This New Journey

So, its been a over a month since I've been home. Tomorrow makes 2 months since mom left. Not now- but there are times that piece of reality hits me hard. A couple of weeks ago it hit me in the cereal aisle of the grocery store four blocks away from where I live. There, in front of the Captain Crunch, I went clean off. On God. Angry. Enraged. Fortunately for others, this lament went on in my head. I don't know how long I stood there- There with the bright harsh fluorescent lights above, the vivid colors of Fruity Pebbles, Tony the Tiger, and all things representing the childlike 'carefreelessness' of a Saturday morning crunching- with milk and no worries- I grieved. And, I grieved hard. I continue to grieve hard.

Because I valued my mother. I loved her. Adored her. Heeded her advice. Cared for her. Cleaned her. Fought for her. "There are people who don't value other people, let alone their own mothers!", I yelled at God. I LOVED MINE. Why??? Why, when I offered my suffering for her suffering? How could I give so much and have so much taken from me?
And, she suffered. She suffered tremendously. Her going was not a smooth one. Maybe in the last hours, but there were years, YEARS, of torment. So, I dared God to get mad at me. Because its not like we did not ENDURE. Oh, we endured, all right. So, HE (or SHE) was going to endure my rage.

Much has gone on since I've last written. Mostly, inside of me. There's a fiery sea churning about. A tempests of sorts. This would not appear so on my surface, but it is truly evident in my soul- coursing through my veins.

I've always found the metamorphosis of the caterpillar intriguing. But, not in the way most school children observe. You know, with cutesy songs of the transformation and colorful pictogram's illustration the stages. I was always intrigued with the process because I imagined the cocoon stage as mysteriously violent. Not violent in the most monstrous of ways, but, indeed violent in a certain catastrophic way. To go from this earth bound creature with its gazillion little legs and its methodical energy exertion of a crawl to a thin, light winged creature was so astounding to me. To the curious, head-tilting-to-the-side, human eye- the cocoon is silent, barely moving. Most children will wait, often impatiently, for the crinkling debut. But, to me, the sheer silence of that chrysalis stage signaled to me that something must be happening deeper...the cocoon- a claustrophobic pressure cooker for some event happening explosive on the cellular level...This is no mere debut as a dainty creature. Snakes shed their skin, so can spiders, lizards can detach parts- but to completely change the entire structure of who you are and emerge different- that is some sort of nature sorcery at work. And, it is that special alchemy of spirit I've always respected about the Butterfly.

There's an alchemy at work in my soul right now. I don't what the mixture contains or what I'm becoming. All I know is that I get angry at God while buying cereal, people irritate me easily, I haven't had one of those 'dreams' where she comes and talks to me and I'm getting childishly impatient at this. I can sleep for 9 hours straight and crave more and still, I'm tired all day.

I can feel the prick of winter coming. I know its early. I'm not hibernating. I'm 'cocooning'. And, right now, I'm a little wistful- I don't know what kind of creature I'm going to end up being (or uncover, for that matter). But, I will allow myself to surrender to the Change- in all of its catastrophic glory.

I have no choice. This is my destiny. These are the cards I've been drawn.

I surrender to nature's magick.

Leaving On A Jet Plane

At airport. Going home. NYC, that is. July 26th. That feels like ages ago. On that day I was flying in to Louisiana- in a completely different place. Now, I leave over 60 days later - completely different.

I am excited to go back home. More than ready to resume a routine. Find some order. Create some stability. But, leaving is bittersweet. This whole experience feels epic. Like comething out of a movie. And, why do we equate larger than life experiences to that of a movie, something fictitious? Perhaps, feeling this larger than life
is life.

I've learned much. I know I have much much more to learn still. I'm grateful. There were unexpected moments in this trip that felt 'cinematic', too. There were the intense family dramas that led to bigger family revelations. There were the rediscovered friendships that bloomed at just the right times. There were more losses, but never as large as the BIG one. There were many victories. Victories in spirit and growth. Comfort zones were stripped bare. Every part of me became vulnerable. Raw. Exposed. Every part of me became new soil. Unearthed. Now ready to be tended.

And, that's a revelation that I felt yesterday. Instead of obsessing over how to continue my journey, how to process it, how to craft it into something- I became reacquainted with my biggest lesson of all- Absolute Surrender.
Instead of crafting something out of all of this, I have chosen to allow myself to be crafted.

It is liberating to realize this. Takes the pressure off. In surrendering, I can find complete freedom.

I Pray In the Tub

There are just days before I leave. Back to my urban home. I miss it. Very much. But, I must say that anxiety is creeping upon me. Anxiety about leaving. I leave behind so much.

If told in advance that I would be spending a great portion of this year HERE in the south doing what I've done, I would have to been dragged kicking and screaming clawing anything within reach. Fortunately, I did not get that memo- hence, a bit more grace on my part. Coming home (Louisiana) always resurrects old and deep demons for me. Turbulence. Haunting remnants of the past. Very alive ghosts. Coming home always required much of me, much preparation, much prayers for strength.

And, though this trip has been the most painful of them all- I discovered hidden treasures. The beauty of true friends. The kind of friends that show up and are THERE when you need it- giving so freely gestures that do wonders for my spirit. Visiting with family and really listening to their stories- their trials, their triumphs, loves lost and gained. Being around for birthdays and gatherings. Eating so much comfort food that you are filled to the brim. Hearing distinct styles of talking only native to this region. Being pulled and called to slow down. Slow down with everything. Waiting in line, strolling, taking it easy. Watching sunsets unobstructed over fields and fields and fields.

All my senses are on fire, especially the ones unavailable to the naked eye. I don't know quite what to do with all of this raw feeling. Its not comforting to feel exposed. But, I feel I need to embrace all of this vulnerability. The only thing is- I hope to make good decisions out of this place. The kind of bold ones that people may question, but you feel secure about because they come unhinged and with absolute honesty. Because you are so exposed to your truest self underneath it all.

I suppose I should allow room for mistakes. Its just that mistakes now come at too high a price. Normal failures that I could shrug off carry much more of a blow because I am so weary.

So, I said a prayer. In the bathtub. I've been praying alot in the bathtub these days and will probably pray myself to sleep. I prayed for God to send me everything I need to get through this time. Strength, naturally. But, much more. I asked for the confidence to trust my instincts. I invited people in my life who will not require much from me but offer themselves freely and tenderly. I prayed to be equipped with an arsenal of supplies I'll need for these heavy days. Those supplies could come in the form of good movies, songs designed just for me, or just good company. I welcome it all. And, I told God that I expect all of this and more. Because it is a good thing to ask and an even greater thing to receive. Because it would be something he (and she) desires. So, I ask knowing it will come. Bountiful. In waves and waves and waves.

I prayed this. And, I feel calmer. I'll sleep tonight in the sea of this knowing.

One Bad Move...

So, the Big Move didn't go so well. Last minute, there were cancellations. I had a breaking moment. Fortunately, things and people came together. Though the move extended to an extra day, it got done. We are finished.
It was surreal cleaning the final touches to mom's apartment, mopping ourselves out.

Family tensions still brew. Anxiety rampant. Its been too long. Too much. Fighting for mom. Often fighting with each other. Needing family and also being around family too much. Big decisions. Little decisions. Huge consequences. Exhaustion beyond comprehension. Curve balls left and right. Always something.

