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Birdbomb
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« on: October 06, 2006, 03:59:30 AM »

Fay just called me to let me know how Scott's VNS removal went.

Scott is doing well, he tolerated the surgery, but the cardiac moniter keeps going off right now.  His heart rate is fluctuating, the doctor is being notified but the hospital staff doesn't seem too concerned.

The generator was removed with no problem.  The leads were in terrible shape.  There was an awful lot of scar tissue.  So much scar tissue that the doctor was not even able to get to the electrodes.  The coils were "embeded", in fact, the surgeon had to leave more of the leads in him than he wanted because of the scar tissue.

Then the doctor handed the generator to Fay.  

The suregon told her it was a good thing that they removed it.  Those leads were pulling badly on his nerve.  It needed to come out, but his electrodes cannot be removed.

 :bigarmhug:  :bigarmhug: Take care Fay and Scott! :bigarmhug:  :bigarmhug:


You can't call Jen until after 7 tonight her time or you CAN call any time  all day Saturday and Sunday
« Last Edit: October 06, 2006, 04:19:08 AM by Birdbomb » Logged

"If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)
VNS implanted Sept 02, turned off Dec 04, Generator ex-planted Nov 07
Electrodes are in me for LIFE!
katrinajessen
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« Reply #1 on: October 06, 2006, 08:26:21 AM »

THANK GOD SCOTT HANDLED HIS SURGERY WELL. PLEASE IF YOU SPEAK WITH HER AGAIN TELL THEM BOTH THEIR IN OUR PRAYERS. I CANT WAIT NOW TILL FAYS BACK ON THE BOARD TO GIVE US ALL THE DETAILS GOOD/BAD OF THE REMOVAL, SINCE THIS IS PROBLEY WHAT BRANDY WILL BE GOING THRU SOON. THANKS FOR THE UPDATE. IVE THOUGHT ABOUT THEM ALL DAY. :hbeat: KATRINA
« Last Edit: October 06, 2006, 08:26:55 AM by katrinajessen » Logged
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« Reply #2 on: October 06, 2006, 10:00:16 AM »

Hello Friends! We are home. I had planned on taking a nap with Scott but couldn't rest until I gave an update.
The pulse ox machine decided to malfunction at the worst time. All the docs and nurses came running in with all kinds of equipment but after running tests and making Scott throw up twice they figured out it wasn't Scott but the darn machine. One Neurosurgeon wanted Scott to stay at least 24 hours while the one that actually did the surgery didn't feel he needed to stay unless there were problems. He is still throwing up but is calming down now. His color and behavior are great so i feel like he is ok. More worried about the throwing up and the diet combo more than anything. The coils are imbedded and were not removed but not as bad as the first Neurosurgeon told me they were. They did leave some of the wire that they capped. I asked the Neurosurgeon if we could keep the VNS and explained why- I didn't want Cyberonics to have the pleasure of getting it back. I want them to wonder what ever happened to the "User Error # so and so". The Neurosurgeon told me he'd find out if we could have it or not (thought they had to be shipped back to Cyberonics) and when he didn't get an answer by the time he was finished, he cleaned it up, sterilized it and sealed it inside a sterilized jar. When we got home Scott put it on his nightstand as a dust catcher. The wires were too bad of shape to save. He told me that the wires were imbedded into the muscles by the scar tissue so when he moved the wires were pulling on the vagus nerve "pretty bad" plus pulling on the muscles too. I hate to think what could have happened. We are lucky that his problems weren't worse than they were and it's a good thing it was removed when it was too. He also told me that it didn't look as bad on the outside as it did on the inside. I'm just glad it's over with and glad we are home. And thank God, still no seizures!!!! His voice hasn't changed at all and he is eating, drinking and swallowing ok and held down what little bit of a meal I could get him to eat so am hoping we are getting back to normal now.
Thank you very much for all the thoughts and prayers. It really means a lot to us.
 
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Petunia
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« Reply #3 on: October 07, 2006, 07:44:04 AM »

oh, Fay! I"m so happy for Scott  :D  
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Complex Partical seizures since age 12. Right lobectomy in 1992, VNS Feb. 2003, removed Feb. 2004. I'll just keep trying.
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« Reply #4 on: October 07, 2006, 10:31:12 AM »

It was great talking to you yesterday. Is Scott still throwing up? I hope he is having a better day today and even better tomorrow. Give him a kiss for me.


