Open letter to my mom’s nurses

To all the nurses who have stood by our side, this is for you.

I can honestly say I didn’t know any nurses on a personal level until having to experience my mom in the hospital. I’ve had a front row seat in watching and admiring their craft. In honor of this week, I have written an open letter to all the nurses who have and continue to care for my mom.

Dear Nurses,

Thank you for being by my mom’s side every single day and trying your very hardest in making her comfortable in any way you can. Thank you for putting your life on the line to provide exceptional care for our mom. I know it’s said to be “just part of your job,” but it’s a job not everyone is willing to fill.

Thank you for putting your life at risk to stand at her bedside while she was an extremely contagious patient for twelve hours at a time, sometimes even longer. We understand how tedious and difficult it is to put and take off full protective gear over and over again. We know how hot, sweaty and unbearable it gets. We watched as you patiently took care of my critically ill mom with continually changing needs. We can only imagine how much that hurts mentally, physically, and emotionally. But, because you are nurses, you deal with it with a smile on our face and carry on.

As nurses, you also took on another a task, not in your job description but one you took on with a whole heart, us the family. With just a look at any of us, you’d almost instantly ask what you could do to help. You helped try to cheer us up when we did not have the strength to do so, and you made us laugh so much that we often forgot about how weak and sad we felt.

You hugged and consoled us when we fell to pieces moments after my mom’s heart stopped and cried tears of joy as you helped bring her back alongside the doctors. Your tears were pure, filled with love and prayer for a family you did not know.

How can we thank you for the many times you would ask about mom’s life and the person she was, taking the time to look at her photos or hear the stories we would tell about her. Or when you offered a sympathetic shoulder and a compassionate hand every time bad news was delivered. The doctor would leave, and you were left behind to answer the lingering questions and explain why these things happen and watch as our world crumbled around us. You stayed, and you endured the confusion and tears and offered relief any way you could. Even if, realistically, you didn’t know what to do.

We can never thank you enough for the warm embraces. Your dedication never wavered no matter if your shift was up or it was a holiday. You didn’t go unnoticed that Christmas day you spent in a tiny ICU room alongside us instead of watching your babies open their presents. “A Christmas miracle” you proclaimed as we cried tears of joy in seeing my mom open her eyes for the first time in months.

You’re overlooked and under-appreciated yet necessary. You’re patient when it’s understandably impracticable to be, and you’re kind when it’s physically impossible to be. So, for all the moments we had with you where those two words were painfully inadequate yet unbelievably necessary. For the moments we as a family neglected in stressful situations and shoved them aside as fear took over and rarely voiced when they should have been…from the bottom of our hearts, Thank you.

Happy National Nurses Week!

Shes on THE list!

Hi, it’s me again. This time I’m writing to you from Los Angeles, California!

Mom is still in the hospital, and she’s officially waiting on her lungs! As you recall we left Houston and transferred her to UCLA since Texas denied her on their transplant list. (Click here for a refresher)

On April 26th her birthday and Orthodox Good Friday mom was placed on the regional list for a lung transplant!! She was so excited. It’s felt like the longest journey to get to this point. The joy of being placed on the list did quickly come with the constant wonder of how much longer will she have to wait for the perfect set of lungs to come in. 

The reason she isn’t on a national transplant list is because of how delicate lungs are. Since lungs can’t live outside of the body for very long, they need to be nearby for a successful surgery.

She is still on the ECMO machine and oxygen. She is still trying her hardest to do her simple daily tasks to regain her strength. The team at UCLA has also put her on a precaution, which means we all wear masks while in her room to help keep her safe from any germs while the search is on for the perfect set of lungs.

The team at UCLA has been nothing short of amazing. They are incredibly knowledgeable, compassionate, and quick. The team was even kind enough to arrange for some previous patients in somewhat of a similar situation as my mom to come and visit in hopes of giving my mom some hope for the future. We were able to meet Nichole and her daughter Lexi this last week. Nichole, like my mom, was also on ECMO with high antibodies. She received her double lung transplant Jan 2019. She looks AWESOME. Nichole was able to relate to my mom, and Lexi her daughter was able to connect with me. It felt amazing to feel understood. Nichole shared a good amount of tips and tricks with us.

While mom is waiting for her lungs to come in, my dad and brother, have started to wrap up life in Houston. They are moving back “home” to LA very soon. Thank you from the bottom of our hearts for your support and constant prayers. 

“And now these three remain faith, hope, and love. But the greatest of these is love.

Mama Miriam

I appreciate everyone who has supported my family during this troubling time with patience, prayers, and acts of kindness. Although I will never be or feel ready to accept this harsh reality, I thought it was fair to share what has been going on.

Simple cold like symptoms turned our worlds upside down.

My mom, Miriam, has been very sick since the fall of 2018. What we initially thought was just a common cold turned out to be something much worse. Before the inevitable is asked, yes she did receive her flu shot.

On a Friday morning in early-November, mom was struggling to breathe. My sister, Eliza, RUSHED her to the emergency room. After several tests and x-rays, it was evident that she needed more assistance than the local emergency room could provide so she was quickly transferred to CHI St. Luke’s in Sugar Land, Texas. There she was given antibiotics and placed on heavy doses of oxygen but she was still fighting to breathe.

