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.

Moving Forward

Special thanks to Cousin Andre, Raven, and Brandon that visited yesterday. It was great to see you guys.

Mom was transferred to a wound care facility in Youngsville. The facility is called LTAC of Louisiana. Visiting hours will be Monday through Friday 4pm-8pm and Saturdays and Sundays (9am-8pm). It is located down Pinhook going towards Broussard. Stay in the right lane and follow the curve near the Piggly Wiggly. It will be on your right side shortly after.

There she will stay for at least a month. Jennifer and I feel comfortable that her wound will be attended and surveyed daily. The doctor that she had at Lourdes hospital frequents LTAC. Should you visit, know that Mom is a bit out of it. She is conscious, but may murmur incomprehensibly and say off things. This is sometimes due to an infection in her body.

Looking ahead, we are hoping that we will not get denied further care. We were informed today that, at most, she may only be allowed six weeks to recover. Bed sores are lengthy in their recovery and can last months. However, once she has reached the 'time frame limit' (according to her insurance), we will have to rely on her home health care aides (young and often not qualified) to help Mom resume treatment at home. Learning information like this can be very discouraging. This is because my sister and I are always having to be on high alert and at attention for any lack of treatment options we may have to deal with due to lack of money and resources.

Please continue to send out prayers. Sometimes the weight of all of this feels unendurable. This has been especially so in the past 24 hours. The stress of all of this has strained us and their are frequent moments of exasperation and exhaustion bordering on complete hysteria. We believe in the power of prayer and request it so very much as we hope that it can carry us through these tough times.

Success

Just received word. Mom has been accepted to the Youngsville wound care facility and will be transferred today.

Wound Care Facility

My sister and I are on the quest for a great wound care facility. Word around the hospital is that there is a facility in Youngsville that is highly recommended. We like that one because it will ensure a continued relationship with Dr. Del Toro. He has been consistent and available, something oddly unfamiliar in our experience with moms doctors. So, please send out good energy for her to be accepted.

Central Line Surgery

The surgery to place the central line was successful. She had it placed in the optimal position which is in the higher part of the chest. Her antibiotics should resume today. In other great news, moms dentures were found. They had been missing since the transfer to ICU. We hope their recovery will aid her in eating.

New Challenges

Today has brought on new challenges. We have learned that mom is having trouble using the bathroom. She is not aware when she goes. We have been told by nurses that this happens and can be due to numbness from lack of mobility. We are concerned about this because we have not encountered this and worry about the bed sore at the small of her back that would be exposed. To make matters more complicated, her central line came out during our visit. The central line provides access to the host of is with antibiotics and medicine. An anesthesiologits attempted to put one back in twice at her neck without success. Fearing complications beyond his expertise, he recommended a surgeon. We had trouble contacting an on call surgeon because it is Sunday. This proved ridiculous because my sister and i found it to be an emergency because mom needs her antibiotics. To go twelve or more hours without them was a scary thought. We were ready to call for the hospital administrairon if necessary. Fortunately, we had an angel of a nurse who was adamant in advocating for us. In fact, both nurses this evening prove compassionate and exceptional. Thanks Jennifer and Christian. Finally, we were informed that there would be great risks for bleeding if mom were to have the surgery in less than 24 hours due to her recent dosage of blood thinning medication. So, surgery will be planned for tomorrow no earlier than noon. The great nurses attempted to put in an iv through her veins, but were unsuccessful. Mom has small veins. So,last we have learned is that she will be carefully monitored throughout the night. Having no ivs of medicine should not reverse her antibiotic effects is what we were reassured. So, please continue to pray. The journey still continues. Should you visit, feel free to take a PRAYERS FOR VIOLET card near the flowers. We have many.

X-Rays Confirm No Broken Ribs

X-rays confirmed that there are no broken bones or ribs. That's good news. So, now we are focusing on her wound care. My sister and I are trying to make sure that it is cleaned daily. It is difficult for baths, very painful. We were present during a bath yesterday. The lack of mobility has been causing mom to be unaware of when she needs to go to the bathroom. This could be due to numbness in that are because of the constant lying down. She is on a pressurized bed that allows for movement where she cannot move. But, we hope that each day brings more strength and less chest pain so that she may start becoming more mobile. Dr. Del Toro mentioned physical therapy a couple of days ago.

Healing seems to be progressing. Everything is very moment to moment. Soon, we will have special cards with prayers. Let me know if you would like one.