Re: Update on Sasha (12:50 Easter Morning)

[Guest guest]

Stef - is she only on the oral antibiotics? Have they started any type of IV

antibiotics yet? Levaquin? It is a very good urinary antibiotic.

I hope that she's not in much pain and that they are able to get on top of it

soon. Before my kidney surgery last year I was in 3 times over 18 months for

urinary sepsis. Not fun at all. Only one infection since and thankfully

handled by oral antibiotics. I hope that things improve soon.

Ursula - mom to (14) and Macey (11, CVID)

http://www.primaryimmune.org

http://www.jmfworld.org

http://caringbridge.org/ga/macey/

[Guest guest]

Stef - is she only on the oral antibiotics? Have they started any type of IV

antibiotics yet? Levaquin? It is a very good urinary antibiotic.

I hope that she's not in much pain and that they are able to get on top of it

soon. Before my kidney surgery last year I was in 3 times over 18 months for

urinary sepsis. Not fun at all. Only one infection since and thankfully

handled by oral antibiotics. I hope that things improve soon.

Ursula - mom to (14) and Macey (11, CVID)

http://www.primaryimmune.org

http://www.jmfworld.org

http://caringbridge.org/ga/macey/

[Guest guest]

Thanks Ursula

She's on Bactrim IV 2x a day at this point. I don't know how she is

this a.m. - the last temp they took was normal - but also during the

time she had the motrin in her system. Hopefully the sensitivity will

show what's best for the infection.

Thanks again for posting

Stef

>

> Stef - is she only on the oral antibiotics? Have they started any

type of IV antibiotics yet? Levaquin? It is a very good urinary

antibiotic.

>

> I hope that she's not in much pain and that they are able to get on

top of it soon. Before my kidney surgery last year I was in 3 times

over 18 months for urinary sepsis. Not fun at all. Only one

infection since and thankfully handled by oral antibiotics. I hope

that things improve soon.

>

> Ursula - mom to (14) and Macey (11, CVID)

> http://www.primaryimmune.org

> http://www.jmfworld.org

> http://caringbridge.org/ga/macey/

>

>

>

[Guest guest]

Sending good thoughts and prayers your way, for Shasha's healing and

rest and peace for you. -- Sue

" Education is not the filling of a pail, but the lighting of a fire. " --

Yeats

picasso.moon wrote:

>

> Hi all,

> I am going to be brief - first I wanted to thank you for your kind

> thoughts and prayers. We've definitely needed it. Hopefully this

> makes sense....keep in mind I am working off of about 2 hours sleep!

> Thank you Towma for keeping everyone posted.

>

> Sasha is not doing so well. I am home right now - about to go to bed

> because I am so exhausted (we didn't sleep last night because they

> were in the room waking her every 2-3 hours to check her temp).

>

> She has fluid on her GOOD kidney (not the kidney she had issues with)

> and she's definitely got a Kidney infection.

> She's not responding to the Bactrim and she's been on it a full 24

> hours (actually more like 30ish). They did a sensitivity culture on

> it to see what antibiotics will work best for it - but we won't know

> that til tomorrow and the Bactrim is the best for coverage until

> then. The blood cultures are due back tomorrow too.

>

> When I left tonight she was due for Motrin but not yet due for her

> tylenol and she had 104.1.

> Her vein just blew in her IV and we had to RE stick her - sigh...

> and the poor kid was just shaking all over.

> It was horrible.

> We can't go home until the fever is broken and she eats and drinks.

> She had a little food today but no liquid ( I think in total maybe 4

> ounces).

>

> She was so bad Friday morning (she was purple all over her body) that

> when we got to the doctors - they were all over her - and all I could

> think of was that I might lose my baby girl....it was terrifiying. ....

> I'm really having a hard time with the reality of all of this....it's

> really hitting home this week...especially these past 2 days.

> Please just say a prayer for her that it's NOT in her blood stream

> (which would explain the massive fevers still despite the Bactrim)

> and that she starts to fight this.

> It looks like Easter is postponed... .I can't bring Will on to that

> floor - so our family will be split in two tomorrow - sigh....

> But it's just another day - we can celebrate the meaning of Easter

> any day of the week - heck we could celebrate it the whole

> year...it's a state of mind - and what matters most is my family -

> not tradition at this point....but it does sorta stink tho....

> I'll update when I can....tomorrow is going to be a LONG day.

> I'm off to bed - hopefully I can sleep - I'm SO tired.

> Thanks for every single good thought and prayer...it means so much to

> us.

> Stef

>

>

[Guest guest]

Praying for Sasha!

Peace be with you,

Pattie

The Will of God will never take you where the Grace of God won't be with

you.

[Guest guest]

I will pray for your Sasha. I know how hard it is to spend Holidays in the

hospital but you are right you can celebrate any day. God bless you.

(mom to Hope, 6, undiagnosed immune deficiency)

" picasso.moon " <picasso.moon@...> wrote: Hi all,

I am going to be brief - first I wanted to thank you for your kind

thoughts and prayers. We've definitely needed it. Hopefully this

makes sense....keep in mind I am working off of about 2 hours sleep!

Thank you Towma for keeping everyone posted.

Sasha is not doing so well. I am home right now - about to go to bed

because I am so exhausted (we didn't sleep last night because they

were in the room waking her every 2-3 hours to check her temp).

She has fluid on her GOOD kidney (not the kidney she had issues with)

and she's definitely got a Kidney infection.

She's not responding to the Bactrim and she's been on it a full 24

hours (actually more like 30ish). They did a sensitivity culture on

it to see what antibiotics will work best for it - but we won't know

that til tomorrow and the Bactrim is the best for coverage until

then. The blood cultures are due back tomorrow too.

When I left tonight she was due for Motrin but not yet due for her

tylenol and she had 104.1.

Her vein just blew in her IV and we had to RE stick her - sigh...

and the poor kid was just shaking all over.

It was horrible.

We can't go home until the fever is broken and she eats and drinks.

She had a little food today but no liquid ( I think in total maybe 4

ounces).

She was so bad Friday morning (she was purple all over her body) that

when we got to the doctors - they were all over her - and all I could

think of was that I might lose my baby girl....it was terrifiying.....

I'm really having a hard time with the reality of all of this....it's

really hitting home this week...especially these past 2 days.

Please just say a prayer for her that it's NOT in her blood stream

(which would explain the massive fevers still despite the Bactrim)

and that she starts to fight this.

It looks like Easter is postponed....I can't bring Will on to that

floor - so our family will be split in two tomorrow - sigh....

But it's just another day - we can celebrate the meaning of Easter

any day of the week - heck we could celebrate it the whole

year...it's a state of mind - and what matters most is my family -

not tradition at this point....but it does sorta stink tho....

I'll update when I can....tomorrow is going to be a LONG day.

I'm off to bed - hopefully I can sleep - I'm SO tired.

Thanks for every single good thought and prayer...it means so much to

us.

Stef

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[Guest guest]

Stef-

How is Sasha doing tonight??

I have been out of town and just getting caught up on everything-

so sorry that you guys are going throught this-it is scarey-you and your

family and especially Sasha are in our prayers-

please keep us posted if possible

Sue Petrelli

Mom to 15yr old CVID

" picasso.moon " <picasso.moon@...> wrote:

>

>>

>

[Guest guest]

We are blessed with Christ's resurrection to give us hope EVERY day...

not just this holy day of Easter! I know that it doesn't ease the

pain that separation can cause plus the fear and disruption.

Please know that we are all praying for your family.

Easter blessings,