Surgery is scheduled for
Monday at 7:30am. Sunday at 9am is her pre-op appt, as long as she checks out
healthy on Sunday, we'll go back on Monday! I sure hope she stays healthy, its
been a loooooong week of keeping her inside!
Sunday July 22 Pre-op
went well.. Check in at 6am :/
Monday July 23
-A little versed and the
talking tom app on the docs phone and she went like a champ! Brave girl!!
-First update was just
that lines are in and she is asleep and they are just getting started. Another
update in a hour to hour and a half.
-On bypass now.. Lots of
scar tissue so it took a bit to get going..
-Off bypass! Closing her
up, dr birch (surgeon) will be in to talk to us at about 2:30. Hope to see her
about 3:30..
-She's done! Going to see
her in icu in about 15-20 minutes :/
-The np says Libbi is 6
hours ahead of the curve ;) are we even surprised?!! She's getting ready for a
Popsicle but REALLY wants a 'Sippy of milk' she's said it 400 times. Brave
girlie!!
Tuesday July 24
-Great night!! Nights
always scare me :/ she had a few sippys of MILK!!! She does NOT like the canula
(oxygen nose thingy) but doing well! Hoping for big things to happen on this
great holiday!!
-The drs just came and
it's was good. She is getting rid of a few wires including her pee bag, meaning
she an sit up, walk to potty etc. Shes having some pacing issues, but the nurse
says she feels confident that will get better soon. So basically she's on a
pacemaker for now.. Doing good tho!!
-Ok so.. team stopped by
again tonight and turned off the pacer, her blood pressure drops by about 30..
So she's still on it. BUT they did say it could get better any day!! So pray
for swelling to go down and rhythms to get in sync!! That's the only thing
keeping us in icu.
Wednesday July 25
Libbi
at 4:30 am
I wanna go home..
Me: we will honey.
L: are we never gonna go home?
Me: we are, pretty soon
L: no we aren't
M: (sobbing) yes we are as soon as you get
better
L: but the drs fixed my broken heart
Her little sweet voice is the saddest part. No
crying, no screaming, just very matter of fact brave talking.
Bravest little girl I know for sure.
She slept well, and so did I. It's going to be a good day, I feel it :)
-Post from mindi: Team
just left again, she looks really good other than the pacing issue.. Another
day in cicu. But we're ok with it. The nurses here are wonderful and I like the
one on one care. Her bp didn't drop as bad as last night so it's getting better
:) she walked all the way to the potty this morning!! She is so tough!!
-Another post from mama!
11am mid chest tube
out!!!! Woot woot!!!! Also got a visit from dr menon. He was very nice as
usual. No more news for now :)
-Wifi is acting up, skylee
is posting updates for me but you may have to go the our wall to see them :)
mid chest tube came out!! For sure 1 more day in cicu, dr me on stopped by,
lots of toys and playing going on...and.. That's all for now :)
-Still on pacer for now.. Shes
been up coloring and playing play dough! Hard for me to leave her, she doesn't
like it :( I finally left her and came to sit outside with my 2 favorite things
.. Diet coke and Jana :)
-Yay!!!! Pacer is off and
bp o2 and hr all look good!! They'll watch her in cicu over night but if she
does well we may move to the floor tomorrow!! We are now recovering from the
2nd time of missing meds and trying to catch her up!! Guess I can never leave
or sleep or they forget. Irritating. But nonetheless :) :) :) we are happy
campers!!
-4 hours without pacer she
puked 4 times.. She hasn't puked the whole time until after they turned it off
sooo.. It's back on for now :(
Thursday July 26
-The pack just left, not
much change for today. They unhooked the pacer and she turned gray. I asked if
they could wean her instead of instantly taking her off. Not really... So it's
just still on. Still in cicu for today.
-I should add some upbeat
and positive. She is the bravest toughest girl ever! She doesn't cry or whine,
she takes her meds so good and she is just content resting up :) also, she has
way cute 'day of the week' socks.. Makes morning time fun to get a new pair of
socks each day!! She likes to cross her feet and legs while watching a shoe.
Too cute.
-...and..I'm back. Dr B
came in (surgeon) and explained a lot about a lot. Bottom line, if she is still
needing to be paced by Monday-ish he would put the pacemaker in, which is
another surgery. So PRAY for Libbers that her heart starts functioning how it
should! We don't want another surgery and/or a pacemaker! Love Dr B, he is very
concerned and even said he is responsible cause it was fine before he went in
there :( poor guy. I don't know how they do what they do :(
-They removed her atrial
line and pulled IV accidentally :/ new IV is now in place, I'm getting to the
breaking point, I don't like her to get poked when not necessary!! Weaning
morphine today and giving other meds 'as needed' and it's just not cutting it.
I have to stay in their hip pocket to get meds for her! Good news, she ate a
piece of pizza!! First thing she's eaten since Monday!!
-I came home for a good
rest tonight, and can't sleep!! Serious anxiety leaving her. Grammy stayed with
her so shes good :) Not much new happened today, she walked a bit, slept a lot,
still being paced and hmm.. Not much more! Sorry not a very eventful update
but. I'll take uneventful.
