Tuesday, January 17, 2012

An Extra Measure of Grace for Bob Marshall

"The number of children who were born subsequent first abortions with handicaps has increased dramatically. Why? Because when you abort the first born of any, nature takes it's vengeance on the subsequent children. In the old Testament, the first born of every being, animal or man, was dedicated to the Lord. There's a special punishment, Christians would suggest, and with the knowledge that they have from faith has been verified by the study of the Virginia Commonwealth University. First Abortions of first pregnancies are much more damaging to a woman than latter pregnancies..." - Prince William County, VA Delegate Bob Marshall (who has denied saying children with disabilities are a "punishment")
Sigh.  I could just let his comments stand on their own.  Of course, he's denying that he said children with disabilities are punishments, but "if people are inferring that, that's on them."  Of course, "nature's vengeance" and "there's a special punishment, Christians would suggest..." could mean something else entirely.  For instance, an IRS audit, or a check engine light coming on while zooming down I-76.  He goes on to defend himself (or rather, his staffers go on to defend him on his Facebook page) by pointing out that " my personal and public life show a respect for unwanted or disabled children, including our adoption of three of our own children, one of whom we were told by the adoption agency had a 50-50 chance of carrying a gene that would cause her death as a young adult. We found out years later she did not have the gene." (The gene to which he was referring is the one that causes Huntington's Disease).
Mr. Marshall, please don't insinuate that you've born your own cross, when it was but a splinter compared to the journey others have taken down Disability Drive.  That doesn't make you one of us.
Grace's entire life is a fight. It's a fight to find her the right treatments and therapies.  It's a fight to find her an appropriate education.  For heaven's sake, it's almost impossible to find her shoes that will fit over her braces.  It's a fight to hold back the tears, knowing that she most likely will not ever be a college student, a beautiful bride, or a mother.  It's a fight keeping my composure when she asks if God will fix her legs when she gets to heaven.  From the time we wake up, until the time we go to bed, she fights.  There shouldn't be another element in the battle coming from someone who professes to speak for the American public. 
Regardless of his intention, Mr. Marshall used children with disabilities as the consequential meter stick for his definition of bad behavior.  Whether he actually uttered the words "Gods' punishment for women who have had abortions is to have a subsequent child who is handicapped", the meaning behind the words he did choose to use is there.  Please sir, do not use my child, or the children of millions of other Americans as a judgmental measurement of what you consider a lack of morals.
It galls me that someone running for public office would use the weakest among us as political pawns.  To insinuate that somehow, those with disabilities are something to be compared to "nature's vengeance" or "special punishment" is abhorrent, and statements comparing any group of people to such terms should be grounds for immediate removal from the candidacy and the honor of running for public office.  

Saturday, February 19, 2011

Grace's Recovery, Day 7

Yesterday was a week since her surgery.  She was pretty comfortable most of the day, until bedtime.  I think she was just exhausted.  Moving her up and down stairs is scary for her, because she's afraid it's going to hurt.  I can't even imagine what she's feeling.  I know how my hip felt when I injured it, and it it was just one side that wasn't broken in two places!

She asked me yesterday when she was going to be having her surgery.  I explained she had it last Friday.  She asked what they did.  I gave her my standard answer "They made it possible for you to get your medicine without drinking it, and made it easier for you to move your legs."  She asked me "Exactly how did they do that?"  So, I told her everything.  She reached down and found the pump in her abdomen, started giggling and said "That feels funny!"  Yes, I'm sure touching your belly and finding what feels like a hockey puck would be a little...odd to say the least.  Then we talked about her legs, and her muscles, and she said "Well, I don't remember any of that, but I like that I can stretch my legs now."  Telling her before the procedure would have been a disaster.  But I'm glad she knows everything now.  (And the biggest hurdle now is teaching her NOT to lift up her shirt to total strangers, ie., the nice man from CHOP who delivered a special wheelchair, and saying "Hey! Look at my pump!")