Yesterday was bad. Another familial eruption. That was it for me. I'm done. Can't offer any more. I've reached my max. I'm there. A bill that I had was taken out of one of my accounts inappropriately. Had to make phone calls to clear it up. That was like running a marathon. I'm spent. So much to do, I can't even sit and grieve! Guess I have a lifetime for that. I'm one bad occurrence from a mental breakdown.

I wrote last night in my journal what I want. I want to be away from here. I want to exist elsewhere, preferably not in the physical world. Somewhere beyond. I want to exist in a time where mom is neither died nor is dead. I want everyone I love and care about to be content, but not necessarily near me. I want to be away. No responsibilities. No obligations. Wearing no masks. Near no one asking me how i feel. No one telling me 'your mother isn't suffering anymore'. I want to be away from people. Or, if there is people- let them require nothing of me. Just be there. I want to go where I can be raw and vulnerable in the presence of all things tender. I want to just be. Not even be myself. I'm a wreck. I want to just BE.

I want life to let me be.

The Big Move

Today should complete the big move of furniture remaining in mom's apartment. It will be a relief once that is done. It has been such a big hurdle. Next, we work on selling mom's car. After that, I look forward to using my last week in town just visiting friends and family. Good things to look forward to. My brother-in-law has a fight (boxing) this coming weekend. My sis, bro-in-law, and nephew will come up to NYC for a a week. That will be nice.

I miss home (NYC), but I know I will miss here. I'm a creature of habit and fell into a exhaustive, but regular routine here. Soon, it will be time to say good-bye to that, as well.

So many goodbyes.

Weary

Today has been tiring. But, then again, every day has been tiring. So, that is a given.
Today begins one moving session. With luck, mom’s apartment will be cleared by Monday evening.
One less thing.

Taping boxes, I broke. I don’t want to do this anymore. Sifting through her things. Old things I haven’t seen since I was a kid. Little items sent from afar. Unexpected findings that meant something to her. Thousands of pictures. It’s a knife slowly pushing in, reminding me as I push through, “She is not here”. Only her relics. Torturous. I want to be done.

Yet, I don’t. The more I clean, the more I sift, it brings me closer to the end. Another ending. The ending of ‘going through her stuff’. Then there will be the ‘clean of her apartment’. Then the last look around with the closing of the door and the returning of the key. That leads to finishing up her other affairs. Then making my rounds of visits. Then a goodbye to her grave. Then, a departure. Everything is perishing around me, ending. It hurts so much.

How do you want to run from where you are and stay at the same time?

But, I believe in cycles. Everything is cyclical. So, with endings, there are beginnings. The endings now are sure, definite, no going back. But, the beginnings? They are mysterious and foreign boxes to wrapped in huge questions marks. I hope to find some solace soon. I'd settle for sleeping for three weeks straight.

A Letter To Mom

People have asked us to post the letter we wrote to mom that we read during the Eulogy. With my sister's permission, I post:

A Letter To Mom

Dear Mom,
You once told us that you believed that God knew the struggle that you were going to have with illness. So, in order for you to prepare for that path, he sent you two angels to accompany you on your journey. We love you for saying that, but we do believe in another story.
Two young girls became empowered women when they learned through their mother how to value what truly matters in this world. We are so thankful for you always being in our corner, creating opportunities for us when it seemed to others that there were none,
loving us without boundaries, and for making sacrifices for us that we will never fully know.

With that said, please know this from us:
It was an honor to clean you, comfort you, care for you, and hold your hand in times of doubt.
It was an honor to pace hospital floors, searching, praying, and fighting for you in ways you could not.
It was an honor to be at your side and hold your hand when you took your last breath.
It will always be an honor to have known you. To continue to know you as we grow.

You have inspired us to grow from girls to the women we are now. Because of our journey together, we have learned that:
We are not our bodies; they are just instruments for our use.
Many No’s will lead to Yeses.
Humor, A smile, and eternal optimism can melt the iciest of hearts.
Add cream of mushroom soup for a great crawfish etouffee.
That all things in life are transient and life’s true gift is being able to surrender to the moments, Here and Now

So, we hope you can see Mom, how we believe our story to be different.
God sent YOU to US as an angel so that we might be able to live and breathe your story.
That we let it pour into who we are and what we offer the world.
We hope to make you proud because we are so proud of you.
We rejoice that you are liberated from your body.
We know that your spirit is free. Free from confinement. Free from suffering.
Now that you are free, we would like to ask of you…

Please watch over us. Be with us.
Be with us when we take our walks.
Be with us when we have more babies.
Be with us when we love again and when we lose again.
When we face adversity and when we relish in our triumphs.
When we rest and when we are still.
Be with us Always.
And, please make the journey back to this earthly world
To come and get us
When it is Our Time.

More...

People have asked me if I will continue to write for this blog. I hadn't thought of it. The Funeral signified the end. But, perhaps, there is more. So, continue to check this blog if it so interests you. I write for myself. But, if sharing contributes more to someone else's journey...I will welcome that. Jennifer and I would like to receive everyone's address and phone numbers. We would like to send out thank you cards. Plus, it would just be nice to have family and friend information. Please feel free to email them to me at heatherkpierre@gmail.com .

Funeral Information

Thank you to all who have followed my mother’s journey. Thank you for all of the prayers, words of encouragement, and help. While Jennifer and I continue on our journey through grief, celebration, and cultivating a connection to being present, we will continue to post more.

Mom’s Funeral will be held on Friday, September 11th.

St Anthony Church
600 Madeline Avenue
Lafayette, LA 70501

The Viewing will occur at 8am.
The Rosary will begin at 9:30 am.
The Funeral will begin at 11 am.
Burial Site is at Calvary.
Reception is at Holy Rosary Gym (down the street from Calvary)

Flowers can be sent to Syrie Funeral Home. We are told that you can send flowers easily through their website, www.syriefh.com . Once at the site, look on the left hand site and click Obituaries. She is under Violet Ann Mouton Pierre. We welcome all flowers, but are particularly partial to Violet colored flowers because of moms namesake or Mom’s favorite color, Blue.

Donations can be made through Mom’s website, www.violetpierre.blogspot.com .

Mail can be sent care of Hilaria Broussard (my grandmother) at:
300 Rubria Street
Lafayette, LA 70501

Again thank you to all who continue to pray for our strength.

Newspaper Obituary

Violet Ann Pierre, age 54, died at LGMC September 5th, 2009 after a courageous and triumphant journey with illness. She was a devoted mother and a well-known vocalist. Violet’s singing skills were greatly treasured throughout the great state of Louisiana and beyond. After relocating to Louisiana in her teenage years, she traveled with siblings and her father singing second soprano at weddings, funerals, galas, parties, and more. Her voice was often referred to as “angelic”. She was daughter of famed musician Curtis Mouton and Louisiana native Hilaria Broussard. Violet was also a graduate of Holy Rosary Class of ‘73’ and studied music for two years at what is now known as the University of Louisiana at Lafayette. She was very creative and active in her children’s schools, volunteering for arts and crafts projects and fundraisers. She is survived by her mother and two daughters, Heather Pierre and Jennifer Scypion-Pierre (Wilford). Her surviving siblings include: Charles Tony Mouton, Margaret Elise Mouton, Sonja David, Curt Mouton Jr., and Jude Mouton. She also has one grandson, Wilford Scypion Jr. The viewing and funeral will be held at St. Anthony Church in Lafayette on Friday, September 11th, 2009. Services begin at 7am and the funeral will begin at 11am. Flowers can be sent to Syrie Funeral Home at www.syriefh.com . For more information, visit www.violetpierre.blogspot.com .