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« Reply #5 on: October 07, 2006, 03:25:38 PM »

Checking in on Scott.  How's the vomiting, any better?
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« Reply #6 on: October 07, 2006, 04:50:55 PM »

Scott was better today in some ways and not in others. He quit throwing up late last night but his neck pain is worse. Yesterday his voice sounded normal and he didn't seem to have any problems swallowing but today his voice is really hoarse and he's coughing and choking just a little bit when he eats and drinks. He cannot move his neck at all which is understandable due to having to remove some of the muscle to get the generator and wires. There is slightly more swelling and the bruising is starting to show pretty good. He started itching about 2pm but so far no rash. I am sleeping with him to be on the safe side.
If he is still hoarse and coughing and choking on Monday I am calling the Neurosurgeon. His blood pressure and pulse ox has been normal and his color looks fine so I'm hoping it's just from the breathing tube rather than more vagus nerve damage. He's had at least 8 different surgeries and he's never done this afterwards so am watching him more closely. If it gets worse I'll call the on call neurosurgeon.
I am still very pleasantly surprised that he has remained in large ketosis and there have been no signs at all of any seizures. I am beginning to believe that I really do have a miracle with the ketogenic diet so i should just relax and quit worrying about the diet not working or the seizures coming back now. It seems so strange not seeing any at all especially yesterday or today. All the other surgeries he had more seizures than normal starting a few hours after the surgery and lasting till we either increased a med or added one for a few weeks.
 
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katrinajessen
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« Reply #7 on: October 08, 2006, 01:04:42 AM »

:bigarmhug:  TO SCOTT THIS MORNING..... LOTS OF LOVE SWEETY FROM THE BLUEGRASS STATE. FAY, I LOOK FORWARD TO TALKING TO YOU LATER IN THE AFTERNOON. STAY STRONG. KATRINA
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« Reply #8 on: October 08, 2006, 08:58:44 AM »

:im_033: sorry fay about missing your call today. ive had some things come up and was unavaliable to take your call. ill be in late tonight, please try and call me tommorrow around 1-2 pm... :Thanx:  katrina give scott our love today :)  
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« Reply #9 on: October 08, 2006, 11:20:44 AM »

Hey Katrina. I'm sorry that I fell asleep on the sofa with Scott so didn't wake up until about 3pm. After I gave Scott his pain med and his snack, I called you. He woke up 3 times during the night and had trouble going back to sleep which threw both of us off all day today. I've been dosing off and on and so has Scott. His voice is almost normal again and he's not coughing or choking nearly as much so we think the irratation was from the breathing tube they put in to do the surgery. i think things are getting better with him now.
I'll try to call you at those times tomorrow. Scott can't go back to school until next Monday and I have no idea what he (or me!) will be like tomorrow.  
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« Reply #10 on: October 08, 2006, 03:51:26 PM »

I know what you can do REST!!!!! Do nothing except what you or Scott need. :)

 :im_033:    Labrat     :im_033:
 :balloon:  :)  :balloon:  
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« Reply #11 on: October 09, 2006, 01:06:32 PM »

Hey LaBrat and Katrina. Today we finally got several hours of decent sleep so we both feel better tonight.
Katrina- I'm sorry but we were asleep so missed the times to call you. If he sleeps through tonight I think we'll be able to get back on track with the normal times again tomorrow. When you only get a few cat naps for a few days instead of sleeping a few hours at a time, you get exhausted and we were both really exhausted! We'd both be in the bed right now but I've got to go to work in a few minutes so won't be home until about 2 am. I don't trust leaving Scott here so he's going with us. We're taking a camping cot so he can sleep while we work. is there a time I can call you tomorrow? I really would like to talk to you!  
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« Reply #12 on: October 09, 2006, 02:05:57 PM »

:) Glad things are a little smoother. Hopefully everything will continue to improve.

I was never able to talk to the reporter from WRBL. The first segment was on tonight at 6:10 p.m. The second segment, mostly of my doctor will be tomorrow night at 6:00 p.m. She sent an e-mail and called when I went to the store. My doctor had given the reporter a VNS battery pack and she showed it after the report part went off. It will be interesting to see my doctor's part tomorrow.

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katrinajessen
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« Reply #13 on: October 10, 2006, 04:28:40 AM »

FAY, I TOO AM SORRY THAT WE KEEP MISSING EACH OTHER. BUT RIGHT NOW YOU JUST TAKE THE TIME TO GET RESTED UP AND TAKE CARE OF SCOTT. I HAVE BEEN REAL BUSY ALSO WITH BRANDY. SOME DAYS SHE SEEMS TO BE HANDLING EVERYTHING GOING ON, THEN THE NEXT SHE FALLS APART ON ME. I SHOULD BE AROUND THE HOUSE IN THE AFTERNOON SAY NOON TILL 5 ON 10/11/06. I HAVE SOME SHOPPING TO DO BE4 THAT. AND THEN OF COURSE WE TAKE BRANDY BACK TO THE SURGEON FOLLOWUP ON THURSDAY AT NOON. IVE BEEN TRYING TO WRITE DOWN EVERY SINGLE THING I CAN THINK OF TO ASK. I MAY EVEN PUT A NEW POST UP TODAY FOR SUGGESTIONS, DONT WANNA FORGET NOTHING. AND I LIKE YOU ARE SLAM WORE OUT BUT KEEP GOING. WE WILL CHAT SOON. PLEASE GIVE SCOTT OUR :lips:  :lips:  :lips:  :lips: FROM BOTH BRANDY AND I TODAY. SURE DO THINK ALOT ABOUT HIM LATELY.TAKE CARE...KATRINA
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« Reply #14 on: October 10, 2006, 06:23:31 AM »