I've started jotting down all the considerations that will have to be taken to accomodate traveling with her now.  Medtronics, the manufacturer of the pump has a list of every pump-certified hospital in the country.  When we visit Nana, there are two in Lexington - University of Kentucky and Shriner's Hospital.  If the pump should alarm, we need to take her someplace that can treat the issue.  We have a lovely 24" printout of information including the pump manufacturer, serial number, dosage/output, catheter serial number, etc.  We're looking at a few options as far as getting information to first responders in case of emergency.  Laminated cards attached to her wheelchair with all the info on it, and even a Road ID (roadid.com).  This is a small bracelet she wears with a website and id number that a first responder can log onto, punch in her number, and have her info easily accessible.  Today's plan is to pick the brain of a few ER people and paramedics to see what they suggest.

The most amazing thing is watching her discover her new body.  I came in to find her yesterday, with both hands above her face while laying down.  She was just moving her hands around, wiggling her fingers, and gazing in amazement.

"Grace, whatcha doing?"
"Watching my hands move."
"I see that.  Why?"
"Because I didn't know they could do this."

Her right hand has always been extremely limited in function, and neither of her hands could cross midline.  She's scratching her nose, pushing her hair out of her eyes, pulling up her blanket, and holding the TV remote - all with her right hand.

Her legs have never been straight.  Her knees, because of the tighness in her adductors, have always been pinched together when out of her chair.  Now, she sits on the couch with her legs straight out in front of her, feet resting on the ottoman, as if it were the most natural thing in the world. We actually have to prop her knees to keep them from leaning OUT!

A little about DuPont, and the Ronald McDonald House.  What an amazing place.  I was blown away at the care taken to not only meet the needs of the patient, but the needs of the family as well.  If you are inclined to research charities in which to make donations, please consider the Ronald McDonald House.  Not only was there a separate facility for families to stay, but they provided a resource center in the hospital with private rooms for parents to catch a few hours uninterrupted sleep, showers, laundry facilities, kitchen facilities, etc., all available 24 hours a day.  If your school needs a service project, consider donating towels (non hospital grade!!), books, games or snack items.  St. Joseph's School in Aston, PA donate 100 "Meals-on-the-Go" bags.  The second grade class decorated large, white lunch bags with a Valentine's Day theme, and filled it with Easy Mac, a bottle of water, applesauce, and pudding.  The kids loved it, and so did the families.

And hug a nurse, therapist, and/or doctor.  I've seen PT's cry at good progress, nurses rock babies all night because no one else was there to do so, and doctors come out of their white coats, and slip on the friendship sweater of Mr. Rogers. The responsibility they carry is huge, and sometimes the appreciation needs to be shown.

Let's see what today brings :)

K & G

Grace's Recovery, Day 6

Well, I was going to write this last night, but apparently Scottie's homework was on my laptop so he needed it.  By the time he was done, I was sound asleep.  Oh yeah, did I mention we're home??

The girl is back.  Yesterday morning in the hospital I told her I needed to go to the cafeteria to get food.  "Why Mama?"  "Because I'm hungry."  "Well, get over it!"  I had to laugh.

Hemaglobin and crit continue to rise, and she's healing nicely.  All the incisions look good.  She has horrible bruising on her hips, but she seems to be only dealing with moderate and well controlled pain.  The car ride home yesterday was not comfortable for her at all. (Can someone PLEASE finish the construction on the Blue route??)  But once she got home she was sitting up on the couch with her legs straight out in front of her.  And, she laughed.  Hard.  I was trying to listen to her belly and Ted kept making goofy noises, and she just cracked up.  Laughed until her belly hurt, then laughed again.  Best. Sound. Ever.

Today she's doing good.  Slept 9 hours uninterrupted, and is now sitting with me on the couch watching Game Show Network.  (Don't ask...there's no explanation.)

It's a good day. :)


K & G

Grace's Recovery, Day 5

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.


K & G

Grace's Recovery, Day 4

 First, I need to say thank you for all the prayers, messages, texts, phone calls, sleepless nights and meals you all have shared with me and my family.  I haven't been able to respond to all of them, but they've all touched me and given me strength.  My Sensei gave a beautiful speech when I received my brown belt, where he quoted my favorite saying of his: "Life is a fight.  You get up in the morning, wrap your hands, slip, duck, move.  You wait for your opening, and take a clean shot.  You go to bed at night knowing you've fought a good fight."  We have fought a good fight this week.  We are exhausted, but we've taken huge strides.

