Trial

So this morning the RT decided to try taking her off the bipap mask while we did her "wiggly jiggly".  She did fantastic...no dips in o2.  Heartrate stayed good and respirations stayed good.  She coughed up a bunch of stuff.

The Dr.'s rounded on her while she was off the mask and thought she looked great.  So they decided to do a few 2 hour trials today.  2 hours off bipap mask and on nasal canula (giving her o2 but no pressure support or breaths of air).  Then 4 hours back on the 10/10 bipap settings.  Unless she is asleep, then go back up to 16/10.

She did 2 straight hours off the bipap mask and did superb!  No desats, ans her heartrate and respirations stayed great.

I am so pleased and honestly quite a bit surprised at how well she did!!!!

She is no longer puffy.  They have stopped the Lasix.

Her potassium is low (from the lasix making her urinate) so they are giving her 3 doses of potassium today.

She is back on the mask now and doing fine.  She really really liked having it off though.

Great progress today.  Very encouraging.  Her left lower lobe still sounds decreased.  I asked the Dr.'s about it and they said pnemonia can take weeks to fully recover from (even once we go home).

While her mask was off we brushed, washed, blow-dried and styled her hair.  I took a really cute pic of her...but I didn't realize the memory card wasn't on the camera, so it saved on the internal memory and I don't have the cord with me.

I got to go to church today (Fast and Testimony Meeting).  It was great as always.  It never fails that there is someone there that you think...wow...I don't have it so bad.  There was a Dad who said 4 years ago their son died in this hospital and now they are back with his twin brother.  The funny thing to me is he might hear my story and say wow...I don't have it so bad.  Heavenly Father knows our strengths and our weaknesses and what we can or can't handle.

I kept thinking about the quote that one of my previous nurses shared with me recently...another special needs mom told her "If you think my plate is full, you should see my heart."  It is so true.  I would not be a tenth of the person I am today without the things that raising Ellie has taught me.  I am honored that Heavenly Father trusted Jason and I with one of his most precious daughters.  Heavenly Father loved me enough to send me a challenge that he knew I could grow from.

Ellie has taught me patience.  She is the most patient person I have ever met.  I strive to be like her.  We are all dependent on someone else...Jesus. We cannot return to God without Christ's help.  I am shown this example by Ellie every minute of every day.  She puts her full faith in me to take care of her and do the things for her that she cannot do herself.  I have learned to love people who are different.  I don't think I could have truly learned this any other way.

Ellie is a fighter.  She is determined.  There have been so many times that I'm sure she could have chosen to go home (to heaven).  Lost her will to live and gone home to God.  I am touched that she loves us and loves life enough to continue on.

I don't think there is a person Ellie doesn't like.  She purely shows unconditional love.  She has taught me what is really important in this life.  If my bed doesn't get made, if I don't have a home-cooked meal every day...etc...etc...it's okay.  And I really am okay with it.  Life is too precious.  Enjoy your friends and family.  Come unto God.  Allow Christ to ease your burdens and cares.  Prove to your loving Father in Heaven that you will follow Him and his Son.  That is truly the purpose in this life, it is a test.  We don't have to be perfect.  That is where Christ comes in.  Do you have to try to make good choices?  Absolutely.

In the last General Conference Elder Kent F. Richards quotes Elder Dallin Oaks and then tells a beautiful story about a little girl in the Intensive Care Unit.  Here is an excerpt...

As Elder Dallin H. Oaks has taught: “Healing blessings come in many ways, each suited to our individual needs, as known to Him who loves us best. Sometimes a ‘healing’ cures our illness or lifts our burden. But sometimes we are ‘healed’ by being given strength or understanding or patience to bear the burdens placed upon us.”¹⁷ All that will come may be “clasped in the arms of Jesus.”¹⁸ All souls can be healed by His power. All pain can be soothed. In Him, we can “find rest unto [our] souls.”¹⁹ Our mortal circumstances may not immediately change, but our pain, worry, suffering, and fear can be swallowed up in His peace and healing balm.

I have noted that children are often more naturally accepting of pain and suffering. They quietly endure with humility and meekness. I have felt a beautiful, sweet spirit surrounding these little ones.

Thirteen-year-old Sherrie underwent a 14-hour operation for a tumor on her spinal cord. As she regained consciousness in the intensive care unit, she said: “Daddy, Aunt Cheryl is here, … and … Grandpa Norman … and Grandma Brown … are here. And Daddy, who is that standing beside you? … He looks like you, only taller. … He says he’s your brother, Jimmy.” Her uncle Jimmy had died at age 13 of cystic fibrosis.

“For nearly an hour, Sherrie … described her visitors, all deceased family members. Exhausted, she then fell asleep.”

Later she told her father, “Daddy, all of the children here in the intensive care unit have angels helping them.”²⁰

Back to Mikael writing now...What a beautiful story.  I wonder who Ellie's angels are?

Here is a link to the entire article by Elder Richards.  The whole talk was really good.  http://lds.org/general-conference/2011/04/the-atonement-covers-all-pain?lang=eng&query=angels+intensive+care

I hope you each have a great Sunday.  Take some time to ponder these questions...Do I believe there is a God?  What do I know about God?  What is my relationship like with God?  What do I want my relationship to be like with God?

Do not procrastinate the day of your repentance.  Now is the time to prepare to meet God.

Okay...I will now step down off my spiritual soapbox.  My heart was full and I needed to get out my feelings. So thank you for indulging me.