Hey Katrina. I'll call you tomorrow then and I look forward to talking to you too.
I have a couple of questions and hope you don't mind my asking. Does Brandy have any other problems other than the pain? Also how did he know there was nerve damage? Just curious is all. Our two neurosurgeons (I still don't know how we came up with two but I'll take em both) don't give very much info. I am assuming it's because Scott had his implanted when he was younger than 12 years old or else they really don't know.
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katrinajessen
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« Reply #15 on: October 10, 2006, 07:28:34 AM »

FAY, BRANDY STARTED COMPLAINING OF SEVERE PAIN ABOUT A YEAR OR SO AFTER IMPLANT. WE TOLD HER NEOROLOGIST MANY TIMES. HE BLAMED IT ON STRESS. THE PAIN IS IN HER NECK FRONT AND BACK, HER CHEST. THO HER FAMILY DOC COULDNT FIND NOTHING ELSE WRONG WITH HER SENT HER BACK TO NEOROLOGIST/ HE JUST KEPT SAYING IT WASNT RELATED TO VNS. THO SHE WASNT UNDER STRESS. SHE JUST RECENTLY GOT REFLUX PROBLEMS. UP UNTIL THE SURGERY WE THOUGHT SHE JUST HAD TO DEAL WITH THIS PAIN SINCE HER TOP DOC SAID IT WAS NOTHING. NOW WE KNOW THAT THE VNS WAS CAUSING IT ALL ALONG. OR WE ASSUME. AS FOR THE NERVE DAMAGE, THE SURGEON CAME OUT TOLD US SHE DID WELL WITH THE BATTERY IMPLANT, BUT THAT SHE HAS SEVERE NERVE DAMAGE TO THE VAGUS NERVE. THAT IT WASNT NOTHING THAT JUST HAPPENED, BEEN AWHILE GETTING THAT WAY. ALSO STATED THAT IT CONTROLLS STOMACH, DIG.SYSTEM AND BOWELS. SAID HE SAW ALOT OF SCAR TISSUE. IT WAS A HIGH RISK SURGERY TO TRY AND FIX. AND THAT WED TALK ABOUT IT MORE AT FOLLOW UP..ALSO THAT HE WASNT SURE IF SHE WAS GETTING FULL STIMULATION FROM VNS DUE TO THE NERVE DAMAGE OR NOT. :angel: KATRINA  ALSO HAS HAD SEVERE MIGRANES. THEY NOW SAID SOMETHING ABOUT SENDING HER TO A PAIN CLINIC TO HELP HER MANAGE HER PAIN, SINCE THEY WONT GIVE HER NO MEDICATION FOR IT. :Really Mad:  WONDER HOW THEYD LIKE IT TO BE IN THAT TYPE OF PAIN 24-7 : wtf1 :  
« Last Edit: October 10, 2006, 08:16:01 AM by katrinajessen » Logged
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« Reply #16 on: October 10, 2006, 10:33:55 AM »

Thanks for telling me. I'm trying to figure it out and all of it makes sense to me. Been through hell and trying to get back now ourselves!
The 1st thing the VNS did to Scott was that he simply stopped growing. He has only grown 3/4 inches and has gained 9 ounces since it was implanted back in Feb 2000. We thought he was starting puberty but the endocrinologist nurse measured and weighed him wrong so we don't know if he is or not yet. he is 17 1/2 years old and his bone and hormone levels are that of a normal 10 to 12 year old boy. Mind you that Scott was 11 years old when the VNS was implanted.
The next problem we had was that while the VNS was stopping 80 to 90% of the seizures, it was also taking away his appetite and thirst so after he developed ulcers, reflux, slow stomach emptying and also lost 21 pounds he had to have a g-tube placed. Then the seizures started coming back and we found out the battry was dying to the VNS. So the generator only was replaced in 2003. From then on things got much worse. 8 months of pure hellish pain and after visiting every hospital emergency room in the metro Atlanta, Georgia area he was finally diagnosed with Intracranial Hypertension and Papilledema. We spent a few weeks trying to figure out why the meds weren't helping so both the Neuro and the Neuro-optic docs got together at a Neuro appt and while the neuro made the VNS come on, the neuro-optic was looking at the optic nerves and saw both optic nerves bulge even more. What was interesting was that the left optic nerve bulged even more than the right one did. They immediately decided to turn the VNS totally off. It took over 2 years to get the Intracranial Hypertension and Pappilldema into remission and both can come back without warning. He has vision loss from it and he is still very light sensitive so has trouble with bright sunlight and lights in stores, school, etc. He also experiences severe migraine headaches about 3 times a week and takes nothing for pain. He just wants to lay down in the dark and not move until it's over with. Sometimes a cold, damp washcloth helps a little.
He also had periods where he'd turn really pale and his blood pressue would drop causing him to ned oxygen. At the time Scott had hundreds of seizures a day and we thought these were seizures. We didn't realize they were crebral hypoxia attacks due to the wires to the VNS pulling on the vagus nerve until he had been totally seizure free a few months after starting the diet. There was no signs of seizures but yet he was still doing this. A heart specialist confirmed that it was very possible that the wires pulling on the vagus nerve could cause this. Plus Scott had also been complaining about his neck hurting and feeling it pulling every time he moved his neck. You could even see it plus he had to hold his head tilted because of it. Thank God it's out now. We have noticed several changes already. He's mentioned several times since sunday that he's hungry or thirsty which we hadn't heard since 2000 and he hasn't turned pale or his blood pressure just drop since it was removed this past Friday. His blood pressure is a low normal now and we haven't had to use the oxygen since being home (which seems really weird). Hopefully this means that there wasn't too much damage done to his vagus nerve but rather that the pulling and the scar tissue was causing the problems. time will tell I guess. Both of Scott's Neurosurgeons said the scar tissue was really bad and they had to remove some muscle tissue to remove the generator and the wires so he'll take longer to heal and it will be more painful too. Just awfully glad it's finally out and everything went as well as it has especially since he's on the ketogenic diet. Still no signs at all of any seizures! Thank God!
Wow! I didn't write a book....!
 
