My Sister Dee is Getting Ready for Christmas

It seems like a long time ago that our dear sister almost lost her life, yet here it is almost a year ago and life goes on.

She has accomplished a lot, but the most important thing of all is that Dee continues to have a zest for life,having her wonderful sense of humor and a deep love for her friends and family. I remember the day not too long ago when my husband David and I were visiting her and Van had brought her tamales. These tamales happen to be one of her favorite take-out meals. All of sudden she burst out laughing, it was such a contagious laugh that her visitors started laughing with her, we didn’t know why…we just knew that she was having such a good time. Minutes later when she could finally speak she told us that the tamales were so good that she licked her fingers; she said “see you don’t need fingers to enjoy finger-licking food”.

Dee continues to work on walking on her prosthetic legs and giving it her best, but the task is a very difficult one. It is the equivalent of trying to learn to walk on stilts. When I went with her a couple of months ago for the final fitting of her legs Dee pushed her therapist till they “got the fitting right”. We left that day and Dee carried her legs home, they weigh eight pounds each. To Dee it was like she was taking a brand new spanking set of hot wheels home. She was beaming all the way home. We stopped and celebrated, she took me to Subway and ordered her favorite Subway sandwich and ate it with gusto, she was starving after working so hard on standing and walking on those legs. Currently Dee puts on her legs for a few minutes a day and walks with the aid of a walker, my sister tells me jokingly that it is wonderful to get her butt off the seat and let gravity take hold of it.

Over the last few months Dee has attended weddings, hosted a wedding at her house, attended several birthday parties, learned to clean her house from her wheelchair, went on vacation in the mountains of New Mexico, got her home broken into and robbed twice (gotten over that), painted her living room, and this month is out and about preparing for her Christmas.

As I dwell on the past few months I wonder how Dee made it far and the answer pops quickly in my head…by the wonderful grace of God.

I am so happy we have the wonderful opportunity to prepare for our 2009 Christmas celebration.

Merry Christmas! Go Aunt Dee!!

Magic Legs!

I'm sorry I haven't posted in quite some time; up until recently things have been progressing slowly... but this is a good one! I drove up to Dallas on Wednesday for my mom's appointment to give her new prosthetic legs a try. These are temporary so that her specialist can get the right size for her, so she can learn to use them (think of walking on stilts), and also to allow her knees to conform and settle in size and shape. She is able to bend her left knee which will help tremendously. She has very limited range of motion in her right knee, so I'd imagine she'll be more dependent on her left side. For now here are some photos- click on them to enlarge. I'll try to have video clips posted by the weekend.

And here they are! Quite possibly the most beautiful ugly things I've ever seen!

Putting on her prosthetic "socks"

What a sight to see!

One step at a time...

It's a long way back to the wheelchair, but she did it!

I couldn't be more happy or more proud.

Getting Ready for Prosthetics

My mom called me today to tell me about her first appointment she had today with her new doctor, who will be getting her ready for prostheses to walk! They basically have said the same thing we've already been told, they will have to shrink down her legs (to prevent atrophy when she begins wearing prosthetics).

I'll be sure to post information as I hear it on this exciting new chapter!

Final Round of Surgery: Done!

I'm very excited to announce my mom's final round of surgery was completed last week. Her right knee had been giving her problems and was not healing; her doctor had to go down to the bone and patch things up, so to speak. Last week, she had a final skin graft to cover up the exposed tissue on her right knee and it has been healing... this is the last round of surgery that we are anticipating.

Next on the agenda: once the new skin is completely healed, her amputation sites will be "shrunken down" to enable fitting of prosthesis! I'll update as I find out any new information on this process.

Since my mother's release from the hospital, she has been able to attend a couple of big events, such as last month's benefit show (which was a success!) and my cousin's recent wedding (see photo). She's been adjusting to home life and has home health care on a regular basis, including physical therapy.

I just wanted to take a moment and thank everyone, from family to friends to those who were touched by her story without having met her- thank you for your support throughout this difficult journey. It's far from over, but my mom has made so much progress! She is truly a brave, strong soul, and an inspiration.

Spread the word!

We got a brief mention in the Dallas Music Blog "The Ghost of Blind Lemon" and one of my songs is featured on their Myspace Playlist.

My mother is planning to attend the benefit show this Mother's Day weekend, so if you'd like to show your support and visit with her, this would be a great opportunity. (Event details are listed in the previous blog entry, below)

Hope to see you there!

