Baby back in the hospital!

[Bad JuJu]

That poor kid--and poor family, too.
Hugs and positive thoughts coming your (and their) way.

[Brandi]

The baby had two operations today. Very involved and both for samples. They are now saying they think it is not what they thought! Huge fricken sigh of frustration now! My sister sent me a pic (she asked first) and I almost freaked out from saddness. She has almost no hair now! And has hug incisions on 2 differnt places on her head. One from a couple weeks ago and one on top of her head from today. Today they took a piece of her skull and bone marrow tissue sample. It is just awful.
While riding today I almost broke down But some how sucked it up. I think to much when I ride sometimes. So I stopped thinking. Almost don't remember the ride.
We are all back to being mad. We had an answer and now they are 99% sure it is not what we thought. (shaking my head).
I had to let my sister just vent. And she vented about everything!
Her temp has been gone for a full day now. SO 1 good thing. But almost back to square one.

[kelownagirl]

((((brandi)))))

[blueskies]

Oh, Brandi,

What a roller coaster of emotions you all must be experiencing...

It's got to be very frustrating to get changing answers on the diagnosis, but try to remember that it's a very good thing that they did these further tests to confirm before starting any treatment. Her best outcome will come from an accurate diagnosis, so she gets just the right treatment. That place of not knowing is very difficult to sit through, I know.

Hang on to the HOPE. I have 2 friends whose babies had congenital problems that required cranial (skull) and brain surgery as infants, and another friend whose daughter had a cancerous brain tumor as a toddler. All 3 of those children are happy, healthy teen-agers now who don't remember their early medical traumas at all. Their moms won't ever forget, though.

It's a very helpless feeling to see a child going through these things. My heart goes out to all of you.

(((More hugs)))

[bmccasland]

(((((((((Brandi & Lorelei))))))))))))

Unfortunately wee ones can't point to something and say it hurts here, or describe very well what's going on, how long it's been going on, or if things have changed. That's what makes pediatric medicine so difficult - according to my cousin the FP Doc.

Do you feel like your neice's life is a episode of "House" and you want it wrapped up at the end of the hour?

[Brandi]

(((((((((Brandi & Lorelei))))))))))))

Unfortunately wee ones can't point to something and say it hurts here, or describe very well what's going on, how long it's been going on, or if things have changed. That's what makes pediatric medicine so difficult - according to my cousin the FP Doc.

Do you feel like your neice's life is a episode of "House" and you want it wrapped up at the end of the hour?

yes! We need to find a House Dr. And believe it or not. We just found out there was an episode just this past christmas Called Merry Little Christmas that was about a littel girl who was hard to figure out and she had what we thought my niece had! But sadly now it is not we think. The final test has not come back yet. But they are pretty sure about it.
The baby is doing good this morning. She is eating and being a butt! All good signs at this point.

[RoadRaven]

Well... still holding you all in my thoughts...
Great news that she is feeling bouncy after the ops and is eating
Children are remarkably resilient
AwhiAwhi to you all

[Brandi]

Ok they are heading home!
Thank goodness, ,my sister called me today crying her eye's out. She was just so frustrated with everything. By the time we got off the phone I had brought her back down to earth. She got set off becuase the baby didn't want to eat good food. She wanted junk food. Well kinda chocolate milk and strawberries. But the Dr was saying how she needs to eat more protien cause of how skinny she is etc....
Well my sister was struggling trying to get her to eat eggs and other things. The baby would hold the same bite of food in her mouth for like an hour at a time. The baby eats anything and everything. Except for today. And my sister was taking it to to heart. So I told her to have the baby spit out the food. Give her her peanut butter crackers, turn the tv back on and breath. Took a bit to get her to that but once she did my sister felt better. And then the baby went to sleep. probably tired from holding the food in her mouth. Anyway they are going home. With again no answers but I guess they are going to put the baby on steroids (yuck) and monitor her. Do another ultra sound in a few weeks etc....Boy what a ride this has been!
Going to a birthday party tonight I am going to just have a good time!
Thank you everyone for just listening. I would like to stop writing in this post!

[bmccasland]

Brandi,

Enjoy the birthday party - taking care of you is important too.

Way back when, my little sister had a severe bout with Valley Fever (a wind borne fungus common in the central valley of California and Arizona for those of you who haven't heard of it. You can have cold/flu like symptoms or become severely ill, or die. Most people who've lived in AZ or CA for at least 10 years have probably had it. End of brief)

Anyway, when Aly was sick - and she was very very sick - her doctor had us make whole milk, full cream-ice cream milk shakes. We'd add a banana, honey, and a raw whole egg (when she wasn't looking) to the blend. Instead of an egg, maybe add protein powder. Milk shakes appealed to Sis, and the doc said add the calories. She was also on prescription vitamins, and being treated for malnutrition - not from our lack of care, but because of the illness. That's when I found out that malnourished children hallucinate. I never saw a child be as skinny as she was, with a pudgy belly. - Advance to the future - she's now the mother of 3 kids (15, 5, and 4 mo).

So maybe a milk shake would appeal to your neice - then add nutritious goodies to the blender.

Just a thought.

[Geonz]

All I can send is positive thoughts... here they come...