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« Reply #17 on: October 10, 2006, 11:10:33 AM »

Why do the doctors not give her anything for the migraines? That is unhuman! I had migraines while on so many antidepressants. Everytime one was added or stopped the migraines started. My neurologist perscribes Repax 40 mgs. It will knock out a migraine in less than 10 minutes. I wish some of these doctors could feel a portion of the pain their patients feel.

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« Reply #18 on: October 10, 2006, 12:16:18 PM »

Midrin works well for migraines too.  Maybe you need to consult another doctor.  There has to be something for the pain she's experiancing.  My medical care is through the military hospital and every once in a while I run across some idiot doctor who thinks people should learn to live with their pain.  That 's cruel an inhuman.  But then there are other doctors who hand out oxycotin like halloween candy!

I am so glad Scott is finally HUNGRY!   : essen :   Any doctor who would NOT agree his problems were CAUSED by VNS Therapy ® should be taken out and publicly flogged!  Fay, you have been such a rock! and how parents suffer for the sake of their children.  We try to do what we think is best, we seek out all the information available to us and yet, I wonder just how much of Scotts' problems were things Cyberonice was aware of and maybe even deviate about.
: nono :  
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"If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)
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Electrodes are in me for LIFE!
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« Reply #19 on: October 10, 2006, 12:42:41 PM »

We were offered Topomax for the migraines. No thanks!!! The VNS taught me that parents need to really look at the ages the meds and implants are approved for. Being a "User Error" by Cyberonics and the things he's already gone through is bad enough so I imagine if there are problems with the meds, it's our fault too. I don't want any part of it. Like Scott say's " I not taking no seizure or headache medicine. I don't like to feel weird and the medicine makes you feel weird and not think right". And he would know!!!! He took the Percocet for pain Friday, Saturday and Sunday then will only take it at night since Monday. He doesn't like the way it makes him feel.  
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katrinajessen
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« Reply #20 on: October 11, 2006, 01:22:45 AM »

MORNIN ALL, FIRST I NEED TO CLEAR UP A FEW THINGS. BRANDY DOES TAKE MIDRIN FOR HER MIGRANES. HAS FOR AWHILE NOW. SHE IS ON LAMICTAL 225 MG 2X DAY AT THIS TIME. WHEN SHE HAD HER SURGERY THEY SENT HER HOME ON LORATAB 5'S. WHEN THOSE RAN OUT I CALLED THE NEUROSURGEON WAS TOLD THEY WOULDNT GIVE HER NOTHING ELSE TO CALL HER FAMILY DR. WHICH I DID, WAS TOLD THAT SHE NEEDED TO GET HER MEDS FROM NERUO. THATS WAS A DEAD IN STREET.HER WORSE PAIN IS IN THE NECK AND CHEST AREA. BEEN THIS WAY FOR AWHILE. THEY STATED THEY WANTED TO SEND HER TO PAIN CLINIC AT SOME POINT. I BELIEVE THEY KNOW THE PAIN IS COMING FROM VNS, BUT DENY IT FULLY.I ALSO THINK THAT AFTER TOMMORROWS FOLLOW UP THEIR NOT GONNA LIKE " THE MAMA" TO MUCH. CAUSE IM GOING IN FULLY LOADED. SHE SAID SHE WASNT LEAVING THE OFFICE TILL WE GOT THE ANSWERS WE NEEDED AND THEY TREATED HER PAIN. SO GUESS WE WILL BE THERE FOR AWHILE.. THATS OKAY CAUSE WE GOT ALL DAMN DAY TO DEAL WITH THEM. NOTHING IS MORE IMPORTANT THAN THIS TO ME.THE PAIN THAT WORRYS ME SO IS WHATS IN HER NECK AND CHEST. AND HOW CAN THEY DENY HER MEDICATION WHEN ITS OBVIOUS SHE NEEDS SOMETHING? HOPE THIS CLARIFIES WHAT I WAS TRYING TO EXPLAIN. :bigarmhug: TO SCOTT THIS MORNING.  :im_033: KATRINA
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« Reply #21 on: October 11, 2006, 01:47:02 PM »

I too suffer from migraines, I have tried Axert several times and I have been very pleased with it.  I don't know if it's approved for children though.

