the ridlehoover family blog

My mom passed away just after lunch, today.  She was 61. Mom died of liver failure, caused by cirrhosis, brought on by nonalcoholic steatohepatitis (NASH).  She was diagnosed on December 7, 2006.  But, by that point, she was already too weak for doctors to place her on the transplant list. Over the next two years, mom’s health took two steps backward for every step forward.  She was in and out of the hospital several times, eventually landing at Providence Marianwood nursing home in Issaquah last June. During the last couple weeks of her life, mom declined rapidly.  She stopped eating a week ago.  We stopped treating her illness in favor of making her comfortable on Monday.  And, starting on Tuesday, the nursing staff began to tell us that she could go anytime.  She hung around for another four days. Apparently, she was waiting until she could be alone with her three boys.  This morning, James (her husband), Mike (my brother), and I sat in her room, sharing our favorite memories of her.  We cried a little; but we laughed more.  I think she took it as a sign that we were going to be okay.  It gave her permission to slip away. At lunchtime, Mike and I left the room to help Jill feed the twins.  James took his lunch with her.  Afterward, he came out to check on us.  When he returned, ten minutes later, she was gone. Previously, mom expressed to me anxiety about dying.  There was no sign of it, today.  Rather, after her passing, I experienced a very deep calm.  I felt that she was at finally peace, finally resting after years of pain and suffering.  Her body failed her, but not her spirit. The family is planning to get together to remember mom sometime this summer.  We don’t have specifics, yet.  I’ll publish them here when we do. In the meantime, Jill and I plan to make donations to the following organizations in mom’s memory:

• Providence Marianwood Foundation (Where the need is greatest)

Mom lived at Providence Marianwood for the final nine months of her life.  The level of care and compassion she received was simply outstanding.

• Swedish Medical Center Foundation (Charity Care)

Swedish Medical Center is where mom first learned of her liver disease.  She spent a week in the hospital, including three days in the ICU.  But, mom and James had only been back in the states for a week.  They did not have jobs.  They did not have insurance.  There was no way for them to repay Swedish for services rendered.  Swedish Charity Care paid for everything.

• American Liver Foundation

While mom did not benefit directly from the work of the American Liver Foundation, we hope that others will. Rest in peace, mom.  We love you.  We'll miss you.  We'll see you when our times come.

Hunter and Grace did a little on camera work a couple of days ago.  It was almost bed time.  So, they're pretty tired looking.  But, this is a pretty good example of their personalities:  (As always, better quality video can be found on our MobileMe gallery.) Hunter's Helmet [youtube=http://www.youtube.com/watch?v=Y84IXh8maP4&feature=player_profilepage] For those of you wondering why Hunter is still wearing his football player Halloween costume, he's actually wearing the helmet to correct a flat spot on his skull. It's a condition known as plagiocephaly. He has a mild case.  His hair would likely cover it up eventually. But, we figured we'd give the helmet a try and see what happens. No sense putting up with all those flat head jokes later in life, if you don't have to. :) Gracie's Revenge [youtube=http://www.youtube.com/watch?v=64ZkGU3_thA&feature=player_profilepage] Both Hunter and Grace are definitely being themselves in these videos. Hunter is generally content to sit and play with a toy. Gracie is into everything. I wonder which is closer to me and which is closer to Jill?

Now that I'm back at work, there's not nearly as much time to take pictures, shoot video, or blog about daily changes.  So, I have no new pictures or video, but I do have a milestone that needs to be reported: Hunter has a tooth! We first noticed Hunter's tooth - a lower incisor - late last week.  Not to be outdone... Gracie has two teeth! Grace's teeth - also lower incisors - first showed up on Monday.  No more putting our fingers in their mouths as a temporary binky!  (Ouch!)

After a couple of weeks of relative normalcy, Mom is back to having issues.  Within the last couple of days, she's started having difficulty keeping food down.  And, yesterday, she was running a temperature of 102, which could be related to an infection.  More when I have a better idea what's going on... As always, please keep Mom (and our family) in your thoughts and prayers.

Last night, at about midnight, mom woke up!  She spoke to the nursing home staff, asked about James, and wanted to speak to him.  The staff politely refused to call James, since they knew he'd be there first thing in the morning, like he is every day... When James did arrive, mom chewed him out.  She thought he'd been off golfing all this time.  And, boy was she mad!  (In reality, she's been the one who left the building.  James has been by her side almost constantly since this episode began over a week ago.) Jill dropped the twins and I off at the nursing home at about 10:00 this morning.  (Jill had an appointment.)  My brother (Mike), and his wife (Kristie), arrived a few minutes later.  (They arrived from Coeur d'Alene, Idaho last night.)  Mom was awake and relatively alert.  She made eye contact with me for the first time since this bout of encephalopathy began.  And, she coaxed smiles from both Hunter and Grace, who promptly returned the favor.  Mike gave her his patented "12 hugs" with kisses to match.  It was a very happy room! So, mom is now coming out of her encephalopathy.  Last week, she was at "Grade 3" on the 1 to 4 scale of encephalopathy (where 4 = coma).  Today, I would say that she's at "Grade 2."  She is awake and communicating, though still groggy and having difficulty finding words to express herself.  She even fed herself part of her lunch.  And, no wonder - her ammonia level has dropped to 106 as of yesterday morning, and is likely still falling as the lactulose seems to be doing its job. I've not spoken to her doctor, but my hope is that her short-term prognosis is now much improved, since she is responding well to treatment.  Hopefully, by this time next week, mom will be back to baseline.  Though, it is not outside the realm of possibilities that mom could slip backwards.  And, quite certainly, mom's long-term prognosis isn't good.  The ammonia will be back, and with it will come the encephalopathy. This has been a very scary experience for all of us.  Now that mom's regaining consciousness, I'm certain that each of us will find a way to communicate to mom how much she means to us.  James, especially, was bouncing around and beaming, today.  His girl is on her way back!  It was clear to see that he is incredibly happy, which helps mom tremendously. One last bit of news to report today:  James went ahead and signed mom up for hospice care.  The hospice admitting nurse met with all of us today.  She explained the services offered by her team.  And, she examined mom, looked at her charts and spoke to the consulting hospice physician about mom's meds.  They're going to add something for the itching, as well as a medicine to help with the disorientation/confusion associated with the encephalopathy. More as we know it... Many thanks, again, to everyone who is keeping mom and the rest of us in their thoughts and prayers.  We can feel the love!

