung a little to the left for a few days and then finally he was all better. He was staying in one position b/c he was afraid of the pain!! It is a normal defense especially for children.
As for the hallucinating, I imagine he is one some narcotics for pain which could causing this issue. You do have to prepare yourself, it will be rough for the first week...but the outcome will be worth it in the end.

I hope I am able to calm your fears just a little bit?

Geneva, you and your family are in my thoughts and prayers xxx
Carolyn

[hernandez7]

they started doing my sons lps before i even knew she had chiari.and they keep having to drop the pressure alot each time.and the lps doesn't seem to last to long so God knows how quickly they are draining it.I have to say it would be my luck.
  
idk if its a problem that they are staying on the right side but apparently the drs had ot and pt come see them.the 3 year old girl got released home tonite but the boy is still in icu.he can't really move at all apparently more like fetal position.if anything it just all freaks me out.

the lil girl slept all nite and was able to keep food and meds  down.now the boy still can't keep anything down.they have had him on morphine something that starts with a t.and all this stuff  through ivs and i know some different meds for the stomach.idk what else to tell them to try.its scary.i am going to start making a list so i am prepared before geneva goes in.

thank you for all the prayers.i have to keep telling myself that geneva will be ok.its just so hard.

[selmaS]

Hi...ur son is only at risk if and I say IF they draw the CSF too quickly......do let them know that it is in the family already.....but him having too much CSF can cause the chiari to develop as well. So either way.....

Sending prayers for u and ur family.

As for the kids sleeping or lying on their sides, I was told to only lie on my side my my NS....and I still do...but it is something I did b4 I was even dx'd.....but , they should switch sides they lie on.....may I ask why this is a problem?

Keeping food down can be a meds issue...I had that for a few days too and until the meds were changed...I was not a happy camper.

Tell them to look at the meds to see if a switch can be made that may help...plus there r meds for nausea that could be helpful.

Sending prayers to ur friends little ones too.

"selma"

[hernandez7]

ok.i know some hate facebook.but these 2 ladies are like me.we don't get all the arguing over the color or anything,we just want support and answers to work through these issues with our kids.both of them had their children go through the surgery on the 15th.one family is in florida and this was his 2nd surgery.1st was in june.they had to open his dura..they both want to stay on their side,both are having a hard time keeping anything down.both are swollen.the one in florida is 6 and hallucenating,doesn't realize who his mother is.my heart breaks reading what the are going through.

the girl is 3 and half.and trying to keep food down but having a hard time.so mine is younger.which is really hard for me.it was her nuerologist who ordered the mri the nuerosurgeon just wanted to push up the surgery.i don't feel as though he needs another dr to evaluate when he can get everything from her pt,ot,speech and early intervention,and early start nurse.and they will update her afterwards also.she is 39 months old almost 40 months her pt did a overview of her yesterday and she is barely at 23-24months.so developmentally she is behind and ot is still getting through her evaluation.(remind u the first one i really didn't get along with)

i know i have to do the surgery cause i understand she will get worse.apparently the newest mri done showed it was compressing more.but didn't grow thankfully!!i don't get it all.i will keep you guys updated as much as possible.

i started a thing on caring bridge for her.still work in progress.lol just to keep everyone informed for her.

my son with psuedo tumor worries me.we went to see nuerologist on monday a couple weeks ago.the next day he had a emergency lumbar puncture.pressure was back up.now i have heard that with them keep lowering his fluid he is at risk for chiari.but the dr doesn't want to do a shunt.i am very overwhelmed.and lets just say this last lp was really bad for him,and he is aspergers autistic so now he is refusing to do anymore.so idk what to do!!

[selmaS]

Hi, and thanks for the update, I understand u have been very busy and frazzled....like Carolyn I can understand ur concerns and ur fears.

This other child that is not doing well...do u know what is going on?....Not everyone responds well to meds...and it could be a set back due to meds....

And we all consider not having surgery once it is scheduled, as we all get scared...it is major surgery...but, we all know how long it took to get the right dx and dr...and y we did it.

Things can get worse if u go thru with surgery or not.....chiari does progress...and if ur little one has tethered cord as she grows she may have more issues.....I do understand how difficult it is to make this choice for someone other than urself...and a small child ...

I am sure after u have a convo with the NS u may feel more at ease.
Sending prayers for ur nerves as well as ur little one to feel better soon.

"selma"

[*Stormy*]

I'm so sorry...what a scary position to be in..I just couldn't imagine going through this with one of my boys.

I am glad to hear that you have found a good specialist..that is surprisingly a very hard thing to do.

I don't blame you for your nerves being shot!!! You are a really tough person, not all could make it through what you are going through...so keep your chin up and try to relax (I know easier said than done).

I would think that he is wanting to do the study mostly b/c she is a child and therefore will still need to develop a lot. I think it is a good idea that he is doing this b/c then they will be able to determine how much of a success the surgery is.

Try and wait until this MRI is done...I definitely wouldn't go into surgery until you hear the results and get the opportunity to talk to your NS. No one should have to take their child into surgery when they have questions like yours and you need to be reassured. My suggestion is to call his office and insist to speak with him before you go into surgery.
Also, I have heard WAY more success storied with Children then I have heard about complications. Keep in mind, you are always more likely to hear the bad stories more than the good.

I am hoping and praying for you...please let us know how the MRI goes!
Carolyn