Benefit Show Sat. May 9th @ Opening Bell Coffee (South Side Lamar)

(click image to enlarge)

Treat your mother to this special event honoring Mother's Day, featuring live music from Chris Holt, Camille Cortinas, Johnny Lloyd Rollins, Chris Gonzalez (The Brushlanders), Iris Leu, Jacob Metcalf, Sam Arnold (Opposite Day), Mary Hestand (Merry & The Moodswings), Casey Shock, and Karen Naomi. Benefiting Delia King - quadruple amputee and septicemia survivor, hosted by her daughter Karen Naomi. Saturday May 9th at Opening Bell from 4pm - 12am, Suggested $10 Donation.

Opening Bell -South Side on Lamar, 1409 S. Lamar Suite #012, Dallas, TX (Map)
www.openingbellcoffee.com

Mamma Mia!

This photo was taken on Easter Sunday, during my mother's brief visit to her home. [Edit] She makes her permanent trip home this Friday 4/17!

I've returned to my home in Austin but will visit the Dallas area quite frequently to check in on my mother, and also to host the "Mama Mia!" benefit show at Opening Bell Coffee (Dallas, TX) on Saturday May 9th.

Home Sweet Home

I have been visiting my sister for months as she travels from hospital to hospital. Even though she could not speak in those first weeks of her illness she touched the hearts of those that attended to her. Well you can just imagine how it is now that she can speak. Everywhere she goes she makes friends with her neighbors, and just because “home” right now is a hospital room she still is very neighborly. She knows all her fellow patients, her nurses, all her medical staff and greets them warmly.

Earlier this week Dee invited me to her rehabilition session as she tested out her new electric wheelchair. That first day she tried out her wheelchair was something to behold; round and round she went down the hallway, laughing all the way, I was doing my best to protect my toes! By day two with her new wheels she was a pro.

At this rehab center Dee is learning everyday functions, which include, dressing herself, using the bathroom, grooming, transporting herself from the bed to the wheelchair and other daily functions that we sometimes take for granted. It is wonderful to see her pick up the phone and dial the number with her thumb and use a TV remote to tune in her favorite TV shows(which include the Young and the Restless and Lost).

We received word today that Dee will remain at this rehab center for another week; next Wednesday, April 22nd she will get evaluated again to see if she can remain yet another week. The process of approving her to stay (by both her medical team and insurance company) is done weekly. We ask for your prayers…we need her to remain there as long as possible. Dee is making huge strides in her rehab program but she still is fairly weak from her ordeal and has a long ways to go.

Dee will be getting a 4-hour pass to go home on Easter Sunday; what a miracle! She is anxious to go visit her permanent “home sweet home” even if it’s only for 4 hours.

Please don’t forget her benefit show coming up in May, Dee plans to be there.

Adapt

I'm posting this from Austin, TX... where I've spent the past 2 years prior to my mother's sudden illness. I'm enjoying the festivities of SXSW for the weekend and the great weather along with it.

Early last week we interviewed with social security (disability). Unfortunately, my mother was turned down due to not having enough credits to qualify for disability benefits (she has mostly been a homemaker until she began working last year). I'd like to push for an attorney to appeal the decision... she has worked and contributed her earnings to social security throughout her lifetime, so you never know.

My mother does have private insurance. However, the reality is, they don't cover everything 100% and with as long as she's been in the hospital (today is March 20th, she was admitted Dec. 24th...) and with as many physicians she's seen, surgical procedures... the medical equipment she will need once she is released (wheelchair, prosthesis, etc.)... it adds up and we're beginning to fear she's going to max out soon. Of course, it's 5pm on Friday and now I'm remembering I was supposed to call her insurance to find out her running total of costs! Anyway, what I'm getting at is money is suddenly seeming to become a very real issue. (Thank you, by the way, so very much to those of you who have contributed to her medical fund... you have our warmest thanks and gratitude). Fortunately, Esy spoke with a former social worker recently and has tapped into a long list of resources available for scenarios like this. There is hope; it's just going to require patience and diligence.

Shortly after the disability interview, my mother developed shingles which are commonly stress-induced. Shingles have set her back some on progress. She also has a scab on her right leg that has not healed and her surgeon may decide to graft skin on that area again. This will add some recovery time, pushing back further the date to move on to rehab.

Last week, a very special visitor came to meet with my mom- Jennifer Griffin, who is also a sepsis survivor and quadruple amputee. Her story is quite inspiring and I'm so happy to have found her. She was very sweet and gave my mom a slip on hand tool that holds a pen so she can write. Just the day before, Dee was terribly upset because she could no longer write the way she used to. Since then she's been practicing her penmanship, which is also a part of her physical therapy.

I helped my mom brush her teeth... she's been practicing and can hold the toothbrush with her thumb. She did pretty well but still required a little help. I told her not to worry, that she would once again be able to do the things she has done before; it will just take some time as she'll have to find new ways of doing them.