In honor of her a special prayers was written:
When I walk along a path and I am uncertain, I search for you.
When my heart is weary and I do not understand, I listen for you.
When I am scared and I am cloaked in doubt, I rest in you.
When I am still and silent wrapped in fields of violet, in that quiet, I know
You live in me.

Moms At Peace

Early this afternoon, Aunt Elise, Little Will, and I came to the hospital to relieve Jennifer from her night shift. I parked the car. Aunt Elise and the little one came in first. By the time I came in, Jennifer told me that mom's breathing had change. Became more rapid when she sensed people were in the room. Her eyes were open. I went to hold her hand. I read in the Hospice information that you should pay attention to all changes, even the slightest- especially the breath. When I held her hand and head to talk to her, her left eye started tearing up. Tears flowed from that one eye has I held and talked to her. We all told her how much we loved her.

While everyone sat to eat, I stayed holding her. Jenn was glad we were here to talk to her because she had a good half hour talking to mom earlier in the morning. I told her all of the things I could think that I wanted to tell. How I was so blessed to have her as a mother, how I loved her so much, how I feel honored to resemble her because she's so beautiful. I told her that I'm proud of her and that she is so strong. I wiped her tears. Told her that I saw them. Told her that I will always be her "Papaya". She used to call me that as a child. Then I got close to her and told her, "Mom, if you choose to go, we will understand. If you choose to say, we will understand that, too! We are following your lead. For the first time in your life, think of yourself and what you want. We will be fine. We love you."

After that, things change quickly. Her breathing started to even out. They became more shallow. Every inhale, I watched with passion. Waiting. I felt her last breath could come. When the breaths became fewer and farther between, I became anxious. I called Jennifer. As soon as Jennifer touched the bed, Mom took her last breath. The Three Musketeers. That's what she used to call us. We were all together.

We told the little one that MuMa's an angel now. He says, "But, she don't have her wings." We told him that she gets them later.

This Morning

Written This Morning

“I want MuMa to wake up. I want MuMa to feel better.”
This is what my nephew tells me this morning as we enter Mom’s apartment so that I could dry some clothes. I want that, too. With the state of mom, Jenn and I have learned to not dare to0 much investment in the future. We don’t know what will happen two days from now, lest 2 hours. Staying in the moment is helping us to stay grounded. However, every now and then, when little Will refers to mom, Jennifer and I share this knowing feeling. This is a feeling of dread. How will we tell him? I have my own moments where I’m overwhelmed with the rush of reality. This usually happens as soon as I open my eyes upon waking. “Mom is dying” is the first thought that greets me when I open my eyes. You are supposed to get much rest and take care of yourself when you are taking care of someone else. But, I can’t help but find myself procrastinating going to sleep to avoid opening my eyes later to this same reality.
Today, mom’s sister will sit with her during the day. We’ve fallen into rhythms. Patterns that find us as we adjust to new circumstances. Now, our days consists alternating nights sleeping in mom’s room and spending the morning with her. Mom’s sister (Elise) sits with mom during the day. The other daughter takes over the next night. The room is small. It takes a kind of grace to maneuver in such close quarters. But, then again, everything about this journey takes a little grace.
While Aunt Elise sits with mom today, Jenn and I will take the little one to a birthday party today. It’s at a bowling alley. Will deserves some fun. Some colorful distraction. Much needed.

Hospice

Hospice has officially signed on. And, here is what we can share with you.

Mom will remain in room 533. We could not get the bigger room on the Oncology floor due to infection risks. She will be receiving more pain medicine.

It looks like Jenn and I are moving in the direction of removing all medications except the pain medicine. This includes nutrition. We received a wealth of material today that we have to read. It is educating us about what we may expect and soothing some fears about some reservations that we had. We have been very hesitant to remove nutrition because it felt like we would be 'starving' mom. But, we are learning as we read and speak with Hospice that "food holds tremendous emotional, social and cultural significance in our lives". And, especially being southern girls we feared the impact of depriving a loved one of food (comfort). We are learning that supplying nutrition now may be counterproductive. Our bodies digest food using various organs and the process may become complicated when everything is not functionally properly anyway. Often times, at this stage, a person is not 'hungry' nor 'thirsty'. Also, we must follow the lead of mom. Whatever she needs, we provide. Whatever she does not want, we eliminate.

There's much more we have to encounter. And, we try to do this with grace. We have much to read and more to discuss. But, we are hanging in there. Surrendering. Being Present. With love.

Morning Comes

Its 9am. Mom is still here and resting. Her night went pretty smooth. We could agree that the pain pump is assisting her comfort greatly. Jenn and I meet with the Hospice folk in a half hour. We will learn more about aiding our mom's comfort.

Steps Closer

Mom has what is called ‘weeping wounds’. Because of the fluids in her body, she will leak from any wound. She has been positive for VRE and Pseudomonas (types of infections). She may have MRSA, but we are not certain. If you should visit, please make sure you use the blue gloves and wash your hands before and after you put them on. Do this even if you do not touch her.


We have a meeting with Hospice tomorrow morning. The purpose- to introduce us to options we have not encountered. It is counterproductive to have more on antibiotics when there is a stop order for baths. They can offer us a halt to all things intrusive. The stop of vital signs regularly, lest that irritate her rest. They can potentially deaden areas of her body so she feels no pain if we need to do a gentle wipe for her body. Because the chronic team places the patients comfort first, they recommend the halt of antibiotics and follow the lead of the patient. For that, I have unending respect and adoration for these people in this profession. Tomorrow , we will discuss more. If we make it till tomorrow….

She is more lucid today. She spoke to her sister and told her that she was dying. She said she saw the Lord. Also, she said that she saw her father and he told her that he is coming to get her tonight. She also says that she is not afraid. We rejoice in this news. We want her to be out of suffering. We want her to be at peace. And, the bonus factor of her fearlessness- that is a blessing so wonderful that it is hard to put into words. For now, it can only be rejoiced in the heart.

Pain Pump

Mom will receive a pain pump. It can be pressed every 6 minutes. Every hour she can get a new wave of pain medicine. Hopefully, this steady stream of pain relief will grant her much physical peace. Mom will remain in the bed she has now. We were told it might better serve her needs. We are fine with that. The thought of her bed transfer gave us some anxiety. As long as she rests peacefully, we are content.

Just now, I gave her some 'ice chips', tiny cubed crushed ice. She was very grateful and said 'Thank you' over and over again. Jennifer will spend the night.

Thanks to Cousin Belinda and Stage. Thank you Mrs. Flugence for your constant support, near or away. Also, special thanks to Father Arceneaux for coming and praying with us all. Much gratitude to Michele from Hospice for her diligence and compassion.

Rough Night

Mom had a rough night. Around 10pm, she was transferred into a air pressurized bed. She was fearful of the transition and crying with anxiety. Once moved, she had some rest for about a half hour. However, that was how her rest continued for most of the night. At most, she would have half hours of rest. But, then they were followed by pain, moans, and often incessant "Oh God" laments. Sometimes, I would put my hand over hers and try to talk encouragingly to her. A couple of times that helped and she fell back asleep. Sometimes I would pray. Sometimes I would just lay and in my mind, yell at God. At one point, I went to adjust her bed. The area where her legs were seemed deflated and the nurse had showed me how to adjust the machine. I hit the wrong button and it turned the whole bed off. Then Mom was in more pain saying that it was from the bed. I rushed to have the nurse come. She came with someone and with a push of a few buttons they restarted the bed. That bought another half hour of relief. I had to call the nurses station twice just for them to change IVs due to the incessant beeping. The nurse was great in coming faithfully every 2 hours on the dot to provide pain medicine.

