There is no easy way to break the news, so here I go...

My mom passed away last night at about 8 pm.  My dad, Shad, Jeni, Kolby, Judy (my mom's sister), and I were there with her. Luckily, she passed peacefully and quickly.

We are so proud of her valiant fight. She gave it her all.       

Being silly with Kolby in the airport in Greece. 

ICU Day 18

The edema seems to be improving in my mom's hands. It was the first thing I noticed after her event yesterday. 

Today my mom was weaned off the last blood pressure medication. She took a very restful, long nap today. My cousins visited her for a few hours this evening. They spent over an hour and a half moving her limbs. My mom was very responsive and appeared to be loving the physical therapy. My cousin told her all she wanted to do was give her the biggest hug and my mom squeezed her eyes tight, like she was giving her eye hug. The night nurse said she was able to sit my mom on the edge of her bed for 10 minutes and she wanted to keep going.

ICU Day 17

I didn't get the chance to pay attention to details today. My mom had another 'event' early this morning. My dad just happened to be there again. She hasn't had an event since the seven she experienced the first night and early morning she came to the ICU.

Her fever spiked to 102.3, her blood pressure started plummeting. Another infection. She was put on an IV antibiotic, two blood pressure medications, and they covered her body with ice bags. She made it through again.

She was very alert the rest of the day. She was determined to communicate. When given her writing board, she attempted to hold it with one hand and write with her other. It was a long process and frustrating on both ends. She just doesn't have the dexterity needed. Still difficult to determine how much she understands. The only clear consistent message we got was, she wants to go home.  Poor Mama. At least she isn't feeling pain.

Day 16 ICU

Today's goals:

tolerate tube feeding, rest & heal, mobilize and spontaneous breathing trials

Blood sugars have normalized enough that checks are done every 6 hours. The insulin drip is off. Tube feeding is still running at goal, but residuals have been hovering around 300 cc. Sodium is still in normal range. 

They are still treating the Diabetes Insipidus with an anti-diuretic. No spontaneous breathing trials today. Her breathing was too rapid. She was awake and alert most of the day. 

She did not need a bag of red blood cells. She did receive a bag of platelets. My mom hasn't been retaining platelets well. It seems as if her body is lysing them open (a possible reason for her jaundiced eye color). The question was asked: is this due to the trauma of sepsis or could there be a better match for her blood? In hopes to find out they are sending blood samples to the lab at the blood bank. This will take a few days, especially now that we are hitting the long weekend. 

We learned that improving my mom's edema is so much more than pulling excess water off her body with medication. Her blood needs to be replenished of the normal big molecules. When those molecules are in the blood stream, water naturally follows, out of the interstitial space and back into the vascular space. Increased absorption of the tube feeding should help with replacing protein and albumin. And the bone marrow should be adding white blood cells, red blood cells, and platelets. Blasted leukemia and MDS!! 

A complex, sensitive situation. One nurse compared it to my mom skating on a pond with the thinnest ice possible. So true. Balancing hope with reality is a true challenge, but I am sure I am preaching to the choir. 

Day 15 ICU

I struggled so much in days 13 and 14 because my mom's outward appearance was worsening. Her edema came back, severely in her hands. Due to her low platelets (clotting components of blood) she started developing a condition called petechia, small red spots on the skin caused by broken capillary blood vessels. 

The pulmonary technician performed my mom's first spontaneous breathing trial on Day 14. Mom lasted 10 minutes. Ideally they want to see slow, large breaths. This test didn't come easy, but it was a start. My mom ended with rapid, short breaths. 

The night of day 14, they started to work on motility by sitting her on the edge of her bed. This takes a team of 2-3 nurses. They stabilize her while she sits there for up to 5 minutes. 

Day 15
Goals: alertness, check blood sugars every hour, tube feed tolerance, rest and comfort, motility (sitting) and spontaneous breathing trials.

In the early morning they did another SBT, spontaneous breathing trial. Mom lasted for 20 minutes. 

I was fortunate to spend a good chunk of today with my mom. The edema and reddened skin is difficult to see, but once again she began demonstrating her will to get better. She kept moving her feet to exercise them. I sat with her and read many of your comments and words of encouragement. She began shrugging her shoulders and lifting her swollen arms ever so slightly. More exercise. She wiggled her finger, like she wanted to write on her board again. Sadly, it just wasn't possible with her severe edema in her hands.  

Anything the nurse asked of my mom, she nodded, yes I will do it. Do you want to sit up? Yes. So a team of three nurses stabilized her at the edge of her bed for 5 minutes. My mom grimaced and it didn't look easy. The nurse asked, do you want to try to stand up? My mom nodded, yes. She wasn't able to stand, but her willingness to try amazed me.