I would just like to encourage any family and friends who have not been able to visit lately, that it is perfectly safe for you to stop by and see her, shingles or not. Children who have either already had chicken pox or been vaccinated (over the age of 2) are not at risk. Just be sure to practice good hand hygiene (wash hands and wear gloves). You may also want to wear a gown if your clothes come into contact with her bed linens. Really the only way you would contract it is if you touch her open sores... these are just some precautionaries to follow, and if it makes you feel any better they're already beginning to clear up.

Since I'm in Austin this weekend, please tell her you're stopping by on my behalf. No pressure. :)

Hands

I've always had a fondness for hands. They can sometimes be pleasantly attractive. I remember I would sometimes look at my mom's hands and notice the skin, shiny and a little taut... and I would think, "what pretty hands."

Sometimes, my mom would make it to where you couldn't notice anything except her fingers. The middle ones in particular. She's very feisty. When she was younger, one of her middle fingers got caught shut on a car door. The healed tip had an odd little shape to it. This was one of the things I feared I would miss the most as she lay in bed, not yet awake from her medicinal coma in the hospital as her fingers turned to black and were withering away like leaves that had fallen from a tree.

I asked my step dad if it was weird that I occassionally have a hard time remembering my mother the way she once was... it seems so long ago. He said in agreement, "yeah, it does seem like a long time ago."

The wound care team decided it was time to leave her hands exposed; the skin, though still a little scabby with edges peeling off, has healed on both hands and has a normal tint. The plastic surgeon who worked on her hands once mentioned he was a "hands man," that was his specialty- indeed. Her right hand in particular still has it's old shape, minus the fingers. And as strange as it sounds, I think it's quite pretty despite everything it's been through. She was able to keep the skin originally on her palm so it looks the same as before. The back of her hand has skin borrowed from her back. Her left hand is a little smaller because she lost a few knuckles starting from where her pinky once was, and the skin on the palm is partially borrowed. Both thumbs are wrapped up to protect them... they still have a little ways to go because the tips are now gone, but she does have the knuckles to bend and straighten them. She calls them her "dancing thumbs".

The wound care doctor gave her clearance to bear weight on her right hand, and her occupational therapist (OT) has been working on strengthening her shoulders and arms to where she can become more independent. She gave her a Velcro cuff that wraps around her hand, and small items like a spoon, fork, toothbrush, etc. fits into a slit on the cuff. The first time I saw my mom use it, her task was to scoop up dry lentil beans and empty them into a bowl. Her OT joked that she would have to count them all! Yesterday, I walked into her room at lunch time and she had just finished feeding herself for the first time! She did a great job, really... her only mess was two beans (pinto, cooked) that had dropped onto her lap.

Once a week, her care staff meets to review her progress. During the most recent meeting, everyone agreed she has been healing much faster than anyone could have anticipated. She might be released in as early as two weeks (which is now about a week and a half away) and transfer to rehab for an additional two weeks of therapy, then may be cleared to return home.

When she comes back home, she'll be wheelchair bound because her hands and legs won't be ready for prosthesis just yet- it may be a few months before that process begins. But at rehab she should learn how to transfer herself from a wheelchair to her bed or bathtub bench... we just have to make sure everything is ready at home for her return. Talk about a nightmare, clearing out the clutter and preparing to rennovate the house so that she can once again function at home. My step-dad and little brother are stuck with that task.

I might be a little unbiased because it's not mine to deal with, but really, it's a good problem to have.

Save The Date - Benefit Show (Mother's Day Weekend)

I'm working on a benefit show which will be held the day before Mother's Day. Several acoustic acts, myself included, will be performing. Details as follows:

Saturday, May 9, 2pm-midnight

Mother's Day Benefit

Opening Bell -South Side on Lamar, 1409 S. Lamar Suite #012, Dallas, TX (MAP)

Treat your mother to this special event honoring Mother's Day, featuring live music from local artists. Benefiting Delia King - quadruple amputee and septicemia survivor, hosted by her daughter Karen Naomi. Suggested $10 Donation.

Thanks to those who were able to stop by for the birthday celebration over the weekend - we had a great turnout and my mother truly enjoyed herself!

The Reconciling Walk

I composed "The Reconciling Walk" and have shared it with both my sisters; Nana and Dee. Nana cried as she was reading it, smiled afterwards, gave me a hug and thanked me. Dee kept saying "you got that right, you betcha, and then gave me a big smile and told me that if she could she would give me a big bear hug. My sisters are very special; I love them both very much. Dee asked me yesterday to share the story with her friends, family, and readers, so I am.