Glad Scott is doing okay. Tell him I have been thinking about him and very proud of him for being an excellent pateint.  
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« Reply #22 on: October 12, 2006, 02:50:41 AM »

I let him know this morning what you said. He told me to tell everyone "thanks for the prayers and all". I also want to say thanks too. Don't know what I would have done without all of you besides freak out. I think I put Birdbomb through hell calling her at the worst possible times. I'm surprised she's still talking to me!!! I love you guys!  
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Birdbomb
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« Reply #23 on: October 12, 2006, 02:55:47 AM »

Aw Fay!  You're family!   :bigarmhug:

Don't sweat the small stuff.
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"If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)
VNS implanted Sept 02, turned off Dec 04, Generator ex-planted Nov 07
Electrodes are in me for LIFE!
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« Reply #24 on: October 12, 2006, 02:59:37 AM »

I second that Dixie chick!  : clap2 :



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katrinajessen
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« Reply #25 on: October 12, 2006, 10:14:20 AM »

FAY. IN MY EYES YOU ARE A GOD SEND. YOU HAVE BEEN THERE FOR ME THRU THIS HELL IM GOING THRU NOW. THO, I HAVENT GOTTEN TO TALK TO OTHER MEMBERS PERSONALLY YET. IM SO GRATEFUL THAT WE AS A GROUP HAVE THIS BOARD THAT BIRDBOMB CREATED FOR US. I DONT KNOW WHERE ID BE RIGHT NOW WITH OUT ALL THE ADVICE AND ENCOURAGEMENT GIVEN HERE. I FEEL LIKE FAMILY TOO YOU ALL. AND IM ALWAYS HERE FOR ANYONE WHO I CAN LEND AN EAR TOO.  :hbeat: KATRINA
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« Reply #26 on: October 25, 2006, 06:39:50 AM »

Fay-

I am glad things are looking better for Scott. You are in my prayers as wwll as everyone else on this list. If I don't write offen don't be offended. It is about all I can do these days is just keep my head above water. We have a biopsy coming up, and IEP at school and more medical issues than we need right now.

My thoughts are with you all!

Gina :bigarmhug:  :crazy:  : worthy3 :  
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« Reply #27 on: October 25, 2006, 08:41:00 AM »

Hey Gina. I know what you mean. Scott isn't doing good at all either. I'm so freaking mad at WalMart pharm here i can't see straight. Scott is having major asthma problems brought on from aspirationing on some kool-aid last friday. he started wheezing and still is. I took him to the pediatrician who said he had mild pheumoinia. Presvribed a certain brand of Amoxil due to Scott being on the ketogenic diet and they still haven't gotten it in. To top that off he had a Neuro-Optic appt today and his optic nerves are worse. Not too much worse but his visual field tests (they did it 3 different times after 2 diff Neuro- Optics saw him) are worse than the last ones. They will call me about the results of more tests that were done and are now concerned about the headaches possibly being the Intracranial Hypertension coming back versus migraines that we thought they were. The thought of having to put him through another spinal tap to confirm that the IH is out of remission again terrifies me. The last one put him in the hospital for 2 weeks.
It's just so soon after his surgery that it's too early to tell anything. Plus we hadn't seen the Neuro-optic in 6 months so don't know if this was going on before the VNS was removed or not. somthing else to try not to worry about.
One of my neices is getting married Nov 11th and we have about 10 to 12 people from out of state (Minnesota) coming down to stay with us from Nov 3rd to Nov 14th. have no idea what everyone will do if we end up in the hospital. They'll have to fend for themselves I guess. At least they know that they can be at home in my house even if we aren't here.
Are things worse with her since we last talked?! God, I hope not! Been praying for you all.
I'd never get mad at you. GBean. I understand, believe me! We both have a kid that is extremely medically fragile and we are both trying out best to do everything we can to help them. heck I've pretty much in and out here myself lately. The hours and days are just flying by with so much going on that it's hard to sit down in front of the computer more than a few minutes at a time. i know that your life is a little bit more complicated than mine is though. I'll call you when i get the test results back.  
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« Reply #28 on: November 03, 2006, 11:17:03 AM »

How is Scott doing?  It's been a few days since you have updated his condition?

