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Friday through Wednesday, March 23rd through the 28th

Submitted by Tim Schmanski on Wed, 2007-03-28 10:54.

Hello again,

It is certainly time for another update and I'm happy to report that Tori had a pretty good weekend as she was far less agitated than she has been lately and it was a welcomed change. She spent much of her time in her wheelchair hanging out in the family room area. We also took her out on the deck and did a Sunday drive around Orem which she seemed to enjoy as well.

Tori is sleeping exceptionally well and her routine is very stable at the moment. Our goal each night is to give her all of her medications at 10:00pm and to refill her food pump for the night. Tori is still drip feed 110ml per of liquid Jevity 1.2 through her G-Tube. After her medications it usually takes an additional hour before she begins to sleep. We haven't had to give her any Ambien to help her sleep for several weeks now. Tori will then call for us two to three times a night so she can be changed and typically goes immediately back to sleep. Tori then wakes up anytime between 8:30am to 9:30am.

Tori's high muscle tone is still very present but tomorrow is thankfully botox day!!! :-) If you want to somewhat experience what Tori constantly feels flex the muscles in your arms, shoulders, back and neck in an 'Incredible Hulk' type pose for a minute or two. Then imagine doing it non stop for about 14 hours straight which is about how long Tori is awake each day. Not pleasant I guarantee you.... With the botox and phenol injections strategically placed in those major muscle groups Tori's tone will be reduced and her comfort level will be greatly improved.

Tori's PT and ST sessions were cancelled Tuesday because she decided to do some projectile vomiting in the afternoon when they were scheduled... So the therapies will continue during the rest of this week.

Thank you for your support!!

-Tim

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Try the G-J tube!

Submitted by jpesicka1 on Thu, 2007-03-29 02:20.

Justine goes on monday to get botox too! She will only get injections in her wrist flexors this time. Sorry to hear about the vomiting still. You might ask your GI doc about the G-J tube that justine has. The last thing you guys want now is for her to aspirate. Aspiration pneumonia is bad. The tube passes through the stomach straight into the Jejunum. There is no chance of vomiting or aspirating. You will have to stay with the drip feeds but with the vomiting disrupting therapies it would be so worth it. Justine has a little backpack with a portable pump made by Zevex corp. called the enteralite. It is really small and can pretty much run upside down. It runs almost around the clock. When we are done with the formula, I run water so she stays well hydrated. Most of the time it is just hanging from her chair so you just get used to it. During therapy or whatever we just shut it off. jodi - justine's mom

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Re: Try the G-J Tube

Submitted by Tim Schmanski on Thu, 2007-03-29 19:32.

Hi Jodi,

Tori had her botox and phenol injections today and we can tell she already feels much better!! Tori also had a GJ-Tube since her injury but she pulled it out a couple of weeks ago. We had it placed immediately and used the J port to help her gain her weight back. She lost 25 to 30 lbs after her injury and we struggled for months upon months to get her weight back up and to battle the SMA Syndrome she acquired... Once she recovered we switched her feedings to the G port because we want her stomach working so we can mouth feed her. She has been feed strictly through the G port for some time now. The J port was available but not used. I installed a G-Tube only when she pulled out the GJ-Tube and will continue to use it. Tori's vomiting usually occurs when she is agitated only and is normally small amounts so we'll try and manage it by not letting her get agitated :-) We drip feed Tori all through the night and through most of the day as well. We stop the feeding when she is in her wheelchair.

Thanks again for your input and feedback!!

-Tim

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Re g-j tube

Submitted by jpesicka1 on Fri, 2007-03-30 20:22.

I know your struggle with the weight. Justine was only 20 lbs. when she drowned in 1990. In 2004 she was only up to 50 lbs. When we had the baclofen pump placed she lost 10 lbs. in the 4 months that she had it. Since she had her trach placed in april 2005 she has now gained 38 lbs. They actually lowered her calories. She does eat by mouth full meals. It just makes it easier to work around therapy schedules using the j tube for the majority of her liquids which has prevented her missing therapy sessions and she has not thrown up since. jodi - justine's mom

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vomiting

Submitted by jenniferthaxton on Mon, 2007-04-02 13:45.

Hello again,this is aarons sister.Ive been a member for awhile and ive been reading about the problem with tori vomiting.Before aaron was discharged from the hospital they did a surgery called Fundoplycation.This procedure consists of stitching the top of the stomach. This has helped aaron from reaccurant pneumonias.He never lost any weight he has steadily gained since his accident he went from 52 lbs. to 72 lbs since august last year. Im very afraid of aaron throwing up and ingesting some in his trach but thankfully the fundo has worked because he recently had rotovirus and never threw up. When I read about the abount of tube feedings tori and justine get I was wondering how much they get an hour. Aaron gets 95 cc per hr for 12 hours at night the formula is called nutren jr and the total calories are 1140. Then thru the day he gets 3 six ounce pedialyte boluses.Ive always felt thats a bit much but from the sound of things he gets less than your girls.Good luck with the vomiting hope it gets better .Jennifer Thaxton-aarons sister

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fundo and formula

Submitted by jpesicka1 on Wed, 2007-04-04 01:37.

Hello Jennifer, I just wanted to let you know that justine had the fundo in 9/'02. but with her hypertonicity it slipped shortly after. The surgery to repair it is much more difficult so we just will keep with the GJ tube as long as it is working. She can not have any lactose. So there goes all the high calorie, high fat cheeses, puddings etc.. Her formula is peptamin. She gets 75cc per hour of formula for 24 hours. Which is a total of 1760 calories plus she has 3 meals of pureed food a day. She can not do bolus feeds. So my guess is she gets about 2500 cal. a day. jodi - justine's mom

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