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Amanda is doing fine. Here's some details (or as some like to call it "TMI*"):
5/21 surgery began at 8 a.m. she was out at 1:30 p.m (2.5 hrs early). The doctor fused a
level higher and lower than expected due to small vertebrae vs. screw size (you'll be
amazed when I send the pictures!--as soon as I scan them in). She is fused T4-L1. It was
a posterior fusion, 2 rods, and screws at every level. There was no spinal cord damage of
any kind. It was a 100% correction. Therefore, she went from a 50° right thoracic curve
(plus a small left curve in upper lumbar too) to a 0° curve. The first afternoon and
night were fitful and it was a battle between fever (103° at one point), oxygen
saturation (one lung was a little collapsed - atlectasis - she was only breathing to the
250 mark on the "inspirometer?" or whatever you call it). This continued with Mom alert
and by her side all night until...
5/22 when she started her PCA with dilaudid + basal level too at 7 a.m. please excuse my
spelling I am too tired to look it up. In addition, valium and vicodin (colace too). Then
her pain was controlled (BIG RELIEF) and then it was fever spikes, low saturations,
respiratory treatments, breathing exercises....(they gave her valium which helped A LOT
with pain and spasms, colace, and she was able to push the PCA in her sleep although she
only slept for 1/2-hour periods that day. Her goal was to get up one time and she did
that PLUS 7 sidesteps (she's the fusion poster child!) We got one smile out of her that
day in the PICU. Late evening we were moved to Peds floor. It was again about breathing
and pain, a little bit of fever and spikes in resp. rate when the pain got above a 6.5 on
the Panda Pain Scale. Tummy painful and distended. Oh, early morning x-ray this day
almost killed her (in her words).
5/23 - we continued breathing, resp therapy every 4 hours, sats getting better, catheter
out overnight, went pee (and walked there) 2x, cont'd colace, pain control with
PCA/dilaudid (vicodin/Lortab and valium too), she started to fret over the poop looming
in the future and still hasn't eaten. Tummy more painful and quite round. Can blow the
inspirometer thingie to 1250 now. Got hotel room at the encouragement of Dr. Van Meurs
(yes, you were right!!! thank you).
5/24 - Saturday, went pee on own all day, got up 7 times, overdid it some and felt VERY
PAINFUL that evening (bad timing cuz PCA was removed that a.m.) horrible night nurse
would not give the intermittent (between the valium, Lortab) dilaudid -- I was a wreck
and she was a wreck at one point resp. rate peaking at 135 bpm. She pooped overnight
(thank the Poop Gods!!) Can blow the inspirometer and hold it in the smile face zone for
a good period. I have some pointers for Mom's and obtaining pain control from now on.
Sleeps 1-2 hrs. at a time. I think we get three smiles out of her this day.
5/25 Sunday, pooped 2x (poop is a BIG DEAL), resp. good, off resp. treatments finally,
spoke with PA and got the Lortab every 3 hours instead of 4 and dilaudid all day as
needed she was apologetic about the anti-narc nurse. Plus colace and valium. PAIN RELIEF
AT LAST AGAIN....thank the pharmaceutical Gods!! Our lives have become about the small
things like: pillows, medication, poop, pee, cat naps for parents, ice chips, can she eat
half a gummy bear? and that kinda thing....she walked the unit's loop once.
5/26 - Memorial Day, x-ray in the a.m., preparing to go home. She is happy to see Paul
Michael who is visiting after a week of vacation. She ate oatmeal (finally) We got home
at 2 p.m. We've been up all night -- she sleeps about 2 hours at a time. She needs
constant position changes. She is already "bored"....yikes, poor me...my back, neck and
shoulders are pretty sore as she weighs 92 pounds...Oh, she had a dressing change and a
shower and now gets one every other day (lucky Mom, again) she hates the removing of the
invisible transderm tape or whatever it is. She walked the unit's loop 2x.
5/27--Oh, by they way she is 5 foot 2.5 inches now. She gained 1.5 inches from the
surgery....we see "eye-to-eye" now (you know that won't last!). Her back is GORGEOUS. It
is perfect and there is NO rib hump. Dr. Lincoln is a wonderful surgeon and so great with
the family (i.e., me). Except for the nurse from hell and our re-enactments from "Night
of the Living Dead" we are coping. She's on Meds now every 3 hours at home....I keep
setting the timer. Her friends left a big "welcome home" banner and a Fun Songs for
Amanda CD. She got flowers, balloons, visitors including her "brace mentor" Laura who had
a double-curve 60 degrees corrected by the same surgical team 5 years ago (that was
really nice for both of them). Someone is bringing us dinner all week and we have
staggered visitors for her in the afternoons. I am less anxious but really tired. Oh, I
had her laughing in the middle of the night when I cured her hiccups by blowing a bubble
gum bubble onto her nose (ya had to be there). Okay, tired but up hill from here.
Thank you all for your kind words of encouragement, tips, and prayers.
*TMI=Too Much Information
P.S. Prognosis is: no restrictions, she may lose 0.7 cm of growth overall when all growing is said and done.