I just got off the phone with James (mom's husband).  He said that Mom appears to be slowly waking up.  She is recognizing people and trying to communicate.  This could be VERY good news!  I'll post more information as it comes in... Thanks to everyone who is keeping mom in their thoughts and prayers.

My mom is terminally ill.  She has cirrhosis of the liver, caused by a condition know as NASH.  And, recently she took a turn for the worse.  Since last Friday, she's been in a semi-conscious state brought on by extremely high levels of ammonia in her blood stream - a condition known as encephalopathy. She is able to respond to simple voice commands.  She can answer yes/no questions.  And, she's eating when someone feeds her.  But, she cannot carry on a conversation.  She cannot answer anything but yes/no questions.  And, her eyes, vacant and glossy, look right through you when you do manage to get her attention.  She spends most of her time in a sleepy haze of pain (from various bruises and sores related to spending all of her time in bed) and itching (from the toxins in her blood stream coming out through the skin). The treatment for this condition is a medication called lactulose, which traps the ammonia created during the digestion process in the colon, before it has a chance to be absorbed into the blood stream.  Mom is on a high dose of lactulose now, as she has been for a couple of years.  And, between last Friday and last Monday, her ammonia level dropped by almost 100 points.  But, at that time, it was still over 160.  (Healthy people have an ammonia level below 35.) At this point, the prognosis is mixed.  Mom could "wake up" tomorrow, regain some or most of her cognitive abilities, and go on to live for many more months or even years.  Or, she could stay in this sleepy, itchy, painful purgatory, eclipsed by this veil of ammonia.  Or, she could fall into a complete coma, stop eating, and die.  There's just no way to know.  What we do know is that if she stops eating, she will pass away from malnutrition within two to three weeks. We've known this was a possibility ever since mom was diagnosed back in December, 2006.  We hoped that she would qualify for a liver transplant.  But, unfortunately, her disease was already too far along when it was detected.  She was never deemed strong enough to survive the operation, and was therefore never placed on the transplant list.  Now, she's being placed on a different sort of list - she's being placed in hospice. I know my mom loves me.  And, I know she knows I love her.  But, I would dearly love the opportunity to tell her one more time, to share one more laugh, and to hug each other and cry together one last time, as would all of her friends and family. Please say a prayer for my mom.  May God bless her.  May God ease her pain.  And, may God share our thoughts and prayers with her so they might give her solace on her journey from us to Him, no matter how long it takes.

Have you ever tried baby food?  I swear, if I could get my cooked carrots to taste this good, I'd eat them every day! Gracie and Hunter have been experimenting with rice cereal for a while now.  But, this week, we introduced them to carrots.  Hunter had his doubts at first.  But, he seems to have adjusted.  Gracie, on the other hand, likes the carrots so much, we have to feed her all her formula before bringing out the oozy, orange goodness!  The minute she starts on the carrots, she doesn't want anything more to do with the bottle...

My bad!  When writing the post below, I hadn't reviewed the nurse's notes from Hunter and Grace's six month checkup.  I have now and I must issue a retraction:  Gracie is not in the 50th percentile.  She is actually in the 50-75th percentile range - the same range as Hunter.  As most people who meet them note - these kids aren't skipping any meals! Also, I mentioned that we will be taking Hunter to see the head doctor, which I referred to as the "cranial/facial" doctor.  Turns out, they're actually called "craniofacial" doctors.  A thousand pardons...

Gracie and Hunter turned six months old on Sunday.  To celebrate, we sang "Happy Birthday" and ate rice cereal. Today, the twins granted an audience to their pediatrician who promptly poked them and prodded them and declared that all is well.  The official statistics are as follows:

• Hunter weighed 17 pounds, 14 ounces and measured 26.25 inches.  He is in the 50-75th percentile.
• Gracie weighed 16 pounds, 6 ounces and measured the same as Hunter.  She is in the 50th percentile.

More good news:  Gracie's heart murmur was imperceptible.  But we're still going to take her back to the cardiologist in a couple weeks just to be safe. A little less-good news:  Hunter has developed a flat spot on the back of his head.  It's been that way for several months.  And, it's not getting better on it's own.  So, we're going to take him to the cranial/facial specialists at Children's Hospital to hear what can be done to correct the problem.  It's purely cosmetic.  But, it's probably better to get it done now, before he develops his Dad's infamously hard head. All in all, it was a fantastic doctor appointment.  To celebrate, we poked each baby in the leg three times - two immunizations and a flu vaccine.  Happy! Happy! Joy! Joy!