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.