The Reconciling Walk – Inspired by Strong Powerful Wonderful Healing Sisterly Love (By Esmeralda Moore)
January 12, 2008

As I hung up my cell phone after talking to my brother Eliseo, I swallowed the huge lump in my throat and told myself to stuff Kleenex in my pockets and take my walk. I looked at the time; it was 4:45 pm. I told myself that it would be the one of the most important walks in my life. “Walk for just an hour" I told myself, "just do it, do it for Dee, do it for Nana, do it for yourself:”

Since Christmas day 2008 when we almost lost my younger sister Dee to a deadly bacterium my regular exercise routine has been put on hold, but regular power walking is always on my agenda, I make it a point to take my power walks. Today’s walk was a “must”.

Eliseo, also known as “the sister’s boy-as opposed to “mama’s boy” and lovingly named Bebe (Spanish for baby) by our oldest sibling, my sister Emma (Nana), he gave me an update on my sister, Dee. Bebe is the youngest of 3 sisters and 2 bothers. Bebe refers to his three sisters as “the Darrels” Bebe likes the Bob Newhart show, his nickname for his 3 sisters came from this show. Nana is Darrel #1, I am Darrel #2 and Dee is Darrel # 3. “Have you spoken with Van (Dee’s husband) or Karen (Dee’s eldest daughter) over the last few hours?” He asked. “No”, I said, “What’s up”. It seemed that my heart skipped a hundred jumps in a second; somehow I knew it was not going to be good news. He sounded like he had been crying, and to have our little big brother (he is 6’2") cry rips at the heart of his Darrels. “It’s not good, you better go workout, that’s where I’m headed”. My Darrel #3 is going to lose her fingers and her legs, the doctors have told us they will need to amputate as soon as possible”, he said gruffly. We cried together over the phone, I felt us holding each other. I took a deep breath, stopped my hysterical crying and told him to have a great workout.

I headed out the door, my pockets full of Kleenex. This walk would be a sisterly walk. Sadly I realized that it was official now, Dee would be handicapped for life. Dee now joined Nana, and her husband Van in the “handicap” category. Nana has fiboratious tumors embedded in her spinal cord, she was born with it. Nana lives with severe pain, and has lost some functions of internal organs over the last couple of decades. Her pain has always been part of her life. Van hurt his back years ago in a job related accident and also lives with severe pain, he relies on a walking cane to help him walk. Dee tells me that she always has great parking spots since both Van and Nana have permanent handicap stickers; and that this is one of the great added benefits of being the driver of handicappers she says.

The fact that my older sister Nana is alive and still walks at the age of 55 is a miracle in itself. Nana has a slew of doctors and medication, Nana calls her heavy dosage of meds her daily cocktail. She bravely holds off taking any pain medication till late evening; she tells me as long as she feels the pain she knows she is living. We have been told by many doctors for many years that Nana should be in a wheelchair; Nana proves them wrong every year. Nana and Dee live in the same city, and our younger sister Dee has been “Nana’s taxi” for many years driving Nana to her frequent doctor visits. I couldn’t help but recall when Nana had a series of major surgeries; the family had spent many days and nights in hospital waiting rooms; history was repeating itself. It’s not fair I screamed in my head! I want both my sisters to be as healthy as me! I headed down the steps leading to the sidewalk and noticed that once again it was one of those “warm weather breaking sunshine winter days”. It was a beautiful day. The screaming in my head stopped as I felt the warm sun on me and took in the beautiful day.

I knew that I would have to go over Dee’s “list”; just as I had for Nana’s list over 15 years ago when complications from Nana’s birth defect had emerged with a vengeance. I told myself to calm down and make the list and get it over with. The “list” would bombard my Dee and I needed to have offsets ready, my sister would need me to provide the “list” offsets.

The List:

The wind blew my hair and into my eyes- frustrated I removed it. My sister will not be able to do this small gesture I thought. Then a new thought emerged; she will be able to feel the wind on her face…yeah! Her long thick hair…I thought…it will be necessary to cut it short. Short hair is a lot easier to manage without fingers. I recalled that Dee had previously worn her hair short and that she looks very pretty in both long and short hair. We can do short hair, I thought, not a big deal. Maybe I will cut mine short too I thought. We can both have short hair; I will start hunting for good short haircuts for us.

As I walked, I recalled how much my sister Dee loves the outdoors, how much she enjoys flea markets, camping and hiking. A new flood of tears came flowing down- “It’s ok,” I told myself we will make sure she has one of those fancy wheelchairs, knowing my sister she will mischievously pretend to run over my toes. I took us at that moment to a flea market outing in my mind and picked up my pace. Momentarily the tears were replaced with a small smile, with my heart beating strong from my power walking.

