Wednesday, March 30, 2011

Some recent Pictures

Sarah and David were having fun with the camera again...

 Endurance enjoying a good day.  He's trying to suck his thumb that's always hiding in his fist!

He's holding onto his little mouse friend's paw.  He loves these mice!  Endurance and his mice have stirred up many a conversation between doctors, nurses, and RT's.  We're looking for one more so they can become the three blind mice group.

This necklace has a story of it's own...

I saw a poster in the oncology department here at the hospital when David and I were went exploring back in November.  The organization promoting the poster is called Beads of Change.  How it works is a patient (cancer and cardiac)  can sign up for a necklace and everytime they receive a certain treatment or go through something like a surgery, have a blood transfusion, ICU stay, etc; they receive a special glass bead that corresponds to the procedure listed on a chart.  The beads add up and a necklace is formed during a lengthy hospital stay.

So about six weeks ago I asked Wendy from the Child Life dept. if Endurance could get something through the Beads of Change, as I went on their website and Seattle Children's does it, and is the only one in WA that does.  She said she'd find out for me.  She came back later to say that Children's actually only does this for the cancer patients, but she could figure something out for Endurance.  This got back to an oncology nurse who put this together with Wendy.  Wendy told her what she knew of what Endurance had gone through and they found the corresponding beads to tell his "story."  She even added two glow-in-the-dark beads for radiation treatments, "just because they're pretty and he'll like them," she said.  (They're the ones two beads away from both sides of his name).

The above necklace is what Wendy brought to Endurance a couple of weeks ago.  For just guessing, she did pretty well.  I cried and gave her a huge hug!  The only thing is, the oncology nurse that helped Wendy do this said that since they only do cancer patients here, not to let everyone know about what she did for Endurance.  So keep this to yourselves please! Ha!  :)  We will need to do the rest on our own.  We'll have to add about 30 more beads and we'll be caught up to date!  I'd love to finish it off with a purple heart, which if I can remember correctly, it means that treatment is all finished!  Only God knows even the length of this necklace.

Thank you for letting me share this.  ~heather

Thursday, March 24, 2011

Endurance's Poem

I wanted to share with you a poem Hannah (12) wrote to me yesterday!

E is for Elijah, who gives Endurance shows;
N is for "Nice and slow," when he wiggles his tiny toes.
D is for Dilaudid, which he gets when he's fussy,
U is for Uncombed, when his hair is awfully messy.
R is for Race, with him we're running fast!
A is for "Ahhh," when I reach his room at last.
N is for Nice and Neat, he's as cute as can be,
C is for Cute, when he looks up at me!
E is for Endurance, who loves his Mama such, but she loves him even more; she loves him very much!

This sure cheered me up!

Last night our nurse asked if we would give him permission to have Endurance put on his mother's prayer group list back in Georgia!  He said he did this on occasion and knew that we believed in prayer.  What a blessing it was to talk with him about God's will and sovereignty!

Please pray as Mike fervently seeks several second opinions throughout the U.S.  on surgical options for Endurance.  He's spoken with many doctors and has sent out several pkgs with Endurance's reports and echocardiograms on cds.  I'll keep you posted as this progresses.


Monday, March 21, 2011

Getting Better!

Just a quick update to let you know that Endurance still has his blood infection, which seems to be getting better.  He is just on two antibiotics now and the doctors have slowly turned his nitric oxide off.  With that said, he is spiking a fever when he's awake, which is keeping the doctors in wonderment, hence, they've taken more blood cultures this morning.

So, he's getting better, but being watched to see if something new is brewing.

"Not that I speak from want, for I have learned to be content in whatever circumstances I am."  ~Philippians 4:11 NASB

Thursday, March 17, 2011

This is Mike's posting to our church on Tuesday.  I will post the update at the bottom of this post:

Endurance is struggling right now.  He was confirmed for a blood
 infection this morning.  He is allergic to the best antibiotic for
 this infection, but they have decided to give it to him anyway with
 doses of Benadryl to counteract the side effects, and then they give
 the antibiotic slowly

He also is being checked for a virus.  We won't know about that until tomorrow.

His oxygen saturation levels are at the lowest levels that I have ever
 seen on a consistent basis, even though we have increased his
 ventilator to the maximum support.  We are beginning, as I write this,
 a second heart medication to force his heart to beat harder in order
 to help force out the CO2.  Praise God that we have a good nurse
 tonight, and Endurance is her only patient.

Thank you for bringing Endurance before the Throne of Grace.

For Christ and His Kingdom,

Mike (for Mike & Heather)

P.S.  The Ethics Committee situation was blessed by God.  I won't
 waste your time with the details, but our Lord is good.  Romans 8:28
 definitely applies in this situation.


So much has happened to Endurance that I will probably forget things, but I'll do my best.  Endurance has a blood infection.  In fact, the Cardiac ICU's record for no infections was 163 days until little Endurance.  Sorry CICU, back to zero!  They don't know for sure yet what exact infection he has, but are giving him 3 antibiotics to fight it.  The pharmacist was quite concerned about his kidneys, so they are watching this as well.