Her sodium level was moving in the right direction. Her blood sugars were staying within normal range with a few outside range ever so slighting. This allowed the nurses to cut the volume of D5 solution, a sugar solution, in half and lower IV insulin levels. Protocol for checking sugars is: if she gets 3 consecutive blood sugar readings between normal range of 80-150, then they can begin checking her levels every two hours. She had three normal reads, then a 152. Bummer. 

She was tolerating her tube feeding better last night, so they adjusted the rate to goal, I believe 45 cc/hour. I saw the nurse check residuals (how much remains in the stomach). They were decent, 275 cc, especially with the tube feed running at goal. If they get to 500 cc they have to stop the feed. 

The third spontaneous breathing trial was performed. Mom lasted almost 20 minutes.

Part of her recovery after chemotherapy is giving her units of platelets and RBCs, packed red blood cells, until her bone marrow kicks in and starts making its own. My mom's MDS, bone marrow disorder slows this process. She has been given many units of platelets and RBCs in the ICU. Today she received a unit of platelets, but didn't need RBCs. 

My mom continues to press forward. 


***(Thanks for your patience with my posts, proof reading isn't as important to me as just getting the daily reports out).

ICU Day 13 & 14

I apologize for the delayed post, I am having difficulty knowing what to write.  The last two days have been a challenge.  The balancing regime still goes forward, but her outward appearance is getting worse.

I wish I had better news.  Wish I knew this blog would have the ending we all hope for.  The one comfort I find in this situation is knowing that Heavenly Father loves my mom, He is mindful of her, and will do what is best for her.

You all hang in there. We love you.

ICU Day 12

Today's goals: wake up, comfort, decrease sodium, transfuse 1 unit blood and 1 unit platelets. 

Today was pretty similar to yesterday. Awake more often. She passed all response tests given by the nurses.  

The nurse reported that sodium levels came down some. She spent the day chasing blood sugars, but they never reached out of control levels. Her tube feeding digestion is still not on target, but hasn't had to be stopped either. 

The pulmonary technician attempted to explain the ventilator to me. I really, really tried to comprehend, but it just wasn't happening. Sorry. 

The doctor was pleased by the direction my mom is heading. He said he is hoping to start self breathing trials in the next few days. The breathing tube stays put, but they set the ventilator to a mode that gives her a test run for up to one hour. 

ICU Day 11

The nurse's goals for today were: increase level of consciousness, stable electrolytes, and comfort. 

The roller coaster ride continues. This morning we started bracing ourselves for a dip downward when the doctor ordered a CT scan of my mom's brain. This order was triggered by a few different abnormalities. The first being, irregular eye movement noted in the nurse's early morning assessment. Next, my mom's sodium level is still too high. Elevated levels can negatively affect the brain and other organs. And lastly, her kidneys started dumping excessive amounts of urine, but unfortunately the sodium wasn't following. The question was asked, could this be diabetes insipidus, a disorder of salt and water metabolism marked by intense thirst and heavy urination? Diabetes insipidus is a condition caused by a hormonal abnormality and isn't related to diabetes. The pituitary gland in the brain normally should release an anti-diuretic hormone in this situation. Was irregular function of the pituitary gland the culprit?

Well, the good news is, the CT scan came back normal. The doctor started a new medication, desmopressin, to treat diabetes insipidus and slow urine output. I am telling you, stabilizing electrolytes is such balancing act. I am truly amazed by our team of doctors and nurses. They are fantastic. 

Our rollercoaster car took us upward today as well. My mom's sedative, Propofol, was turned off and her body remained relaxed. This hasn't been the case for an entire week. The nurse told us she was opening her eyes, looking at her when she called her name, and tracking her when she moved across the room. My mom was also able to nod her head and wiggle her toes slightly. It was comforting to see her look at us. We gave her an optimistic update and told her how proud we were of her, etc. 

Onward and upward, one day at a time. 

ICU Day 10

She is still on the ventilator. 

She has not been coherent/responsive since Saturday, May 14th. Brain scans show that this is not due to neurological dysfunction. The doctors think her unresponsiveness is from toxin build-up from heavy meds, elevated liver enzymes, and unbalanced electrolytes. It is a condition that can be corrected and they work on it everyday in various ways.  

She has been weaned off all blood pressure medications. 

The antibiotics have stopped the initial infection. 

She responded well to the diuretics used to pull extra fluid off her body. Diuretics have been used less in the last day and her kidneys are showing to be working well and pulling fluid off on their own. It is a slow process. 

She has been on a tube feeding at a very slow rate. Digestion and gut motility haven't been successful for many days, but last night it seemed to be picking up.

Today the doctor explained.... It is expected to be a long road. Recovery is possible if nothing catastrophic occurs again. She is still at great risk for another infection. 

We take it one day at a time. Some days bring no news.  

Week One in the ICU

I must begin by saying that my mom's care in the ICU has been wonderful. All nurses have been great. We have been blessed with a few that surpass expectations; bringing us great comfort and caring for my mom in a way they would their own mothers. 