I don't know how anyone truly rests at hospitals with pages happening so often, constant beeping, people busting into the room loudly and throwing the light switches on. At 7:45, a physical therapist came in to move mom while she rested. I sat up and looked at him and said, "She is not receiving PT, we are doing everything we can so that she is comfortable." He gave me a look of understanding and said that he would go check her chart.

Shortly after that, change of shift time occurred and nurses came to change moms sheets- a grueling and painful process. She also used the bathroom so they had to clean her. Fortunately, my sister came in around that time to relieve me from my post and was able to aid the transition. Exerted by the pain, once covered and clean, mom started to rest.

A nice woman (who we have met before) came to visit us from Hospice and Palliative Care. Her purpose is to ensure moms comfort. She is considering giving mom a pain pump that she can press at her leisure every 6 minutes. It maxes out during the hour, but resumes its new level at the new hour. Her concern was that moms new bed may be causing her more pain. They are working on seeing if they can score her one of the ICU beds. ICU owns their particular beds and they are just for ICU. So, if we were able to score one or one like theirs- that would be its own blessing. The wound care people came at the request of the Hospice woman. They wanted to gauge the level of her wound so that they can make an assessment as to how to alleviate its pain. We were told they may be able to deaden the area. But, she has been resting so well, we didn't want her to be disturbed yet again. I think the wound care duo felt this concern and did not push turning her over to see it. Fortunately, we have chronicled moms journey with pictures and Jenn had the most recent bedsore picture taken a few days ago in her phone. We sit now and wait to see the status of the bed, the plan for pain medication, and the action plan for the wound.

She Rests For Now

Mom is in room 533 on the fifth floor. Should you visit, be sure to wear the protective blue gown and blue gloves to ward off spreading or receiving bacteria.

She rests now. I will stay the night. She had several visitors this evening. She wants people around her. She was upset when she was alone earlier this afternoon. So, Jenn and I will take shifts so that there is no laps of time where she is alone. We welcome visitors. She speaks and is responsive though not every thing she says is sensible. But, she is very aware of people in the room. So, feel free to come and tell her how much she means to you.

At this moment, I am writing from the pullout bed next to mom's hospital bed. It is surprisingly large and comfortable, this little surprise- a mini blessing. Besides my laptop, the glow from the bathroom door provides the only light. Soothing jazz melodies play amidst ocean waves from a cd we have playing in the background. Mom's breaths are even. Though I do not know what tomorrow morning brings or the next hour even, I am very content to be here. In fact, there is no other place on Earth I'd rather be now.

Though I am still, I can't promise that tonight there will not be tears shed on the pillow that was brought from my grandmother's house. I am learning to allow myself the right to truly feel whatever it is that I feel in the moment. And, I continue to offer up all those things that I feel that are rooted in fear and hand them over to a Higher power, in hopes that those offerings eases my mother's journey.

Today Begets Another Journey

Yesterday evening, my sister had a change of heart. Mom's blood pressure dropped as expected when she was taken off her meds. We waited. We were told that once the drugs reached their half life, she might fade quickly. We sat next to her and held her hands. One of us on each side. And, we waited. And, it was painful. ICU let us break the rules and stay there all day. But, then she opened her eyes and began talking. Mostly incoherent mumble. We had sung songs to her while she rested, one of them "Raindrops keep falling on my head...". She came to and asked for raindrops. She wanted them on her head. She cried alot. Sounded confused. Her speaking and being responsive is an unusual with her blood pressure that low. Even the nurses found it peculiar. But, that has always been Mom. Defying odds. Jennifer felt strongly that it was a sign to resume her medications. For without the medications, it meant sure imminent death. Her organs would begin to fail. With the medications, she at least stood a fighting chance. And, though we had agreed earlier in the day to aid her decline, mom's speaking became a gift- and to Jennifer- a sign. I deferred to Jennifer to make the call. I was against resuming her meds. Even if she were to pull through, I asked myself, "At what cost? What would be her quality of life?" These were concerns for Jennifer, as well, but she felt that at least if mom passed, it was not due to us depriving her of a stepping stone. And, Jennifer wanted to be heard. So, I listened to her. And, I deferred the call to her- mostly for her. And, I thought, "I have no problem eating humble pie and being wrong if this turns out differently then expected." So, mom's medications resumed.

Mom pulled through the night. Her pressure is higher, though nowhere near stable. I slept in later, heavy. I opted to go to the 1pm visit rather than the morning. Jennifer went to the 9am. She spoke with Doctor Del Toro. Without the meds, he said she would die 100%. With meds, she is 80% certain to die. It just may take days rather than hours. Jenn thanked him for his diligence. He said he imagined mom as if she were his mother and what he would want to do if that were the case. To mom's sheer delight he wrote a prescription for 'no more baths'. These have been painful experiences, hellish experiences she would dread twice daily. He also asked her if she needed anything else. She wanted ice chips. He said that was fine. "Anything you want". She will be moved to a regular room where visiting can commence anytime and for however long. Mom's grandchild will be able to see her. We are trying to make her as supremely comfortable as possible. She will continue to be on antibiotics, and pain medicine. However, the blood pressure medications have been stopped.

It was emotional, but we found out that she will be allowed to have food (instead of just the tube) and asked mom what she wanted to eat. Nothing is off limits. It was excruciatingly real and painful to know that you and your sister are planning your mother's last meals. On some levels, we feel certain that mom knows that she won't leave the hospital- even amidst her confusion. Oh, by the way, mom desires Popeyes Fried Chicken. We will get her some mashed potatoes and rice dressing on the side. And, she will be able to enjoy a much coveted soda. That is our plan.

We will post what her new room number will be. Come at your leisure. And, we continue to welcome good energy, prayers, and support.

A Drastic Turn

I received a phone call around 10 in the morning from the hospital. Moms blood pressure dived down around 2am. The doctor told me he doesnt think she will make it. We arrived having to decide whether or not to halt treatment. Jenn and I prayed and talked. We have decided to stop treatment. Test results confirm moms infection is in her blood now. While shes had blood infections in the blood before, this time we do not feel optimistic. And, being that our optimistic doctor does not feel confident, we felt it was time to decide the most difficult. We are told that it is likely that her organs have and will continue to shut down. Now we sit and pray and ask for Grace.

