Re: Berkeley UpDate

December 24, 1999

Michele,

We will definitely keep Berkeley in our thoughts and prayers!

Janet

Wife to Matt

Mom to & (CHaRGEr) 7 1/2,

nne 2 3/4

Mom to 19 months.

Weymouth, Massachusetts, USA

<A HREF= " http://members.aol.com/jpm4189/page/index.htm " >Our Family Homepage</

A>

December 25, 1999

Michele,

I had to come on to check on the families who are spending this Christmas in the

hospital and might need an ear. I am sorry to hear of Berkeley's spinal fluid

problems, I have no advice to offer since I am totally uneducated on this side

of things. I am thinking of you tonight and sending positive thoughts your way

for Berkeley's surgery to be a success. I have a question that will probably

sound dumb as I have no idea about the whole shunt/drainage issue, if she is

having trouble draining it internally, can they not do something externally

until she can handle it? Or would that leave her open to too much infection?

Take care and give Berkeley a hug from us

Lots of love,

Mom to Kennedy 22 mos old CHARGEr, 10, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716

ICQ #1426476

Berkeley UpDate

Hello all. I have been keeping up with my mail, but have not taken the time

to write lately. Berkeley has been in PICU for the last 8 weeks, and will be

having surgery again tonight. It's will be the 4th time during this stay.

Berkeley has a VP shunt for her Hydrocephalus. After several weeks with a

severe infection they were finally able to re-internalize the drain. Now,

because of all the scar tissue, her stomach is not able to re-absorb the

draining spinal fluid fast enough and her stomach has been terribly distended.

For some unexplainable reason, Berkeley produces more spinal fluid than a person

her size ought to be able to, and the stomach just can't keep up. They are

going to re-direct the drain into her gall bladder. The nuero surgeons told me

to pray that this works, because they don't know what they'll be able to do if

it doesn't.

Please be thinking of us this evening.

Michele, mom to Berkeley (7 mo) & (4)

---------------------------

December 25, 1999

We will be thinking of both Brittany and your family I hope the surgery

is successful, and that you can all still have a happy holiday season.

Jelena Salt Lake City UT

Wife to Liam, Mom to Matt 16, Logan 7 (bilateral cleft lip and palate,

partial ACC and SOD: ONH, partial panhypopit, SI disorder and hearing

impaired?), Connor 3 and Duncan 17 months

December 27, 1999

-

I am happy to report that Berkeley came through the surgery without any

unexpected complications. So far things are going well. It will take a few

more days to know if the shunt drain is working well, but the initial labs are

good. You have a perfectly sensible questions about draining the shunt

externally. When the shunt was placed, a hole was drilled through her skull

and a tube was placed in the large ventricle of her brain. When she got an

infection in it they opened it up and drained it externally for several weeks.

Infection is a big issue while it's open so it's typically closed within 10

days. Berkeley's was open much longer because the infection was extremely

difficult to clear up. It had only been closed for 5 or 6 days when the

absorption problem reached the critical point and her nuero-surgeon was felt

that opening it up to drain externally again would just be prolonging the

inevitable. I was against doing it for other reasons as well. While she was on

the external drain her head had to be at an exact height (they checked it every

hour with a level) to drain at the proper rate. I haven't been able to hold her

in over 6 weeks! She has been on TPN for the last 10 days and pretty much looks

like skin and bones. If they start feeding her in the next few days, I should

be able to hold her by this weekend. I'll be keeping my fingers crossed.

Hope this was easy to understand. Thanks for asking.

Michele