As I rounded the corner of my block, smiling I looked up and noticed the beautiful landscaping in my neighbor’s front lawn…my smile faded as I cried over this new list item; how will Dee continue without her gardening hobby? Dee has a green thumb and loves gardening; she grows her own vegetables and has tons of house plants. Offset- there is no way she will cease her gardening hobby; we will get her gardening gloves to go over her prosetic hands. I begged God to please let her keep her wonderful green thumbs, yes that might be possible I told myself. I wondered if I could find gardening gloves with big smiling faces and little red hearts; my new imagined gardening gloves for my Dee gave me courage to continue with my reconciling walk and the list. New tears emerged again coming down fast and furious.

I refused to use my Kleenex to wipe my tears. I wanted the tears to clean my wounded heart. I let the tears fall, but they were clouding up my glasses and I didn’t want to trip so I used some of the Kleenex to wipe my glasses. New item- what about Dee’s glasses, will she be able to put them on ok? Will she be able to wipe them? Offset-maybe we can pursue eye lasik surgery for Dee.

Dee loves to be outdoors especially on sunny days. I imagined her in one of her camping trips with her new hands, a new shiny wheelchair and her prosthetic legs. She can always use the wheelchair along with her legs; she can switch back and forth. I smiled seeing Dee at her camping trip in my head. The tears stopped. There was no doubt that Dee would continue to love life and continue to cherish her outdoor adventures.

As I continued my walk, and turned the corner and headed towards my trail on mile two, feeling the warmth of the sun on me, I knew my sister could and would still feel the sun on her face; her senses were still all intact. I knew that like Nana, Dee would continue to be strong and courageous, and, like Nana, she would love life even more. I knew that today’s list would most likely grow over the years. Any new items on the list will always have a positive offset I told myself.

With love swelling inside of me for my two sisters and with my two powerful legs carrying me I picked up my pace again. I knew that their courage and strength flowed in me; they had been training me for many years to take life and to live it to its fullest. I am so very proud and grateful they are my sisters. I finished mile four at 5:45 pm, it was a great walk, my sisters had joined me in my heart on this walk. My smile was huge as I walked up the steps to my front door. God had also joined me in my walk; I had felt Him holding my hand and gently reminding me all the way what a grand prize my sisters are. He had helped and comforted me during with this reconciling walk.

I couldn’t wait to tell and share my walk with Dee and Nana.

Milestone Birthday Celebration

Dee approaches a milestone birthday this week... a milestone in so many ways. We're truly grateful to have here here with us after all she's been through these past two months. We're celebrating this Saturday February 28th in the hospital cafeteria from 2-4pm. If you'd like to be included on the guest list, please send an email to request an online invitation.

She began her Hyperbaric Oxygen Therapy yesterday- Here's how it works: she is encased in a bed, or "chamber" and is exposed to pure oxygen. This helps supplement the oxygen her blood supply is already providing to her wounds. The pressure changes in this chamber much like a it would on an airplane or underwater diving. She can even see through the case (most patients watch movies during treatment), and can also communicate with people outside the chamber. She'll receive treatments 5 days a week.

Hot Wheels

They say the way to a man's heart is through his stomach. They say.... well... on second thought, I don't really know what the saying is for women, but I can tell you the way to my mother's heart: Hot Wheels.

A nurse noticed today that my mom has some hot wheels still in the packaging up on display. My Aunt Esy explained that my mom collects Hot Wheels, and that one of her nephews used the money he had been saving up in his piggy bank to buy them for my mom as a "Get Well" gift.

Well earlier this morning my mom got the ultimate set of hot wheels, the only kind that can provide her any kind of mobility or freedom: a wheel chair. She & I were free to roam around wherever we wanted, as long it remained on the hospital property. I've never been so excited about a freaking wheel chair in all my life. It was my mom's first time out of the hospital bed that didn't require some kind of procedure or facility transfer.

Initially, the physical therapists granted us an hour. We used up the first half outside enjoying the beautiful sunshine and gusty winds. "You have no idea how good this feels" she said, as she was basking in the sunlight. I teared up a little. I noticed her wound specialist had arrived as he left his car from the parking lot. We went back inside soon afterward because it was getting nippy. As we rolled into the lobby, one of the nurses summoned us back to the room to see the doctor who had just arrived. Our time was cut short. My Step Dad and Aunt Esy, responding to my excited phone call, showed up to join in on this momentous occasion just as we got back into the room.

My mom will be spending more and more time on the wheel chair as time progresses and the doctor assured us there would be better schedule coordinating so that her time wouldn't be cut short again. As her doctor examined her wounds he said that she was healing very well and looked much better from the last time he saw her this week.