 
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« Reply #29 on: November 03, 2006, 12:59:05 PM »

Thanks for asking about him. He seemed to be getting better for the past few days but yesterday came in from school coughing and choking again then started back wheezing again. Seems to be right back where he was 3 weeks ago now. Will be taking him back to the pediatrician tomorrow morning. I haven't gotten anywhere at all with the GI doc's nurse who keeps telling me she'll call me back but doesn't. Been playing phone tag with everybody two weeks now and enough is enough.
He saw the Neuro- Optic over a week ago who is concerned that the migraines might not be migraines because his visual field tests (thy did 3 the same day) were worse than they have been and his Papilledema looks slightly worse. They ran more tests and are to get back with me as to what they think we need to do when they get all the results back and talk to the Neuro and the Pediatrician.
In order to check the Intracranial Hypertension (also Pseudotumor Cerebri) which is what caued the Papillidema a spinal tap has to be done. I really don't want to put him through that until we see what the results of the tests show first. If they still feel that he needs one done then we'll have it done. Not looking forward to it all if he needs one.
His incisions are healed up although he is still not wanting to hold his neck normally or turn it normally though. It still hurts. They had to remove some muscle tissue in both his chest and his neck because the wires were imbedded so this is why he's still sore. It seems somebody told me that it takes longer for muscle to heal.
How are things going with YOU?! It's been a while since I've seen you here. Hope all is well.
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« Reply #30 on: November 03, 2006, 01:37:10 PM »

Fay-

Is Scott asperating on fluids still?? They taught us that if you tuck your chin to your chest and drink sitting up with a short straw in a cup that the fluid will go down without asperation with the help of the tongue covering the tube to the lungs. Might try it if he can put his head down.

Gina
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« Reply #31 on: November 03, 2006, 02:12:25 PM »

Thanks for the tip! I'll def get him to try it. Any suggestions with food?
I honestly think he's asperating on both food and drinks plus his reflux is worse too. It's driving me nuts trying to figure it out and then not getting past the nurse is even more fustrating. I'm def bringing it up to our Pediatrician in the morning though. Enough's enough and I've def had enough!
Yes, Scott has been holding his head down- like he's looking down all the time and simply slightly moves his head to the left or right while moving his whole body to turn to look at something. He simply can't hold his head up more than 3 or 4 minutes-if that long. I wonder if he needs OT or PT or just time for those muscles to heal. Will talk to the pediatrician about that too.
 
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« Reply #32 on: November 05, 2006, 01:49:48 PM »

Fay-

See if you can get him in to see a swallow therapist. They can test him to see what is happening. Don't let him eat anthing liquidy like watermelon.  Try thick things like oatmeal or bread and then go to something less thick and see what happens. Then you will know how think things need to be.

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« Reply #33 on: November 05, 2006, 02:42:23 PM »

He's on the ketogenic diet so can't have anything like oatmeal or bread. It will be really hard to do a swallow study with the keto foods simply because the meals are so small (most of his meals will fit into a 1 cup measuring cup!) plus not enough textures, liguids, thicknesses, etc in a meal either. He can't stop the diet even long enough to do the test because he'll come out of ketosis and would have seizures. One gram, which is about 2 drops of milk or one  tiny Cheerio cereal round, can cause a seizure or can even cause non stop seizures- no joke. We start weaning him off the diet in December but it takes at least 6 to 8 months to a year to come totally off the diet. If you go any faster you run the risk of the seizures coming back.
 
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« Reply #34 on: November 11, 2006, 04:21:39 PM »

When Sedona did the swallow test they used barium. This is not a food item. They started with thick on a piece of food. They asked us what she could have. Then she drank the barium thick, then slighly thined and so on. By the time they got to the step before thin she was on to them and refused to swallow. Our test was inconclusive because of this. But we all knew that she was asperating. The purple face and lips after watermelon was their first clue.

Gina
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« Reply #35 on: November 12, 2006, 12:24:20 PM »

Scott still might not be able to have barium due to the carbohydrate (the binder) in it. Any carbohydrate turns into sugar (the body can't tell the difference between one carbohydrate and another) which in turns affects the diet even if it doesn't show on the keto stick. The keto kids body runs on fat (called ketosis) while a normal body not on the ketogenic diet runs on carbohydrates (which gets turned into sugar by the body). It is really way too complicated to explain here. Not enough room either!
Scott's not turning blue like he did before he had the VNS removed and his blood presure is staying perfect so that part has been a huge blessing. He doesn't seem to be choking quite as bad as he was but he's still coughing a lot and clearing his throat a lot. Plus his voice sounds hoarse like he has a cold (but he doesn't). His headaches are worse too. He wakes up hungry and eats breakfast fine but although he says he's hungry for his other meals (and snack) he feels full after the first few bites and will sometimes dump the rest of the meal in the garbage before I can stop him.
I am having to watch the clock to make sure he eats on time plus watch him to make sure he finishes everything too. If he loses any weight I'm betting he'll have to have another g-tube placed. It really wouldn't bother me at all if he needs one placed again.
How is Sedona doing now? have you had the tests ran yet and any results yet?
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« Reply #36 on: November 12, 2006, 01:05:43 PM »

Checking in on Scott - glad to see an update on Sedona as well!  Good luck with the upcoming IEP and biopsy.  


Sending out lots of postive and healing thoughts.


