There's a dance I know called the "Two Steps Forward, Three Steps Back". The last time I danced that one in particular was when Grace was in the NICU. I forgot how frustrating and utterly exhausting it could be. The silver lining is, we're moving. Sometimes forward, sometimes back, but there's movement, and sometimes that's all you need.
This morning started with hope that we'd be going home today. We were both looking forward to climbing (or being moved to...) our own beds. Yet, here I am, ready to go to sleep in 3C South at DuPont. It's okay...we need to be here tonight, and maybe a few more nights.
Grace asked for Rice Krispies this morning, and ate about half a bowl. Then she had some mandarin orange slices. (One step forward.) Then I wore both breakfast items as they came right back up. (One step back.) Thank you DuPont for having a laundry room right across the hall. She didn't eat much else and relapsed into the issue of diminished articulation and total lethargy. (One step back.) Another blood draw was taken to measure her hemaglobin and hematocrit. The numbers are climbing slowly, but climbing nonetheless. (One step forward.) She slept pretty much all day, waking up at around 3PM.
She did move her bowels twice today which she needed to do before she was released. (Forward...) However, she could not empty her bladder. When she was awake, she was drinking quite a bit, and we knew that there was a possibility of bladder issues after the surgery. We'd thought they were a non issue at this point, but we were mistaken. They gave her 2mg of valium (her first since 2AM Tuesday) to relax everything in the hopes that she'd go. After 15 minutes, a call was placed to ortho, who requested an ultrasound. The nurse came in with the portable u/s, and Grace said "STOP!! I peed!!!!" (Huge step forward...physically and cognitively!) Stinker.
She had about an hour and a half this evening of lucidity that she hasn't had since Friday morning before the procedure. Tons of questions, comments, criticisms and chatter. She requested pancakes and sausage for breakfast. I requested a vinyl sheet for me. ;) She is also very upset that her roommate's mommy won't be here to lay with her. There's a precious 2 year old with pneumonia on the other side of room, and Grace just doesn't like that she's alone. She sent me over to check on her twice. Love my girl. (One giant leap forward.)
The bottom line as far as meds and the correlation between the lethargy and articulation issue: It's not a baclofen issue, because if it was it would remain constant. It could be the cumulative effect from the valium as first thought, and her dosage has been decreased again to 2mg vs 3mg. She still has to take the valium to eliminate muscle spasms. The team does not want to switch her from Tylenol with Codeine to Lortab, because it's a stronger drug. So, the Tylenol 3 dosage was reduced. The good news is that she is not complaining of pain in her hips or legs, nor the pump site, and very rarely has since leaving OR recovery. The only constant she's had as far as pain is a headache. Her blood pressure remains fantastic, and her heart rate has lowered to well within normal limits.
When she's been able to formulate her thoughts and articulate them today, she's been pretty dang funny. "Nurse, I don't LIKE you now LEAVE me alone!"
"I don't like any of my nurses. But I like my PT because she says when I can go home."
"Mama, I'm not taking that medicine and that's final."
Somewhere in there is my child, fighting as hard as she can to get out. I can see the frustration in her, but can also see the determination. She'll get there, forward or back, one step at a time.
xoxo,
K & G
This morning started with hope that we'd be going home today. We were both looking forward to climbing (or being moved to...) our own beds. Yet, here I am, ready to go to sleep in 3C South at DuPont. It's okay...we need to be here tonight, and maybe a few more nights.
Grace asked for Rice Krispies this morning, and ate about half a bowl. Then she had some mandarin orange slices. (One step forward.) Then I wore both breakfast items as they came right back up. (One step back.) Thank you DuPont for having a laundry room right across the hall. She didn't eat much else and relapsed into the issue of diminished articulation and total lethargy. (One step back.) Another blood draw was taken to measure her hemaglobin and hematocrit. The numbers are climbing slowly, but climbing nonetheless. (One step forward.) She slept pretty much all day, waking up at around 3PM.
She did move her bowels twice today which she needed to do before she was released. (Forward...) However, she could not empty her bladder. When she was awake, she was drinking quite a bit, and we knew that there was a possibility of bladder issues after the surgery. We'd thought they were a non issue at this point, but we were mistaken. They gave her 2mg of valium (her first since 2AM Tuesday) to relax everything in the hopes that she'd go. After 15 minutes, a call was placed to ortho, who requested an ultrasound. The nurse came in with the portable u/s, and Grace said "STOP!! I peed!!!!" (Huge step forward...physically and cognitively!) Stinker.
She had about an hour and a half this evening of lucidity that she hasn't had since Friday morning before the procedure. Tons of questions, comments, criticisms and chatter. She requested pancakes and sausage for breakfast. I requested a vinyl sheet for me. ;) She is also very upset that her roommate's mommy won't be here to lay with her. There's a precious 2 year old with pneumonia on the other side of room, and Grace just doesn't like that she's alone. She sent me over to check on her twice. Love my girl. (One giant leap forward.)
The bottom line as far as meds and the correlation between the lethargy and articulation issue: It's not a baclofen issue, because if it was it would remain constant. It could be the cumulative effect from the valium as first thought, and her dosage has been decreased again to 2mg vs 3mg. She still has to take the valium to eliminate muscle spasms. The team does not want to switch her from Tylenol with Codeine to Lortab, because it's a stronger drug. So, the Tylenol 3 dosage was reduced. The good news is that she is not complaining of pain in her hips or legs, nor the pump site, and very rarely has since leaving OR recovery. The only constant she's had as far as pain is a headache. Her blood pressure remains fantastic, and her heart rate has lowered to well within normal limits.
When she's been able to formulate her thoughts and articulate them today, she's been pretty dang funny. "Nurse, I don't LIKE you now LEAVE me alone!"
"I don't like any of my nurses. But I like my PT because she says when I can go home."
"Mama, I'm not taking that medicine and that's final."
Somewhere in there is my child, fighting as hard as she can to get out. I can see the frustration in her, but can also see the determination. She'll get there, forward or back, one step at a time.
xoxo,
K & G
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