On Monday she'll begin wound care treatment in the Hyperbaric Oxygen Therapy Chamber... more details on this to come.

She's settled in nicely at the new facility, has attentive nurses and caring staff. Things are looking up.

Movin' On Up

Eariler on Monday my mother's trach was removed, since she has completed all planned surgeries, and the hole is closing up nicely! Her voice sounds good as well.

She'll finally transfer to another facility either today or tomorrow, depending on when we give the ok. I just spoke with a rep (who is actually an RN) from one of the facilities... and in all honesty they are the front runners. It's a little further away from where I'm currently staying than the other facilities we are choosing from, but it's newer and physician owned and they have their own operating room to accomodate various procedures. Now, I'm not saying she'll need to use this room, but if for some reason it comes up she won't need to be transferred back to a hospital- She can receive surgical care in-house. I'm going to visit this facility shortly; I just wanted to give an update that she will definitely be moving soon... I'll post how she's doing once she's settled in.

[Update: we decided on a different facility than what was mentioned here]

Also, I just wanted to remind everyone of the show in Denton this Friday at Boiler Room - Opposite Day and Shaolin Death Squad have agreed to donate the funds they raise from this show to my mother's medical expense account. Hope to see you there!

Surgery Tomorrow (Friday)

Picking up where I previously left off- the insurance company approved my mother's stay at her current hospital until after she recovers from surgery. It took a little back and forth (and some help from her doctors), but it was finally settled yesterday.

There will be a final procedure (skin grafts on her hands) which is scheduled for tomorrow February 13th at 7:30am. I haven't made final confirmations with her surgeon yet, but I believe she will stay in her current room for about 4 days afterword, then will be transferred to an LTAC (Long Term Acute Care) Facility once she has recovered.

Let the healing begin!

Benefit Show in Denton - Feb. 20th

I might need to draw a diagram for this: My second cousin has a boyfriend, who has a band... this band has agreed to play a benefit show for my mother. I found out the name of this band last night, Opposite Day - they are based out of Austin. I already know one of the band members through a mutual friend and I've even played an acoustic show with him in Austin.

...Is life not great?

I'd like to take this time to thank the band for their generosity in donating the money they raise from this show to my mother's medical expenses.

And now I'd like to ask you, the reader, to please attend this show if you are available and would like to help. Show details are as follows:

Friday Feb. 20th, 9pm at Boiler Room - Benefit for Delia King
101 W Hickory, Denton, Texas 78201
Cost: $5

Opposite Day, Shaolin Death Squad

No Longer in ICU!

I've found myself away from the computer most of the week and in a constant state of motion... but the good word for the day is that my mother graduated from ICU to a regular room on Wednesday! She is no longer hooked up to all those monitors and is healing at a remarkable rate; the skin grafts on her legs from last week's surgery were a success (despite the few days she needed to recover)!

The nurses gave her a heavy dosage of pain and anti-anxiety medications to keep her calm during the move. When she woke up, she saw the TV mounted in front of her and heard the voice of her grandaughter in the room. She thought she had been smuggled out of the hospital and returned home in her bedroom!

Unfortunately we're not quite there yet...

She'll need another procedure to graft skin on her hands next Friday. The tips of her thumbs have exposed tissue but hopefully they have healed enough for a skin graft. If not, the surgeon will tuck her thumbs into her abdomen and "borrow" tissue to heal her thumbs.

On the down-side: The high & mighty insurance company has deemed her too healthy for her current cozy hospital room and want to transfer her to an LTAC (Long Term Acute Care) facility. However, this is an awkward time to transfer her - she has surgery scheduled next week, and because the LTAC facility doesn't have an Operation Room they would have to transfer her to and from and back again between both facilities. All that moving around is very exhausting for someone in my mother's state. We've plead over and over with the case manager but the insurance company (since they pay most of the bill) has the final say in regards to which facility they will and won't pay.

Any close friends or family who plan to visit Delia, please check with us before making your trip because we truly don't know when and where she'll be next. Feel free to call me if you have my number, or you can always email me at info@deliaking.com - Please understand that I am unable to share her information with anyone she does not know personally.

-Karen

Thursday Night's Surgery

While this entry isn't graphic in nature, I do strongly urge parents to read this before allowing young children to read on. That means if you're under 15 - go grab your mom or dad. Otherwise, I'll tell Aunt Dee on you! :)

I apologize for not posting in a few days; we were faced with a difficult decision and, along with my mother's approval we agreed to have surgery Thursday evening to further amputate both her legs through the knees. This is to facilitate walking using prosthesis - both her lower leg bones were too short to allow her to use them otherwise (weight bearing is an issue). My mother said, as the doctors gave their opinions, that she wants to walk.