 
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« Reply #37 on: November 17, 2006, 05:21:12 PM »

You know Scott's swallowing/coughing problems are most likely from the intabation tubing.  Some of those anestheiologists can be brutal when they jam that thing down your throat.  The trauma from that really seems to take a long time for the body to recover.  The more surgeries you have the worse it gets too.
(speaking from my own experiace here)

Is he getting any better? Maybe is he can have more frozen juice bars or ice to suck on to reduce the swelling.....
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« Reply #38 on: November 18, 2006, 04:57:20 AM »

Yes, he IS better with the swallowing (not choking) but he's still coughing and clearing his throat an awful lot. But I am extremely concerned about his headaches and eye problems. I am beginning to believe that the Intracranial Hypertension and Papilledemaare coming out of remission. His headaches are getting worse so he's coming in from school and simply lying on his bed to watch TV or play his game boy-with the lights out of course and doesn't want to move. Even told his best friend he didn't want to go bowling because the noise and the lights "hurt too bad". He told us last night about 10 pm that he seews thingsgo away again" and that everything looks "smeared" sometimes. NOT good at all. he had a Neuro-optic appt a couple of weeks ago and although his optic nerves looked "good for Papilledema" and his "didn't appear to have changed", she was concerned because his visual fields tests (they did 3 that day) were worse than she'd seen them in a long time. He simply is not himself at all.
Still no seizures (thank God!) plus his blood pressure is still staying normal and has not needed any oxygen at all either. He is hungry and thirsty in the mornings and at lunch but after that he doesn't want to eat or drink at all. It makes him feel sick to his stomach. His voice sounds like he has a really bad cold but he doesn't.
We have our 6 month keto/neuro appt on Dec 6 but Idon't think this needs to wait until then so am calling him Monday. We were planning on starting to wean him off the diet and don't know if this will change anything or not. Hopefully it won't. We are ready to come off the diet even though it will take almost a year to do. But overall he is better than he was a few years ago so I keep reminding myself that things could be much worse. Just praying he doesn't get to that point ever again.
He does enjoy homemade sugar free koolaid popsicles and flavored crushed ice.
That makes sense about the intubation too. Scott used to have to be intubated because of severe asthma attacks plus he went into nonstop seizures a lot too. that don't include all the surgeries he's had. i was (still am a little bit) always worried about the possibility of him needing oxygen 24/7 because each time he's admitted and intubated it takes longer to wean him off the oxygen. I can handle the oxygen as needed as we've been doing that for years with home oxygen but it's scary to me if he'd need it 24/7 if that makes sense.
I'll keep you all posted as best I can. Fay
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« Reply #39 on: November 18, 2006, 05:24:24 AM »

I can't imagine the experience that your whole family has been through. As a mother, I can't imagine the pain you have experienced. It hurts when your child hurts.

Let us know about what you find out Monday.

Give Scott a hug for me.

 :im_033:   Labrat    :im_033:  
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« Reply #40 on: November 18, 2006, 07:45:16 AM »

Thanks Labrat. It is 2:22 pm here now and Scott has only left his bed to eat and use the bathroom. Has hardly said a word to anyone. This is not my happy, laughing boy at all. Monday can't come soon enough. Ill keep you posted.
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« Reply #41 on: November 18, 2006, 01:47:05 PM »

Fay-

As always my thoughts and prayers are with you.  I hope that nothing is wrong on Monday and you worried for nothing.  I totally understand how you feel about Scotts moods changing.  When I have a headache or migrane I can't eat either.  I feel queasy and just swallowing hurts my head.

Give Scott a hug from us and that way you will get one from us too.

Love and Friendship,

Gina :bigarmhug:  :bigarmhug:  :bigarmhug:  :bigarmhug:  
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« Reply #42 on: November 18, 2006, 02:17:56 PM »

Thanks Gina. You and Sedona are always in my thoughts and prayers too. Sedona has it much worse than Scott does so I worry about you too. I know those feeling of helplessness all too well. I pray that both our kids get better soon. Lots of hugs back to you guys.... :bigarmhug:  :bigarmhug:  :bigarmhug:  :bigarmhug:  :bigarmhug:  :bigarmhug:  :bigarmhug:  :bigarmhug:  :bigarmhug:  :bigarmhug:  :bigarmhug:  
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« Reply #43 on: March 03, 2007, 09:32:38 PM »

Hey Fay, how about a current update on Scott.  It's been a while.  I know he has finally gotten a little bit of height.
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« Reply #44 on: March 04, 2007, 12:14:50 PM »