The fluid build up in my mom’s lungs caused tremendous discomfort and pain which she battled alongside her inability to breathe for 3 days. After aggressive negotiations with the doctors, she was intubated and transferred to the Texas Medical Center (TMC).

Still trying to catch our breath from rushing over to this new hospital, we were greeted by a pulmonologist who told us that mom had been immediately wheeled back to the operating room to get an ECMO placed in her. She had come back positive for flu and double pneumonia. He stated “We are racing against time” the first of many times we would hear that phrase.

With no signs of recovering after what doctors thought a weeks worth of ECMO could help with, she was diagnosed with Acute Respiratory Distress Syndrome, or ARDS, a condition that causes fluid to leak into your lungs, blocking oxygen from traveling to your organs.

Mom was placed under a medically induced coma and paralyzed to prevent her from using too much oxygen and to give her body a break from the constant endeavor of fighting for air. The days grew into weeks which turned into months and continued to grow darker each minute for us as we prayed for some improvement.

Mom did not improve even with all the assistance she was supplied. She flat-lined several times and grew weaker with every attempt of help. Various professionals approached us with their thoughts on her case with very little optimism. The holidays were spent with medical predictions of a 2% chance of recovery. Doctors suggested we call out all immediate family members to say their final goodbyes.

As our family began to arrive, physicians slowly scaled back on her medical assistance. As expected she began to further decline at rapid speed. With the grace of God she survived through the night and would continue to fight for her life. After 45 days in a coma and having been medically paralyzed doctors began the process of waking her from a coma with a goal of confirming that she still had full neurological capacity. By the grace of God, the x-rays taken confirmed that she was still there in mind.

The process of waking her out of the coma was a battle. At first, she had no movement or recognition of anyone. Soon after she was able to recognize our faces and voices which was ground-breaking. Our hope increased alongside her increasing motor functions and after months of heartbreak, we finally seemed to have a glimmer of hope. Heartbreak struck once again, she came down with shingles and a few days later, sepsis shock. Two steps forward and ten steps back. Back into a coma and becoming medically paralyzed. We watched silently with our hearts shattered as mom struggled for her life.

Another miracle, mom pushed through the shingles and sepsis shock only to have her ECMO cannulas begin to bleed out at her neck. “Her body is so weak she just can’t handle another surgery”, we were told. We pushed and begged for the cannulas to be fixed. Our options included the following: watch her bleed to death before our eyes or beg for a surgery she may not survive. A double-sided sword to say the least.

We opted for surgery. Her cannulas were moved and scans showed that every last bit of her lungs were destroyed by the shingles and Sepsis. Mom would undoubtedly need a double lung transplant to survive but would not even be considered unless she checked every box on a long list of requirements. Just as we got a peek of the mountain top we slid back down to the bottom now facing another uphill battle.

One of the top items on mom’s transplant consideration list was getting out of bed and walking for a specified distance, unassisted. To able-bodied individuals, this seems easy but she had been in a coma for months and bed-ridden for even longer. She hadn’t stood up in over 3 and a half months when she began physical therapy to strengthen her muscles.

This was an extremely painful process but mom fought through and eventually was able to stand with a great deal of assistance. In the middle of March of this year, she was finally able to get up and walk with little assistance. Bearing the tremendous pain, she continued to walk regularly for several weeks until eventually, she doubled the minimum walking requirement to be eligible for transplant consideration.

Once she undoubtedly met the physical requirements for transplant consideration, the transplant team needed various tests run to see what type of lungs would be a match for her. Here comes another peek at the mountain top. One of the various tests included an antibody count which basically quantifies a patient’s likelihood of rejecting an outside organ. Mom’s antibody count was so high that it gave her a 100% chance of rejecting a new organ which was a hard stop for her transplant consideration at CHI St. Luke’s in TMC.

We began to desperately reach to the best lung transplant hospitals in the nation attempting to get more information on how we can get her to an institution that would be willing to work with this unique patient and case. At the beginning of April, we got a call from UCLA stating they would be willing to take mom as a patient. It would then take us two weeks of battling transportation who demanded $387,000 upfront for transportation and insurance to come to a doable agreement.

On April 19, 2019, mom was transferred to UCLA and is awaiting further tests in hopes of receiving the care she needs to be added to the transplant list. Hopefully, once she does receive the double lung transplant and new heart valve, she will be required to stay close to UCLA for at least a year in order to be close to her medical team in case of any complications.

This is where we stand now. I will try to post a weekly update on my mom and keep everyone informed.

Many of you have asked how you could help my mom. I am humbled to know so many of you care and would like to help. As I’m sure many of you have assumed. PTO’s have been maxed out, jobs have been left, FMLA has been used and some jobs have been lost. 6 months of having a loved one in ICU collides with the reality of the world, careers, bill, etc.

if you would like to help monetarily below you will find information on how to do so.

PayPal: paypal.me/MiriamMerianos or
MiriamMerianos73@gmail.com
Venmo: @Miriam-Merianos

Gofundme– https://www.gofundme.com/f/mama-miriam

How to Help Mama Miriam

Again, we appreciate your want in helping our mother during this time.

How will these donations be used: 

  1. Medical bills 
  2. Costs for relocating
  3. Parking fees