The Road Ahead

With luck, mom may be transferred to a regular room tomorrow. We are still awaiting her infection test results. We are also hoping to speak to the doctor about getting her a psych consult so that she could resume her bipolar medication. She was removed from any medications that would lower her already unstable blood pressure. Now that she is stable, we hope that she could resume her meds. The past two days have shown her to be meek and childlike. Today she was trusting of no one, though she did not want Jennifer nor I to leave and was startled whenever we moved about the room. I think she feared us leaving. She also feared pain in anticipation of an act, like cleaning her wound or turning over. We arrived when her nurse was getting ready to clean her wound. She cried. She cried mostly in anticipation of pain. It became a task just to provide her distraction. She lamented, "Why is this happening to me?", and "When is this going to be over?", and "I'm so tired". How could we disagree. We just gave her words of encouragement, telling her that she was doing well, that she was strong. For those bigger questions, we have no answers. Why does one have to suffer so much? When will the pain release? We don't know. The 'not knowing' is where most of the fear resides. When asked where her pain level was on a score of 1-10, she said 10. We suspect its much lower as she could move her hands, turn over herself, and was not sensitive to our touch as much. However, her psychological pain might very well be a 20. And, psychological pain can greatly enhance the physical. I often think of her recovery process as having some level of post traumatic disorder. How could it not? In most things, the more you go through something- the easier it becomes. I don't believe this applies to chronic illness and pain.

Also disheartening was to see her bedsore. Its surrounded by black. That eventually HAS to undergo debridement (the process of removing dead skin and tissue). It was inferred that this could have been preventable. More on that later.

But, because there will be more on that later, it poses the question of "How much?". How much does one take? How much doses the caregiver take? Its utterly exhausting and seems a never ending uphill climb. We are doing our best to live in the moment, but that doesn't make the present moment less exhausting if the present moment presents utter feeling of exhaustion.
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Off Most Medications

Mom is off all of blood pressure medications and antibiotics. Blood cultures done tomorrow will reveal this weekend the status of her infection. She still has a feeding tube that goes straight to her stomach. It provides nutrition. She is more alert and delighted with visitors. Please be sure to wear the blue plastic gloves available when you visit. There is a special blue gown available if you want to get closer in her personal space. Make sure to use the antibacteria liquid on the walls before you enter and wash your hands when you leave. Her immune system is weak and washing hands helps alot. She has lost time and is not sure of the chronological order of events. We are telling her the most recent information, but not overloading her. Thanks to all of the visitors who catch the shifts we are not able to be at. Dr. Del Toro tells us he is keeing her in ICU till Monday. After that, she may get to be moved to a regular room. At that point, visiting hours will be more flexible.

Again, visiting hours are 9am, 1pm, 5pm, and 9pm. The hospital is Lafayette General. ICU is on the 7th floor and she is on the south side in room 15.

Moms Progression

Written Yesterday Evening


Mom was more responsive today. We visited at the 1pm and the 5pm visiting hours. Jennifer played her Will’s message (that’s her grandson) and she smiled. She said she was tired of hospitals. I could only agree and say that “I understand”. She feared her bath. Bathing and wound cleansing is very painful for her. But, we were happy to see her not in much pain outside of those circumstances. She let us clean her mouth, tongue, ears, and face. In fact, she urged us too. She’s lost some time. She wasn’t sure which hospital she was in and what had happened. That’s understandable. We told her a few key things about her blood pressure, kidneys, and skin. But, we left out a lot of the particulars. Figured not too overwhelm her with so much news. Give her just enough to comprehend the extra care and attention.
We are taking everything moment to moment. It’s a challenge. In fact, just now we got a call from family visiting at the 9pm that mom is asking for us. That makes me kind of ‘achey’. I want to rush over there now. But, we are exhausted. And, by the time we get there, the visiting time will be over and we would not be permitted to go in. Going to all four visits a day have been taking a physical and emotion toll. Jenn and I gave ourselves permission to visit twice a day instead of four. Yet, there is this angst I am feeling for not being there. The roles are reversed. I feel like a mother to her and I want to keep reassuring that she is safe and loved. She sounded so meek, like a child. I’m so joyful that she is alert. Now, I just want to shield her from all that would hurt her. And, I know that I must do all that I can do and surrender the rest. It’s a challenge. Moment to moment.

Striving For Clarity

We've met with the current dermatologist. He is still vehement and adamant with his position last Friday. He expresses the risks. They are still the same. He's explained how the drug works. It still makes us anxious. He answered our questions. The answers are what we mostly suspected.

Here's the Catch 22. Mom already has a compromised immune system. The drug, while it can pose miraculous results, SUPPRESSES the immune system further. If we were to try the drug, it would be best for mom to be in the hospital, PREFERABLE ICU, due to the MONITORING that she would benefit from. Moved to a room on the floor, she would not get the same quality monitoring. On the flip side, if she moves to a room on the floor that means she is getting BETTER, thus strengthening perhaps, her immune system with antibiotic treatments and more. But, she would not be near the intense monitoring of the ICU.

ARGHhhhh!
Do you see what we have to consider?

As of now, we are considering nothing. We are acquiring information and letting it wash over us. We feel confident that we would not ok the administering of the drug at this point, based off the expertise of moms past Tulane dermatologist. He was not confident to administer it while infection is still in her urine.

Here are the tiers with the doctors concerning the administering of the drug:

Infection in the Blood : Absolute NO to the drug (both doctors)
Infection in the Urine : Tulane Dermatologist-NO Present Dermatologist- Hesitant
Infection in the Wound : Both would still treat her with the wound

Also, here are the tiers of effectiveness with the current psoriasis drugs:

IV Remicade (most risky, most dramatic results, shortest time frame, immune suppressant)
Humira (less risky, could provide great results, immune suppressant)
Embrel (the least effective of the three, mom has tried this one in the past without
significant and long-lasting results)



As I have mentioned, we are letting the information wash over us, helping us to become better informed with the hopes that it helps us make sound decisions. A great person and friend sent an empowering mantra via text days ago that read:

"I am a strong woman and I make sound decisions."

We will rest in that for now.

More Information

This morning we were able to speak with mom's former dermatologist. He was very helpful in giving us insight. He understands mom's risks for infections as that had been one of his many challenges. He advised us to consider the drug, emphasizing that it is the BEST drug out there for psoriasis, BUT only if the infection doctor can get a grip on her infection. The previous dermatologist advises AGAINST the shot, if Pseudomonas, is still in her urine. Last we heard, the bacteria, was in her wound and urine. If the bacteria could stay contained in the wound, the previous dermatologist would recommend giving the drug a try. Apparently, the wound may be able to be managed then. But, he repeated that the drug is the best there is for her condition. Those are the main highlights from our conversation.

Meanwhile, Jenn and I, are waiting for our noon appointment with the current dermatologist. We are preparing questions and hoping for more insight. As of now, we definitely want to create a dialogue with the Infection doctor. We respect the previous dermatologist's advice and will take all said under consideration.

More later...

A Joyous Moment Amidst Decisions

Mom's doctor urges us to consider the IV Remicade. We expressed our concerns, yet he feels that without taking the chance with the drug, mom will continue to deteriorate.
He urged the nurse to make an appointment with the dermatologist for today so that we could ask our straight questions. We were able to score a meeting for tomorrow around noon. Questions we will ask include: "What kind of quality of life would mom have if the drug works?", "What manner of death will happen for her if it doesn't work?" Underlying everything, Jennifer and I want mom to be comfortable. At ease. As pain free as possible. Whether we are allowing her to pass....or whether we entertain the thought of this 'wonder' drug. Jennifer and I spent much time researching the drug in the past 24 hours. It bothers us. We don't like that mom meets much of the criteria for NOT having the drug (infection prone, diabetes, etc.) Reviews from those who have taken the drug are all over the place. Some people claim its been there miracle drug and they are living life free from ailment. Others say it worked for a year and then it stopped. Some say it caused even more complications. And, all of these people, were not in such dire straits as mom's current status. However, if the drug works, she could experience (on average) a 50% reduction in symptoms. There are still so many questions. We have not made any final decisions. We have found through research the contact information of moms trusted dermatologist of the past, Dr. Russo. Katrina displaced him and we have searched for him today. Tomorrow morning we may make contact. He knows moms past and worked diligently to help her with her battles with psoriasis. In fact, he introduced us to multiple therapies, some lasting and highly therapeutic. We would greatly value his expertise and opinions. So, we hope to speak with him.