Grace's pump is delivering 75 micrograms of baclofen.  She has a completely new body.  Some of the things we're finding are funny, some are unnerving, but overall it just means we'll have to relearn things that she wasn't supposed to be able to do even the first time around. ;)  The tone has been decreased so much, that she is really loose in her legs which is what we wanted.  She's also become very loose in her arms and hands.  Enough so that I've noticed when her hands are relaxed and stretched, she has her Aunt Michelle's exquisite fingers.  And she has one heckuva backhand...which I found out as she was trying to reach for something that now requires much less strength than before. :) Duly noted.

She had homefries and an egg for breakfast, with chocolate pudding.  (we promised...)  She had some mac n cheese for lunch, but not much for dinner.  Progress is a fickle thing.  She's still groggy, and her speech is definately more muddled, but that could also be the baclofen.  She had a dose of valium at 2:30AM and a dose of morphine at 6AM, and none since.  I'd like to pull back more from the valium to get it completely out of her system so we know where we are, but that will depend on whether she has spasms.  If she does, she'll need to continue taking it.  So far, so good.  Her PT session today was amazing.  Her legs were almost fully extended and loose.  I sent a picture to a friend of mine who is a PT, just to make sure I wasn't over reacting or turning into a medical version of "Toddlers and Tiaras".  His response?  "That is AWESOME!"  Stage Mom label - denied.  I feel so validated...thanks JV. :)

She sat in a hospital wheelchair reclined to about 80 degrees for two hours, and she was confortable sitting in her own wheelchair at 90 degrees.  She prefers to lay in bed...but so do I.  However, I can't, so neither can she.

She had one IV port removed as it was no longer viable, but the other is still in.  She's not hooked up, but they're leaving it just in case.  Her O2 sats were at 99-100% last night on room air.  Go girl!

Lisa came to visit for a bit this afternoon, which gave me a chance to shower and grab some food.  Ted will be here all day tomorrow, and his parents (Grandmom and GrandBob) are coming to visit.

She wants out.  She knows she has to really concentrate on eating tomorrow in order for her to get the go ahead to leave.  We'll make a decision with Dr. Miller as the day progresses.

Special thanks to Dale and my Mom for talking my heart back into my chest yesterday, as we were trying to make sense of all the side effects and complications.  Between the two of you, it was truly the smack I needed that yes, we're doing the right thing, yes, this is normal, yes, it's okay to panic, but move on, and move forward.  Never ending gratitude ladies.

She has a really long way to go.  I would love to be able to tell you all exactly what these procedures will do for her, but honestly, we just don't know.  At the very least, it will make caring for her easier, and reduce her pain.  That in itself is a beautiful thing.  Anything else is icing on the cake.  Will she walk?  I don't know.  Although a few of you have dreamt it over the last few months, and honestly kinda freaked me out.  In a good way.  Will she use a gait trainer?  Possibly.  But, the most important question is:  will she be able to do all she was DESIGNED to do?  Abso-friggin-lutely.  Whether that's gaining mobility, causing someone to stop and appreciate what they take for granted, or teaching a total stranger a life lesson, she'll do what she's been made to do.  'Cause that's how she rolls.


Grace's Recovery, Day 3

 Short today, because I'm exhausted.  The epidural and foley catheter came out with no problems. We were told she needed to urinate within the next 8 hours or they'd have to recatheterize.  She tolerated the stretching during PT very well, but we noticed through the morning that she had rapidly diminishing speech and alot of frothy drool (don't know how else to describe it) and had become extremely lethargic. She also stopped eating and drinking altogether. Part of her PT this morning was to transfer her from the bed to a wheelchair.  Upon doing so, the nurse noticed there was quite a bit of spinal fluid that had seeped on the bed.  The next 45 minutes or so was just chaos as doctors were called, she was examined, nurses ushered Lisa and I out as the epidural site was re-examined....

Jump to the end, since that's all that matters.  No more spinal fluid has seeped, the site is dry and healing.  So, we're good there.  The rest of her symptoms were attributed to the cumulative effect of the valium, and her dosage was cut from 6mg every 6 hours, to 3mg as needed.  She has her last dose at 6:30 am, and her last dose of morphine at 2:30 am.  She seems to be really comfortable with no additional painkillers, except for a dose of Tylenol with codein at 11AM.