This is the greatest chance she has of walking.

Another reason that motivated me to agree to this decision is something I haven't shared online. I mentioned previously that her wounds were left open from the amputation so the surgeons could monitor healing of the tissue. What I didn't go into detail over is how excruciatingly painful it is for my mother to endure wound dressing changes on her legs, which happen daily in order to prevent infection.

She had surgery Thursday evening. The anesthesia team came in to prep her at 4:15pm, but the actual surgery probably didn't start until about 6pm... and ended somewhere between 9:30 and 10pm. We received regular updates with the assurance from the surgical nurses that she was doing well. One had even called my Aunt Esy to let us know what an inspiration my mom has been to the hospital staff, and that my mom would be in their prayers. Finally, one of the surgeons came out to let us know everything went well and to let us know, again, that my mother is an inspiration. The other surgeon (there were two) sat down with the family to show us pictures of his work- he performed the skin grafts on her legs. While most people probably wouldn't like to see fresh surgical pictures, please understand that my step-dad, my aunt, and I have all seen my mother's open wounds during her dressing changes. It was such a relief to know that she can finally begin healing. As my aunt has said of my mother, "she's ready to move on to the next level."

Friday morning after the surgery, my mother was in a lot of pain and had a fever. This is normal for post surgery, but needless to say we don't want her to be in pain. She had slept some in the afternoon but during the time she was awake, she was still in a lot of pain. After trying different pain medications throughout the day, the nurses were finally able to find something that helped relieve both pain and anxiety. When I left last night, she was calm and fading in and out of sleep.

Before going into surgery, I had suggested to my mother that she might need to use a wheelchair to get around, but would most likely be able to have her prosthestic legs on so she can get up and walk around when she wants, and still have her wheelchair so that she can rest when she needs to. I've read over and over that having an amputation at the knee level takes up to 80% more energy to walk using prosthesis. Having both legs amputated increases it to more than double that percentage.

I spoke with the prosthesis specialist (a prosthetist) Friday afternoon. She said my mother's number one priority is to heal. Once she is healed, she will be able to go to a rehabilitation center. The prosthetist explained that my mother would most likely first be fitted with a hand prosthesis so that she can learn how to grasp objects (this is the third medical professional to say "this is huge that she still has her thumbs!")... and learn to do basic tasks that most people take for granted, such as brushing her teeth, going to the bathroom, picking up things, etc. This will take some time, but once she is comfortable using her hands, she can then begin learning to walk- This is highly dependent upon my mother's motivation level because it will be very difficult, but she is a brave, strong woman; it's our job to support her during this journey. They'll start her with "stubbies" which will be lower to the ground and weigh much less than a full prosthetic leg... once she gains confidence and mobility, they will increase the height until she is ready for full length legs. The reality of this is, it will be very exhausting for my mother to walk. The prosthetist explained it as, "if you're walking a mile, it will feel like 2 and a half miles to her." Once my mother reaches that point, I'd like to find out how much each prosthetic leg weighs, and then invest in leg weights and wear them myself so I can at least understand how much energy is used to carry the extra weight anywhere she goes when she walks. Of course, I won't understand what it's like to use the concentration level to put them on using her prostetic hands, or to balance on them while walking, or the frustrations she'll invetably face. But I can be there for her.

-Karen

Wake Up Call (No, Seriously)

This morning as I lay in the warm and cozy bed still sleeping, my cell phone rang. It was a phone number I didn't recognize. Since I've been receiving plenty of important phone calls from new numbers, I didn't hesitate to answer.

Hello?
Hello, is this Karen?
Yes...
Hi, this is Mary from the hospital. Your mother wanted me to call you so she could talk to you.
Oh- ok!

I heard my mother's voice, stronger than it's been:

Hi baby
Hello!
You need to bring Isabella to come see me. Tell Daddy to bring Isabella. And tell Leah to bring me some apple stuff from Cracker Barrel. Also, tell your Uncle to bring the kids so I can see my nieces and nephew.
Ok

As soon as we hung up, I realized that was the first time I had spoken with my mother over the phone since the day before she got sick. My mom likes to keep in touch with me (and all her relatives!) by phone... I should have known this illness wouldn't keep her from being who she's always been, back to making her morning phone calls (even if she had to improvise a little).

-Karen

Message from Aunt Dee to Donovan and Emily

Aunt Dee requested these exact words be posted:

Donovan - Wow, you amaze me. Try to remember that your Grandma (Esy) has a lot on her plate. Keep her in your prayers. Help your momma. I wanted to be back for your birthday.