Sure Target. As some of you may know Scott will be 18 years old in May and up until very recently he hadn't started puberty and had the hormone levels and bone age of a 10 to 12 year old boy. Before he had the VNS implanted he was always right where he needed to be weightwise for his height and was always considered very normal at every doc appt from birth (which he weighed 7 pounds 8 ounces and was 19 inches long). He quit growing in height 2 months after the VNS was implanted and he started losing weight about 8 to 10 months after the VNS was implanted. After he lost 21 pounds we had to have a g-tube placed.
 A lot has happened since he had the VNS removed back in Oct.
He HAS grown AND has started puberty too! He went from 4 feet 9 inches tall the day he had the VNS removed to 5 feet 1/2 inches tall 2 weeks ago at our last Neuro appt. He has also gained weight- going from 92.5 pounds the day the VNS was removed to 100.5 pounds 2 weeks ago at the same Neuro appt. Mind you that Scott only grew less than 1/4 inch the entire 7 YEARS he had the VNS implanted and he only gained 5 ounces of weight the entire 7 years too. The weight he gained all these years were the weight he lost and the reason why he had to have a g-tube placed. He is also in puberty now and is sporting a very visible mustache and is starting to grow the peach fuss of a beard. If we shave it off he will still look like a 12 to 14 year old kid so we are letting it grow out a little before his first shave. His voice has also changed but I honestly don't know how much is puberty and how much is vagus nerve damage. His voice was totally different after he had the VNS removed so it's impossible to tell how much is puberty and how much from the vagus nerve damage. People seem surpised when they meet him and then hear his voice. Looks like a kid but sounds like a young man!
His blood pressure remains perfectly normal (slowly became normal over the days after he had the surgery to have the VNS removed) and he has not had a Cerebral Hypoxia attack since before the VNS was removed. No more pulse ox monitoring and no more oxygen tanks in our house!!!!
On a bad note he has continued to have major asthma problem since having the VNS removed and his reflux and GI problems are much worse since the surgery. We are prob going to have to have another g-tube replaced and have a fundo done in the near future. We've tried all the meds, elevating his head, etc but he continues to have major problems. We see our GI doctor the end of March so hopefully we'll find out then if there is nything else to do.
Scott also started having seizures again on Feb.3rd. I accidentally gave him 9 meals with sweetened pinapple and he had 14 drop seizures and 12 myonclonic seizures requiring Diastat. Since then we have adjusted the diet twice and swtiched from AcipHex (which i think is what caused the most recent bout of seizures) to Nexium. We just switched the reflux meds 2 weeks ago so too early to tell yet if this is what the problem was this time. He hasn't a seizure in two days but he's gone this long without any too this past month so am not banking the seizures are gone again just yet. We see our Ketogenic diet Neuro Weds and am wanting to have an EEG done to see what's going on while he's sleeping. He isn't seizing during the day but is having mild tonic clonic seizures and myoclonic jerks while he's asleep which concerns me. I have noticed the seizures aren't lasting but a few seconds each and they aren't hard seizures at all plus he is back to himself again so know he's better than he was even a week ago.
So as you can see a lot really has happened and praying we can get him totally seizure free again soon. He went exactly 2 years and 13 days without any seizures at all and his keto team seems to think we will get him there again so that we are trying to think positve and pray we still have the ketogenic miracle and that we just had a couple of mistakes to throw us off.
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« Reply #45 on: March 04, 2007, 01:19:36 PM »

WOW!  What an update!

I would like to thank you for sharing your child's experiance wit VNS.  It has been a very difficult time for all of you.  It is our hope that his current issues will resolve themselves.

He's been such a trooper thru all of this!


 
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« Reply #46 on: July 08, 2007, 02:00:23 PM »

Fay-

We finally saw a great Neuro that knows all about Sedona's other disorders and is not willing to cause more damage to her. He is not willing to medicate without talking to her Pulmonoligist or Genetic dr. This is a new one for us.

Sedona's lung issues are the same. Nothing new to tell there but she is having more seizures and her neuro put her on High dose Valium to control them. Except it is making her O2 levels drop and she is shaky in the AM.

She also started to have seizures that cause her to freeze or loose her balance.  We have never had these before. Kinda makes me nervous.

We are all moved to AZ and it is hotter here but the schools and medical are 100% better than Vegas.

Gina :usflag:  
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« Reply #47 on: July 08, 2007, 04:17:08 PM »

Thanks for the update.  I've wondered how she's been doing. Should have called you (same number?) but things haven't been so good here at all with Scott or my Mom so rarely get to talk on the phone at all and don't get to get on the computer much either. Have you read the updates on Scott yet? He still has major GI problems and will find out Thursday what our next step will be. Now that he's 18 years old we've been through the ringer and back about Social Security, Durable Power of Attorney and Gaurdianship but thankfully we've gotten a lawyer willing to help us with Gaurdianship now. My Mom, who has moderate Alzheimers, lives with us and she's gotten worse so have my hands full with her too. Then last week- July 3rd-Sarah, our 15 year old daughter, was in a bad car wreck. They were on the way to a 4th of July cookout at our church and then to watch fireworks afterwards at the church before coming home. A lady pulled out in front of them and the driver (youth pastors son) had no time to stop or slow down at all. Sarah saw the car pull out so tried to brace herself with her arms on the drivers headrest -which didn't help her at all. All 4 teens were rushed by ambulance to the hospital. The car is totalled. Sarah cracked her collarbone, has several pulled muscles in her neck, arms, shoulders and upper back plus has seatbelt burns across her neck and left shoulder. Thankfully she'll be ok and so will the other 3 teens that were in the car with her. It will just take time for them to heal.
Were you ever able to get Sedona home oxygen? I hope so.
Can you please email me your phone number if it's changed and your address. We should be getting Scott's graduation pics back soon and I'll send you one. hugs, Fay
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