Friday July 27
-Aaaaaaaahh such a good
report this morning!!!! Her rhythm is back!! They said it could slip back into
junctional rhythm but for now it's good!! She's been off pacer for about 10
minutes and feeling good!!! Yay!!! They mentioned floor in the am!!!!!
-Friday evening update..
Not much has changed, her rhythm stayed pretty good all day so still no pacer!
Still in cicu, they wanted to watch her close for 24 hours but If all goes well
during the night we could be moving on up tomorrow! (fingers crossed knock on
wood..) she's been eating pretty good.. Had a play date with Annie and did lots
of fun activities! I'm exhausted!
Saturday July 28
-As of 11:30pm the pacer
is back on :( her heart rate got as low as 68 while sleeping and her rhythm
slipped back to the naughty rhythm.. Please pray that her heart figures this
out soon so we don't have to go through another surgery! I don't think either
one of us can do it again.
-This is no place for a 3 year
old! Her sad face every morning that says "why am I still here? Get me out
of here!" Is KILLING me!! Hoping for a miracle this morning so we can get
moving closer to home.
-"what is that it's
annoying" referring to one of her monitors beeping.. Lol!
-Another day in cicu :(
they are taking out chest tubes hooray! But wont let her out of here with
rhythm issues. -They are placing a holter monitor today for 24 hours then will
make a decision on Monday about pacemaker.
-Libbi
is sleeping for now. They removed chest tubes (yay!) this morning! Pacer has
been off all day, She has holter monitor on for 24 hrs to tell us when exactly
she slips out of rhythm. They'll make a decision on the pacemaker after seeing
the results of that, I'm guessing not til monday morning.. For now we rest and
play! Not much else happening this weekend I don't think.. I sure wish she'd
watch the Olympics
instead of max and ruby :/ -Koy and Jerzi visited again today, as well as her
friend Jade!! That really lifts her spirits, but then she poops out. -Nothing
worse than watching a 3 yr old be depressed and beg to go home :( I miss my
kids and home like crazy but I'm trying to be 'Libbi strong' for her and stick
by her side. She needs me.. Thats all for now. Thanks for all the love, prayers
and support. I know that's what getting us through!
Sunday July 29
-I came home for a good
nights rest and to snuggle with my other kids... This is Kurt's report .. No
pacer all night :):)
She wants her mom.
-Another day of cicu to watch
her... Pretty sure she's tired of being watched!! Let us go!! We won't get
results of holter monitor til morning. Just a rest easy play day i hope :)
Mama bears getting angry!
They said we could take her to church, tell her she's going, then get told nope
sorry a nurse has to go with you and they don't have time!!! I fought for
moving upstairs, One nurse says ya one says nope. Bug bug. O and there's nobody
here today to read the holter results is why we are stuck here one more day!
Can't they can't someone in? Isn't that what drs do?!!! Grr!!!
-Woot woot we are out and
settled in our...drumroll... ROOM!!! Out of cicu!! Yay!!
-Ok now that I have a
minute here is a more detailed update.. They will evaluate the holter monitor
in the morning and decide if they need to place a pacemaker or not. If they
don't, home is close.. If they do, it's another 3-5 days I would guess.. She is
soooo bored and sad. I can't handle it! Thanks to all the cheer today! Lots of
fun people and fun gifts. She (and me) are spoiled!! :)
Monday July 30
-Waiting on holter results
still.. They are doing an echo soon as well. Should have more answers in a
couple hours..
-Still waiting... On both.
Yup. No hurrying up here. If they had to entertain a mad 3 year old maybe
they'd hurry!!!!!
-No pacemaker for now!!!!!
Home in the am (jinx) and replace holter in 2 weeks to see rhythms.. PRAY for
good things the next 2 weeks! It will be good I know it :)
-Ok libism...."I
don't like being sick and I don't like taking medicines but I want to play with
Annie's so I will" :(
Tuesday July 31
-An hour after getting
home, drew man woke up with a fever, I took him in and he has strep! Fabulous!!
I guess I need to get rid of him again. Is there anyone out there who is immune
to strep that would want him? Ha ha just kidding. Even with this crazy day I am
so happy! There's no place like home :-) oh yeah I forgot to mention that I
also had an oxygen tank dropped on my foot. Ouch! I guess that gives me another
week off of from gym!! Life is good.
August 3
-While watching the
olympic gymnastics last night Libbi says "oooo they are so beautiful! I
gonna take my medicine so I can be like them when I get bigger" :)
August 8
-Post op appt today!!
Hoping for good news and less meds!
-Hmm not sure where my
earlier update went but if you missed it here it is again.. Appt went well!
Chest X-ray looked great! EKG showed some funny rhythm so sept 11 they'll do
holter monitor again but I'm praying and thinking its just taking time to heal
and it'll be fine in a month. She's still on oxygen, hoping to kick that in a
month! For now, 4 weeks of normal!! :)