Emily - Hey Emily, your birthday is coming up (in May); just want to let you know I haven't forgotten your birthday. I want to say "Happy Birthday" early just in case I'm in surgery.

Love, Aunt Dee & Uncle Buddy

Best Friend

Yesterday my mom said "Bye bye best friend," as the respiratory nurse wheeled off the ventilator machine that, up until that day, had kept her breathing since Dec. 24th. She's officially breathing completely on her own! She also no longer requires dialysis - her kidneys are fully functional with the help of medication. She's also had a steady diet of ice and juice.

These are all wonderful things and I like to try to stay on the positive, but in all honesty we hit a bump in the road that distracted me from being fully appreciative of her miraculous improved health - her surgeon wanted to amputate further up both legs above the knees.

During the first surgery two weeks ago, the surgeon wanted to be as conservative as possible and only get rid of dead tissue. She informed us more amputation may be necessary if there was not enough viable tissue; my mother's legs were left open so they could monitor the healing. Unfortunately, the tibia (lower leg bone) is not long enough to accommodate prosthesis for walking on either leg... if my mother were to walk again it would require further amputation.

This was a huge blow to our momentum but after consulting with more family members we decided to get a second opinion; The surgery was scheduled for this morning and as a result was canceled so that we could buy time and become aware of all options while keeping my mother's rehabilitation and best interest in mind. The second opinion came in this morning that it might be possible to amputate through the knee (rather than above) so that she can have even greater chance of walking again. More leg length = easier to rehabilitate.

Obviously we're much happier with the second opinion. Please send positive, hopeful brain waves and prayers that my mother has enough viable tissue to cushion both amputations through the knee... we don't want it above the knee! :)

I don't know when the surgery will take place; the sooner the better - she has multiple open wounds on her legs that are going to require skin grafts which won't begin until the day of the surgery.

Thank you again for your continued support... and stay off icy roads!

Karen

P.S. She was approved to eat pureed food today. She's such a healing machine!

First Words

I got confirmation from a respiratory nurse last night that my mother's tracheotomy tube will come out once she is completely off the ventilator (I apologize if my previous post was confusing on this topic!) She was breathing for 16 hours on her own yesterday, and each day they will increase the time by two hours.

Today at lunchtime she received some speech therapy. They put a cap on her trach opening so that she could breath solely through her nose and mouth; which she was able to do comfortably. She was told to take a deep breath (and cough a little), then to try to say "Hi". After a few deep breaths she was able to let out a hoarse, gurgly "Hi." My Aunt Esy and Uncle Eliseo were in the room as well, getting teary eyed to hear my mom speak for the first time in a month. A little while after my Uncle left, my Aunt Emma (nicknamed "NaNa") showed up along with my Grandfather, Eliseo. My Aunt Esy was excited that my mom could now speak (sorta) and asked her to say "Hi NaNa"... so she took a big deep breath, and out came a hoarse and very low-pitched "Hi NaNa". We couldn't have been happier and had a good laugh at her endearing newly deep voice.

NaNa brought a whistle for my mom to use in case she needs the nurse since she is unable to speak out or use her hands; the nursing staff responded that she wouldn't be able to produce enough air to use the whistle, so instead they taped a sensor pad on her pillow that will alert them if my mother needs assistance; she would just need to touch it with her head. She has good mobility of her neck and shoulders so this was a huge relief for me to know she can now call for help at any time.

-Karen

Welcome and Thank You!

This is the first post regarding my mother's progress from her survival of meningococcemia, or Meningococcal septicemia, a deadly bacterial infection. We don't know how she caught the illness but it left a devastating trail of life-changing complications.

She is currently awake and alert, but still recovering in the Critical Care Unit. She is unable to speak as she required intubation when she was admitted to the hospital on Dec. 24th (she was unconscious) , then received a tracheotomy a few days after waking up. As far as I know, the tubing has been removed and she is breathing on her own. However, the doctors have not closed the opening from her tracheotomy because she is still undergoing regular surgical procedures. She receives dialysis regularly but after a little help from medication treatment last weekend, she was able to produce more urine. In fact, I visited her earlier this afternoon and her pee was bright yellow and clear (and there was lots of it!)

She had surgery on Tuesday Jan. 13th to amputate her fingers on both hands, and both legs below her calves. Fortunately, her thumbs were spared. My mother will require several months for her recovery, including potential skin grafts, then most likely will spend time in a rehabilitation center and learn to use prosthesis to walk.

Edit: We are now accepting online donations through this site via PayPal (on the right).

Thank you for your time; your thoughts and prayers would be most appreciated.

Also, be sure to read the story below written by my Aunt Esy.

-Karen