A team of doctors keep watch over my mom: pulmonary experts, infectious disease, oncologists, critical care specialists, etc. They update us regularly and explain her condition. From the beginning we were told of her extremely fragile, critical condition, and encouraged to be 'cautiously hopeful.' 

Each day we celebrate tiny improvements in my mom's condition. She has continued in a very gradual upward trend with occasional setbacks, and new complications. 

A Tragic Night: Tuesday, May 10th

Many of us had visited my mom on Tuesday morning, afternoon, and early evening.  All seemed to be well.  However, that evening, things weren't right and my mom became sick very quickly. 

She was rushed to the ICU around 7 pm, my dad was with her.  She had sepsis and with no time at all she was in septic shock.  A large group of ICU nurses and doctors congregated around her bed doing all possible to save her.  She was put on a ventilator, all four blood pressure meds possible, and general antibiotics. My dad watched multiple episodes where her blood pressure plummeted, and her chances were dismal.   I arrived at the ICU around 10 pm and witnessed the same close calls.  We purchased flights for Shad and Kolby, while standing outside my mom's room. Not able to reach Jeni, I called my husband, Blake, and he went to her house and brought her to the hospital. A few more close calls occurred.

The doctors did not think my mom would make it through the next day. Being the fighter she is, she held on. Intubated, with 11 IVs, she began trying to communicate with her nurse by drawing letters in the air with her finger. 

We found the kids' Boogie writing board and she wrote simple words with her finger.  She wrote basic needs like: eat, nose (needing it scratched), eye (needing it scratched), and light (off so she could sleep).  Even in this critical state, her humor and personality shined through.  Once she wrote, spa day, while moving her other hand in a circle (meaning she wanted to go to the spa with her daughters and sister when she got out of the ICU). A couple times she wrote, am I going to make it? Our hearts were full as we encouraged her, cheered on her amazing efforts, and told her how surprised the doctors were by her strength. When we told her what a great job she was doing, she started moving her hands in circles and slightly shaking her hips. She was showing us her willingness to exercise and not give up. We laughed and wanted to cry at the same time. 

A Heart Felt Thank You

I wanted to take a moment to thank the countless number of you who have reached out to my mom and family the last few months. We are forever grateful for the outpouring of love, gifts, service, and prayers. We hope you know of our appreciation for you and wish we could give you the proper thank you, you all deserve. 

We can only imagine how hard it is for you to be on the outside, not knowing how my mom is doing or being able to see her. Since visitors are restricted to family only, we hope this blog helps. We love you all.

The Past Few Months

As many of you know, my mom, Nancy, was diagnosed with Acute Myeloid Leukemia in early February.  She had been sick with flu-like symptoms and a severe sore throat for many days.  When antibiotics didn't help her throat, she went to the ER.  She left undiagnosed, but was encouraged to follow up with an ENT (ear nose throat) doctor that week.  Dr. Ludlow, a friend from church, came in on his day off to see my mom (Tuesday, February 9th).  After doing blood work, he contacted an oncologist to see her as soon as possible.

It was at her first oncology appointment, Thursday, February 11th, that she was asked to gather her things at home and check into the hospital that same day.  There, she would receive chemotherapy the first week and stay another 2-3 weeks to recover.

During her stay at the hospital, her oncologists discovered that she also had another underlying issue, a condition called myelodysplastic syndrome (MDS) and often referred to as bone marrow failure disorder.  This disorder would be a factor in complicating her treatment and increased the stubbornness of her leukemia.  Unfortunately, the stay at the hospital was extremely difficult and lasted six weeks.  The light at the end of the tunnel was that the bone marrow biopsy after chemo revealed my mom was technically in remission.  She was discharged from the hospital and able to spend the next five weeks at home.

Although the time at home was more comfortable, it was no 'walk in the park' either. She was weak, still needing blood transfusions occasionally in an outpatient setting. Her appetite never fully recovered, but she worked hard to eat what she could, drinking protein shakes to supplement her diet. She took short walks as often as she could to build her muscles and gain strength. After a third bone marrow biopsy, she learned of more devastating news - the cancer was back. Her oncologist researched the best options for her next treatment, contacting specialists at nearby bigger cities. She was given three options, and she chose to do a similar inpatient chemotherapy/recovery treatment at the same hospital in Reno. Again, she would expect chemo the first week and 2-3 weeks to recover.

She was admitted into the hospital on Monday, May 1st and completed her treatment, Saturday, May 7th.  This round was completely different.  She was able to prepare herself mentally and remained optimistic.  She was very proactive in her own care: eating well, showering herself, walking the unit often, and sitting in her chair as much as she could.  She even met with a counselor provided by the hospital to encourage optimal mental strength.  The oncology nurses had grown to love her during her first lengthy stay and 'took dibs' on who was assigned to her each day.  We were all so proud of her determination.