Meanwhile, a CT scan was ordered for her. This was to observe brain activity. Mom has only been responsive to pain. This has been so for days. However, today when I leaned into her and talked a bit more loudly- there was movement in her less than half-lidded eyes. She turned them towards me. When Jennifer spoke at her other side, her eyes moved towards her. Emotion overtook us. We called the nurse in. Dr. Del Toro rushed in, as well. We asked her questions. She moved her head. When asked if she was in pain, she moved her head 'no'. Later, I told her that Jenn and I are doing everything we can for her, asking all of the questions, and making sure she is comfortable- then I asked her, "Do you trust us?" She then nodded her head 'yes'.
It was a beautiful moment. Soon it followed another beautiful moment when we had to leave and kissed her and she lifted her arms high for a hug. And, we gave her one and told her we would be back at the next visiting hour. She smiled. And, that's where we are. Its 10 minutes to 9pm and we are waiting to go in again. We hope to experience the joy of seeing her and seeing her see us.

Curves Every Which Way

We are at a crux. Today, Mom's doctor advised us to consider and experimental treatment. We were approached with this new medication on Friday by the dermatologist. Friday was such a difficult day because we were approached with this potential 'miracle' drug in conjunction to meeting with Hospice and Palliative Care. For reasons we felt confident on Friday, we opted to NOT try the miracle drug. Risks were too dire, as well as the potential kind of death that could occur if all went wrong.
So, we have moved forward...but now...

Our optimistic doctor, whose opinions we value, asked us to reconsider. The drug is called IV Remicade. It would be administered for Mom's severe psoriasis. We have never heard of it and are doing research on it at this moment. We were told that the average patient who takes this drug can see a 50% change in their skin. With mom having psoriasis 95% of her body, this would be a huge difference and would aid in lessening yet another complication. But, we were told that if the drug were to have a positive effect, it might make the other doctors (kidney, infection, etc) jobs more challenging. Also, mom has numerous risks that are not in her favor for a drug like this. Yet, they said she is in the best place to administer the drug rather than trying it outpatient. Also, it is an extreme drug that may present the most extreme results in the shortest period of time.

The reasons we declined the treatment Friday is because Hospice gave mom a 25% chance of making it through the weekend. We wanted her to be as comfortable as possible and found it not the time for experiments or 'heroic acts' as the doctor termed it. And, though she is still critical, she is also HERE. She has exceeded expectations and this wouldn't be the first time. We are being urged to reconsider and we are unsure. We have much information to read over tonight. We also have to discuss amongst each other. We have to be on the same page.

We shall see.

For Cards...

We have been asked for a street address so that people can mail cards and/or donations.
For those interested, we are using our grandmother's address:

Hilaria Broussard
300 Rubria Street
Lafayette, LA 70501

Also, please email me your phone numbers and addresses if you know that I do not have them. I am also on Facebook for those that want to contact through that site. I will try to contact you as soon as I am able.

heatherkpierre@gmail.com
(917)858-9787


Thanks to all for the support.

Still In The Moment

Mom is still resting deeply. We were told today that she is still being lowered gradually from her blood pressure medicine. So, she is doing most of the blood pressure work on her own. That is good. Her infection is still contained to the urine and wound, not exposed to the blood. Jenn and I will try to talk to the dermatologist today. Hopefully, we will catch the great Dr. Del Toro today when he makes his rounds.

Hospice gave us the terrifying 25% weekend prediction. So far, Mom has exceeded expectations. Though she is still considered critical, we know that she is strong and a fighter. Not too mention, she is surrounded by all of your powerful prayers. We believe strongly in the power of prayer and we are all enveloped by it.


Special thanks cousin Roz and Renee for their visit. Your bright energy was infectious. Thanks to Cousin Benita, Aunt Beverly, and Little Megan for your visit. We are so grateful. Thanks to the Queen of Peace prayer group for visiting and praying. Dr. Hendry- you mean more to us than you know. We value your experience, wisdom, and support.

Mostly The Same News

Mom still rests. Her kidneys have shown a slight improvement. She is being weaned off her blood pressure medicine. Her infection remains confined to her wound and urine, not her blood. Everything is moment to moment.

A Little Update

We have learned that mom is on a medicine to help stimulate urine flow as a way to help her kidneys work. Tests confirm no blood infection though her body is septic. This may mean that her infection may be confined to her urine and bedsore. The nurse says the wound itself could use some deep cleansing. Her blood pressure fluctuates, but their are good numbers in there. She is resting very peacefully now. She seems to be out of pain.

We Know Its Hard

We are very aware that visiting at this stage can be daunting. We embrace visitation, but know that we understand if you cannot. Follow your instincts and know that we understand if it may be too difficult for you. Thanks to all who continue to pour in.

Our Prayers To Others

Frequenting ICUs has brought us to encounter many other families going through their own struggles. We send out prayers to them, as well, for we are all connected. We pray for the young woman with the head scarf. She came in one night with alot of people, but we've seen her by herself in the waiting room nearly every visit. We pray for the man in the elevator who was coming to visit both his wife and daughter in critical condition. We pray for friends of our mother who we ran into here. Their mother is in our thoughts. We pray for a high school friend of mine who works here. She lost her brother in the spring. God heal her family. We pray for all of the families that we have encountered here. We all give each other knowing and pathetic glances as we wait for the huge doors to swing open and reveal our fates for the day.

Through the Night Update

We are living moment to moment. Moms blood pressure remains inconsistent but stayed near the 100s (top number) most of the night. That was unexpected. Her kidneys are providing output but not filtering well. We are doing our best to "walk the line". We want to remail hopeful, but we want to gather our reserve. Faith, strength, and surrender are where we are seeking salvation. Please keep the prayers coming.

Lafayette Generals ICU Visiting Hours

ICU Visiting Hours are as follows: 9am 1pm 5pm 9pm. Visits are for a half hour. Take the elevator to the seventh floor. Mom is in room 15 of the South ICU. When entering ICU, take advantage of the antibacterial soap on the walls throughout the unit. When entering the room, look to your right, and put on the blue plastic gloves. When leaving, please use the sink inside the room to wash your hands. She is sensitive to the touch so avoid touching her. But, warm words and prayers to her are welcome.

Yea Though I Walk In The Valley

Jennifer and I have had to make impossible decisions in the last 24 hours. Moms kidneys have failed. They give her a 25 percent chance of surviving this weekend. This is the time to visit if you have the need. My sister and I have decided, with the aid of hospice, to provide the most comfort to mom right now. She will get more pain medicine, though it will likely aid her decline. We have agreed to a DNR which is a Do Not Resuscitate order. We cant bear for her to be in pain any longer. Thanks to all that continue to provide love, comfort, and support.

Much Much Gratitude

Special Thanks
It has been extremely wonderful to have the support of family and friends. Jennifer and I go into waves of exhaustion, crying, hope, and hysterical laughter. We are always warmed by a card left, a thought posted, or a prayer said. Please continue to do so, it is very warming.