She's drinking, and eating.  Not as much as I'd like her to, but it's a start.  She is speaking more this evening.  Not as clear as normal, but then again, her entire body is different than it was on Thursday.  She's loose, flexible, and relearning how to position her arms and legs.

Lisa (my ex-husband's new wife) was there all day, and I have to say, thank God.  She was amazing.  She went to get food, and we're both trying to eat clean and healthy.  Neither one of us cared about that with big juicy cheeseburgers and fries.  The day called for it.

Grace is sleeping now, with some color back in her cheeks.  She wanted to go on Facebook to see the card her nana sent, and directed me as to how to respond to posts on her page.  She was too tired to get to all of them.  We laid in her bed afterwards drinking a strawberry smoothie and eating chocolate pudding watching "Cars" for the 19th time.

I'm sure I was told what the plan is for tomorrow, but I won't remember until I look in my notes.  That can wait.

Night my friends.


Karen and Geeba

Grace's Recovery, Day 2

 She is sleeping soundly after a busy day with some busy moments.  She slept soundly for a few hours last night, and so did I.  At around 1AM she woke up and asked me to lay down with her.  I did, but I can't sleep when I do because I'm afraid I'm going to roll over onto her hips. So I got a few hours sleep, which is okay because she was able to sleep. Blood draw early this morning, and the good news is her hemoglobin is at 8.4 after yesterdays transfusion.  Her hematocrit is still only 23, but we're making progress.  They'll draw again tomorrow morning to see where we stand.  The fever comes and goes, but no nausea today.  She's eaten an applesauce, a yogurt, some scrambled eggs and a few sips of milkshake, but she's been drinking much more.  The pain management team checked her epidural site, which is painful for her, and everything looks good.  We switched her valium from liquid to pill form, which she surprisingly tolerates much better.  Of course, it's easier to mask a pill in yogurt and ice cream than the nasty tasting liquid.  After she ate the applesauce I ordered her eggs, and faked a call from Dr. Miller.  Kate called the room phone from her cell phone, and I answered "Hello?  Hi Dr. Miller.  No, she hasn't eaten her eggs yet, we're trying.  Okay, I'll tell her."  Hung up, looked at Grace and said "Dr. Miller said you have to eat in order to get strong enough to go home."  She promptly opened her mouth and ate half a plate of eggs.  We're sticking with soft foods because she still has very little energy, and chewing is too much for her right now.  Her speech continues to improve.  Today we reached a point where she sounded like Wesley from "The Princess Bride."  Remember when he was lying in Miracle Max's cottage, saying "to blaaaiiizzzeee"  Yeah, we're there during the morphine window.  Otherwise, she's pretty articulate, but still limited to two and three words at a time because of her energy level.

She finally got to change positions today.  They wanted her flat on her back for the first 48 hours because of the pump.  Today we raised the head of the bed  30 degrees, and we removed the wedge from between her legs, propping them with a pillow instead.  She had visitors all day.  Aunt Karin and Maria came by this morning, then Dad and Lisa.  Ted and the kids came by as well, and finished with a visit from Bethany and Brianna.  Grace had no problem sleeping in front of company.

We had another PT session this morning that was pretty painful for her.  We figured out she had no meds prior to the session, so we decided I'd do a session after her next dose of morphine.  She tolerated that much better.  We also bathed her and changed her bedding, which was certainly not her favorite part of the day.  We had to lift her off the bed for the first time and she was in much pain doing so.  I can't imagine what it's going to be like after the epidural comes out either tomorrow or Tuesday.

The plan for tomorrow is a blood draw early in the morning, and transferring her from the bed to a wheelchair.  She will also have two PT sessions tomorrow.

I had to laugh. Ted decided that while Dad and Lisa were at the hospital, he would take me out of the hospital for a nice dinner, with real food to celebrate Valentine's Day early.  He didn't fill me in until after I said "Let's go to IHOP".  Hey, it was close, and it's comfort food!  Just makes me laugh.  He was a good sport, as always, and giggled all the way through his belgian waffle dinner.  There were strawberries on it...it was romantic. ;)

Another update tomorrow.