5/21 surgery began at 8 a.m. she was out at 1:30 p.m (2.5 hrs early). The doctor fused a
level higher and lower than expected due to small vertebrae vs. screw size (you'll be
amazed when I send the pictures!--as soon as I scan them in). She is fused T4-L1. It was
a posterior fusion, 2 rods, and screws at every level. There was no spinal cord damage of
any kind. It was a 100% correction. Therefore, she went from a 50° right thoracic curve
(plus a small left curve in upper lumbar too) to a 0° curve. The first afternoon and
night were fitful and it was a battle between fever (103° at one point), oxygen
saturation (one lung was a little collapsed - atlectasis - she was only breathing to the
250 mark on the "inspirometer?" or whatever you call it). This continued with Mom alert
and by her side all night until...
5/22 when she started her PCA with dilaudid + basal level too at 7 a.m. please excuse my
spelling I am too tired to look it up. In addition, valium and vicodin (colace too). Then
her pain was controlled (BIG RELIEF) and then it was fever spikes, low saturations,
respiratory treatments, breathing exercises....(they gave her valium which helped A LOT
with pain and spasms, colace, and she was able to push the PCA in her sleep although she
only slept for 1/2-hour periods that day. Her goal was to get up one time and she did
that PLUS 7 sidesteps (she's the fusion poster child!) We got one smile out of her that
day in the PICU. Late evening we were moved to Peds floor. It was again about breathing
and pain, a little bit of fever and spikes in resp. rate when the pain got above a 6.5 on
the Panda Pain Scale. Tummy painful and distended. Oh, early morning x-ray this day
almost killed her (in her words).
5/23 - we continued breathing, resp therapy every 4 hours, sats getting better, catheter
out overnight, went pee (and walked there) 2x, cont'd colace, pain control with
PCA/dilaudid (vicodin/Lortab and valium too), she started to fret over the poop looming
in the future and still hasn't eaten. Tummy more painful and quite round. Can blow the
inspirometer thingie to 1250 now. Got hotel room at the encouragement of Dr. Van Meurs
(yes, you were right!!! thank you).
5/24 - Saturday, went pee on own all day, got up 7 times, overdid it some and felt VERY
PAINFUL that evening (bad timing cuz PCA was removed that a.m.) horrible night nurse
would not give the intermittent (between the valium, Lortab) dilaudid -- I was a wreck
and she was a wreck at one point resp. rate peaking at 135 bpm. She pooped overnight
(thank the Poop Gods!!) Can blow the inspirometer and hold it in the smile face zone for
a good period. I have some pointers for Mom's and obtaining pain control from now on.
Sleeps 1-2 hrs. at a time. I think we get three smiles out of her this day.
5/25 Sunday, pooped 2x (poop is a BIG DEAL), resp. good, off resp. treatments finally,
spoke with PA and got the Lortab every 3 hours instead of 4 and dilaudid all day as
needed she was apologetic about the anti-narc nurse. Plus colace and valium. PAIN RELIEF
AT LAST AGAIN....thank the pharmaceutical Gods!! Our lives have become about the small
things like: pillows, medication, poop, pee, cat naps for parents, ice chips, can she eat
half a gummy bear? and that kinda thing....she walked the unit's loop once.
5/26 - Memorial Day, x-ray in the a.m., preparing to go home. She is happy to see Paul
Michael who is visiting after a week of vacation. She ate oatmeal (finally) We got home
at 2 p.m. We've been up all night -- she sleeps about 2 hours at a time. She needs
constant position changes. She is already "bored"....yikes, poor me...my back, neck and
shoulders are pretty sore as she weighs 92 pounds...Oh, she had a dressing change and a
shower and now gets one every other day (lucky Mom, again) she hates the removing of the
invisible transderm tape or whatever it is. She walked the unit's loop 2x.
5/27--Oh, by they way she is 5 foot 2.5 inches now. She gained 1.5 inches from the
surgery....we see "eye-to-eye" now (you know that won't last!). Her back is GORGEOUS. It
is perfect and there is NO rib hump. Dr. Lincoln is a wonderful surgeon and so great with
the family (i.e., me). Except for the nurse from hell and our re-enactments from "Night
of the Living Dead" we are coping. She's on Meds now every 3 hours at home....I keep
setting the timer. Her friends left a big "welcome home" banner and a Fun Songs for
Amanda CD. She got flowers, balloons, visitors including her "brace mentor" Laura who had
a double-curve 60 degrees corrected by the same surgical team 5 years ago (that was
really nice for both of them). Someone is bringing us dinner all week and we have
staggered visitors for her in the afternoons. I am less anxious but really tired. Oh, I
had her laughing in the middle of the night when I cured her hiccups by blowing a bubble
gum bubble onto her nose (ya had to be there). Okay, tired but up hill from here.
Thank you all for your kind words of encouragement, tips, and prayers.
*TMI=Too Much Information
P.S. Prognosis is: no restrictions, she may lose 0.7 cm of growth overall when all growing is said and done.
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