Thanks to Alison for offering us a care package. The mere offer had me tear up. And, thank you Aron and Sara for your prayer. I believe God has children's prayers on speed dial.

Also, special thanks to nurse practioner, Deidre. Whether delivering bleak or hopeful news, a person can't know how significant the tone of delivery can be to loved one's spirit.

I have to thank Alisha, Linda, and Waleska for their availability to take my calls at random times. Thank you for listening and being there. Your friendships are invaluable. Thanks Alisha for your fantastic ears and direct line to the man upstairs. Its good to know a person like you. Thanks Linda for your fine pair of ears as well. And, sometimes cracking jokes about The Real Housewives of Atlanta is just what I need. Thanks Waleska for your enduring optimism. Its always infectious.

Special Thanks, as well, to The Family Church who have been praying around the clock for mom's recovery and for the mini-team that will attend todays 5pm ICU visit.

Thanks to Aunt Camella for hosting a wonderful gathering last Sunday. The food was comforting and the company enriching. Thanks to Cousin Tonette for leading the birthday gathering for my nephew. Thanks to Cousin Stacy and Josh for the barbecue. Thanks, S for the movie company and occasional bad movie bashing.

Thanks to Brad for offering to fix my bed so that it is ready for me when I return.

Special thanks to Aunt Gerri and family for my nephews gift and the financial contribution towards mom.

Thank you to all for the Facebook comments and personal texts.

Even with our present challenges, we are very aware of how blessed we are.

If You Offer Help, We Are Open To Accept

Mom's immediate crises has been ongoing for about a month. Her health challenges have been ongoing for over 10 years. People have been kind enough to inquire my sister and I how we are doing. We've been so raw and exhausted that we have being completely honest: We are drained.

Somehow we find strength to move forward, to take time to write this blog, to gather all of the information from doctors and medical staff, to stay abreast of new treatments and to remember old ones, to make sure mom's bills get paid, and life continues. We sleep when we can, we see a movie when we can, we eat whatever convenient. We have been challenged physically, mentally, spiritually, financially and more. Many of you have offered help. We are now officially saying, thanks so much, we will take you up on it!

If you are available to offer help, we welcome it and here are ways we could use it.


Babysitting
If you have met my nephew, Will, you know that he is a handful and a bundle of sunshine. It gave Jennifer and I great pleasure to seem him enjoying himself last Sunday with his cousins. (The special birthday cake and gifts was a wonderful bonus-thanks so much) In the midst of crises, little children get shuffled to the side and we don't deny that he's little and has needs to. But, we are limited as to the quantity of quality of time that we can give him. So, if you are able to take him to the park or watch him while he watches a movie, please let us know.

Gas Card
My sister and I visit the hospital every day, sometimes more than once. We go, as needed. We also chauffeur relatives who do not have a vehicle. If you are able to donate a gas card to my sis, that would be very helpful.

One Way Ticket Back to NYC
Since I've been in Louisiana, I have changed my flight 3 times pending mom's condition. This week it appears I will have to cancel my flight, yet again. I was scheduled to depart back to NYC next week. I am considering waiting to book my flight when I can feel confident enough to leave the very next day or the day after that. I plan to call Jetblue and explain this situation with the hopes that they may alleviate this next change of flight charge. A good friend suggested that it doesn't hurt to ask!

These are our immediate needs and concerns. We are grateful for whatever we receive.

More News

We were fortunate enough to speak to Dr. Del Toro during our second ICU visit session around 1:30pm. He informed us that she is showing slight kidney improvement. Her blood pressure and infection are the main concerns. CT results and tests show that her heart is strong and may be a key factor in aiding her this far. Her skin is super sensitive to the touch and she has been removed from the pain patch. She will begin Ultram (a pain reliever)and that one takes time to be in your system. She also severely dehydrated.

Yesterday was horrifying. We learned from LTAC professionals that she underwent whirpool therapy. This required her to be moved from bed to wheelchair to whirlpool seat, through warm bubbling water, while her skin is raw, and back into a chair to stay sitting. According to them, she became unresponsive in her seat. They called paramedics and ushered her to her room where they attempted a central line. They said she was responsive by the time she left. We can't deny that we were livid upon hearing these things. Just the day before, mom requested that Jennifer, Elise, and I give her a bath. She screamed in pain when we squeezed water from the towel onto her skin. That is how sensitive she was. In fact, the bath was so painful for us to do that my sister couldn't finish it and had to leave the room. It ached us to see our mother so sensitive. For the reports made to us saying that she was 'fine' with whirlpool, that she even 'watched tv' in the bath without complaint, and even hearing the implication that she would be more expressive with her pain with us were infuriating, to say the least. Mom's whirlpool bath this past Saturday was so painful that she requested to me in front guests that she not receive whirlpool again. It burned her, she complained. I made a request to the nurses station that they hold off on it, because she was so raw and sensitive. Though I know at some point we would have to revisit the whirlpool option, my sister and I were concerned that she was too fragile for it just yet. After requesting this, I was informed that she would only receive whirlpool once a week. This relieved me because I figured it bought mom some time for her skin to improve.

Also, we had concerns about her frailty due to the fact that she was absent without a central line since Saturday, as well. She had no formal nutrients, IVs, or fluids. She was barely eating or drinking and complaining of thirst. When my sister and I were there, we encouraged her to drink and eat. But, we feared the other 21 hours of the day. At one point, since Saturday, we were encouraged by an LTAC nurse to bring our mom anything, so long as she drinks and eats it. She was severely dehydrated. All of these challenges have had us question why she was pushed to undergo a therapy that would potentially exhaust her and cause her excruciating pain. A source reassured us that the events in the past 24 hours are being looked into.

So, things right now are precarious. Mom will have a minimum of a few days in the ICU. Most likely, she will be transferred to a room at General for recovery before considering the next step in wound care.

Stay posted for details.

Here Are The Facts

Here are the facts. Mom will be transferred into ICU as soon as a room becomes available. Her blood pressure is low and inconsistent. She is in out of awareness.

Today Proves Problematic

This morning my sister and I received a phone call that Mom was in respiratory distress and that it happened during physical therapy. We rushed over and learned that she had just underwent whirlpool therpy, was sitting in view of the nursea station, and went unconscious. She has been rushed to Lafayette General. Her blood pressure is dangerously low. This could be due to dehydration and lack of fluids. Shes been without formal nutrients through an IV since Saturday. We are headed to the hospital now and will post an update as soon as we can.

Feeling Low

Today we learned that moms kidnwys are showing signs of improvement. Blood test results will determine how soon she will have her central line surgery. Hopefully, it will happen within 24 hours. They highly encourage her to eat because she is not getting an IV of nutrients. She drank yogurt drinks with us. She also had a Glucerna. Her white blood cell count is lower (a good thing), but she does have a low grade temperature. The head nurse took time to provide us with detailed information for which we are thankful. Moms skin is so sensitive to the touch that giving her a bath today was nearly unbearable. She requested Jenn, Elise, and I to do it. It was too much. It was grueling, painful for all, and not very successful. These kinds of situatuons make this process seem unfathomable. Not too mention that it extremely drains ones energy. It can become exhaustive to maintain optimism. So, even with promising news todays collective spirit feels less than promising. You want to be angry at someone and theres no one to blame. Thats where we are in this moment. In this moment, that is our truth.

We Welcome Visitors

Mom is talking. She could use great energy and warm optimism. Visits with family this weekend have proved wonderful. So, we welcome visitors. The last update provides information about the facility where she is located. She still has to have surgery, most likely on Monday. That would happen at Lourdes. Thanks to all of the warm visitors with the sincerest of intentions.

Shes More Conscious

Regarding great news, mom called her Elise this morning. That means she was coherent enough to remember her sisters number and call. She is talking and aware. This is a great time to visit. LTAC of Louisiana is located on the Youngsville highway. It is right past thw Kart Ranch. Drive on Pinhook towards Broussard. Stay in the right lane and veer right on the curve when you reach the intersection with the CVS and Piggly Wiggly Shopping Center. LTAC will be on your right hand side. Moms room nunber is 17. The phone nunber is 337-839-9880. In medical news, mom is still considered to be in acute kidney failure. She pulled her Central Line out in a confused frenzy. She will have to undergo another surgery to replace it. That will most likely occur on Monday at Lourdes, if not before. Please call before visiting to ensure that she is here. Special thanks to Uncle Tony for making the trip and for treating us to a wonderful breakfast.

What we know, location may change

Yesterday was rough. Mom was in the most pain we have seen her in. Her skin was like paper and had similar sensitivity to a burnt victim. The doctor told us that his main concern is her kidney function. If conditions do not improve, she may have to be transferred back to Lourdes Hospital. Today we await further news. She looks better today, less swollen and fragile. Her urine looks clearer. She has some awareness, making eye contact and hearing our conversations. As soon as we know if she stays or if she goes, we will post info on her location. We feel its time to reopen visitation.

Donations

My sister and I have set up a donation option for our mother. Donations aid us towards longer term goals for her benefit. These include purchasing a special mattress topper that is produces pressurized air for the prevention and healing of bedsores. Other financial goals include purchasing health supplies that will aid her quality of life. The donation button on the top right of this blog is linked to my PayPal account. Any contribution matters, whether its $5 or $50. As we are able to purchase items, we plan to post where they are going and how they are enhancing her life. Thanks to all who have asked how they can contribute. We are very thankful for your help.

Another Surgery

Today we learned that mom has gall stones in the gall bladder. It looks like the gall bladder will have to be removed. One kidney has a stone and the other kidney has a cyst. She is considered to have acute kidney failure. Moms blood levels (INR) are thin which makes a bad candidate for surgery at the moment. When she can have the surgery, they plan to also do a wound debriefment (removal of dead tissue) for her bedsore. But, her blood needs to be thicker to undergo all of this. Her physical therapy injury is still bleeding slightly which says much about her thin blood levels. We should know more significant information in the next 48 hours. Please continue to pray for healing.

Pray For Healthy Strong Kidneys

Speaking with moms doctor, we have learned that there is concern about moms kidney functioning. We had heard that she was losing lots of protein in her urine, a sign of kidney distress. She is on fluids right now. We should know more about whether or not this treatment aids progression of her kidneys health. Our doctor speaks in humorous and optimistic tones which is helpful. However, learning of new dilemmas each day and sometimes more than once a day proves exhausting. Her physical therapy injury is still bleeding slightly, still healing. She rests much when we visit, but seems more and more like herelf in subtle ways. She also is capable of more movement and appears to experience less pain. So, there are good signs, promising signs. Still, we need all of your prayers and good energy. Keep it coming.

Challenges Continue

My sister and I discovered mom with a bleeding injury underneath her right arm. Her physical therapists grabbed her underneath her arms to prevent her from falling. Her knees buckled under her after they attempted to have her stand. Moms skin is super sensitive and we feel the staff underestimates this. What made the situation worse is that we were told that she was left bleeding after PT noticed and reported the cut. Her bathing aid was the one who dressed the cut. This among other things had us speak to the director of nurses. We spoke to him of the neglect in basic care services. We even provided pictures. He assured us that we were valid in our right for proper care and urged us to report any mistreatment to him. These are not the things we should have to be concerned about. It is infuriating. Now we are concerned about these new lesions. Hopefully, our report will lead to ensuring that our mother receives
at the very least, basic, humane, compassionate care.

Things are promising.

We are visiting Mom right now. She is complaining of chest pains. We have been reassured that it is not likely to be cardiac related. That is good to hear. Still, she has undergone an EKG. The results were good. She will also undergo another X-Ray to look closely at her ribs to make sure there is not a fracture that previous X-Rays may have missed. She is more coherent, but has no appetite. She did drink a strawberry Glucerna with us. All in all, she is looking better, speaking better, and seeming to feel better generally. Please continue to pray. Things look promising.

Updates

My sister and I arrived to find a more coherent mother. But, she was irritated. Last night, she used the bathroom on herself and said that an aide was rude and dismissive of her. We have reported this to the charge nurse after being told by another day nurse that they have been receiving complaints about the night shift. The floor in her room is still dirty from yesterday and her iv was leaking. This, among other things, is infuriating. We are speaking to the necessary people and taking pictures. In good news, mom ate with us and is speaking better. She is less swollen and appears to be in less pain. At least, there is that news.

White Blood Cells Less

Todays visit proved somewhat reassuring and promising. We spoke to Dr. Del Toro. He says that her white blood cells are lower, 9000 in fact. This is good. It means that her bodies defensive team are less in numbers and that would mean her infections could be subsiding. She is being weaned off of the antibiotics so that her immune system can develop its own defenses. She is also suffering from a major yeast infection. It is causing her to itch tremendously. Towards the end of our visit she started to respond to us more. She still mutters incoherent speech. But, she seems to be in less pain. She has a 72 hour pain patch. Its still not the best time to visit. We will let you know when that time will be. Special birthday wishes and love to Aunt Elise. Thanks for your love, support, and time.

Healing Ongoing

Mom continues to heal at the wound care facility. We have observed a bed sore treatment that involves placing a special honey within her wound. We were happy to hear that it tends to be really successful and it sounds better than some of the other wound healing horrors we've heard of (maggot therapy and the painful dry/wet gauze yanking). Mom's energy is drained. Bathing is an uncomfortable process. They must move her often to alleviate pressure. Its all tiring for her, so she sleeps mostly. This may not be a good time to visit if you expect a dialogue. But, should you want to go over to pray, feel free.

My sister and I still face challenges. Currently, one of mom's top pain medications is not offered at this facility. They advise us to bring in her current supply. We have some objection to that because the medicine is expensive, not covered by insurance, and may not last throughout her stay. You would think a medical establishment would be able to acquire the necessary medication. Its really hard not to get exasperated with our health care system. In times of family health crises like this, you would rather not use your reserve energy to fight for what would seem to be the basic things you could expect from an establishment...an establishment that cares...perhaps, only if you have the right insurance.

I lament because I'm exhausted. Every hour presents some new form of adversity. I haven't been confident in the last 72 hours that I've been at my best. I suppose there are no rules of conduct for a situation like this.

My days (shared in responsibility with my sister) consist of making calls and arrangements for my mom, visiting my mom, some nursing of her, leaving feeling drained, much crying, much praying, tense arguments and conversations, having to write another to-do list of things for the next day, finding time to eat, feeling like there is not enough sleep to be had, and so much more.

In adversity, there is opportunity for growth. So, I know in my soul much growth is happening here. Its just so painful, and I ask that when you pray, you pray for my family and I to be able to embrace the great lessons here for us that will help us to be stronger and better people.