This infection has been testing all of Endurance's caregivers, as they are having to come up with ideas on what to do to control his numbers and keep him alive.  As one doctor said, "we have a few things in our back pocket."  Today I told her that her back pocket must be pretty big as they keep coming up with stuff.

The doctors want Endurance's "sats" to be between 75-85%.  A normal person with no problems would most likely have 100%.  Yesterday his sats at best were in the low 60's and that wasn't for long...mostly in the 40's.  At one time while we were talking to the doctor, his sats starting dropping to 0!  Oh boy did that make our hearts leap.  Due to his poor sats, Endurance is now getting nitric oxide.

The doctors were also very concerned about Endurance's body trying to fight his infection and not being able to.  High concerns of him passing away.  (One of our favorite doctors said that Monday night she would go home and not worry about Endurance, yet tonight (Tues) she would be.)  So, since his sats were too low, fighting a fever, and lots of body movement, they are now giving him an IV drip of something called vecuronium (vec), which paralyzes him.  If you were to just walk in the room, you'd think he was dead.  Even his eyes don't move, yet his heart is not disturbed from this.  He is also in an upright/reclined position.

Endurance was on a "vec holiday" as they put it, today.  A small trial to see what he does when he "wakes up."  It took a bit over an hour for him to come off the meds.  He seemed to do fine for about 30 minutes.  Then his sats dropped and the nurse turned the IV back on.

Endurance is also in isolation for upper respiratory virus indications.  For this, they can give him nothing.  He just has to ride this one out.

Also, Endurance's heart has gotten bigger since yesterday.  He's has two echocaridograms.  It's rather floppy and slow.

Endurance has been given so many medications these past two days as well. 

He's not out of the woods, but we praise God that Endurance is still with us and everything that his nurses and doctors are doing seem to be for his best interest.  We see God's handiwork in all of this and clinging to Him even more.

Thank you for your prayers!  Sorry for any grammatical errors, fellow homeschooler!  My brain is quite fogged!  :)

Thursday, March 10, 2011

Six Months Old!

God be praised!  Endurance celebrated his 6-month old birthday today!  (Pictures coming soon)  I believe he enjoyed every minute of it.  His room was decorated when I got there this morning, by Wendy, part of the Child Life department.  Endurance's brothers and sisters made a birthday poster that was posted outside his sliding glass door today, so people would walk by, read the poster, and then pop their heads in to say "Happy Birthday Endurance!"  Also, the girls had made a lot of cupcakes to give to so many people that have taken part of caring for Endurance.  It was so nice to bless so many people!  It was so nice to have a "different" day around here.

The doctors really want to try to get Endurance to "eat."  They started him off this week with 1ml (1/5 tsp) every 6 hours.  He seemed to be tolerating it, though it usually takes a day to really see.  Yesterday they raised his feeds to every 3 hours.  Last night through this morning was terrible on his gut.  A lot of painful kicking and crying for hours.  The nurse checked his residuals and got 3ml out (9 hours worth was still undigested in his gut).  So, again they turned off his feeds.

In this morning's rounds, the fellow doctor said that they should still try and start it again at every 3 hours, but was up for discussing this.  Praise God that I was able to pipe in my two cents and ask to please, if they really want to try this, to try it at 1 ml every 6 hours again for a few days.  They said sure.  On a lighter side, his doctor even said he'd take a bite of his cupcake every six hours for Endurance's sake!  So now we wait.  Please pray that he'll do okay with his feeds.  His gut really needs to have something, anything, in it to "work" and get his good bacteria moving around.  Endurance is surely living up to his name.

All in all Endurance has had a good day.  May he be blessed with a good night as well.  In everything may God be glorified.

Friday, March 4, 2011

God is still in Control!

Psalm 20:7   Some boast in chariots and some in horses, But we will boast in the name of the LORD, our God.

Well, Wednesday's presentation never happened.  The head cardiac surgeon and the cardiologist that dreamed about Endurance had a (very short notice) meeting with Mike and I.  To put this quite briefly, the surgeon informed us that there is no surgery, except a transplant, that can be done for Endurance.  He, (I won't give his name) gave one more effort to promote the heart transplant, and with our decline, got rather upset and said he needed to bring our case up to the ethics committee.  We are blessed to be part of  Heritage Defense and are presently keeping them informed of Endurance's situation, and if anything comes up with this committee.

After the meeting, I felt like all hope for Endurance was gone.  I had put my trust in the Echo he had on Friday and in the doctors!  I walked in Endurance's room and just cried over him.  It wasn't until the cardiologist came in a while later and apologized for possibly getting our hopes up and that they (the medical staff, not the surgeons) are "not giving up on Endurance."  She said "You can't give up hope.  You need to keep praying for a miracle in his life."  Her words struck me.  We're going through Ezra at church and learning how God uses even the ungodly to perform His will.  And here this cardiologist's words are what caused me to drop to my knees in repentance for losing hope, not in Endurance to get better necessarily, but showing me that God still is, and always has been in control.  He knew what the meeting was about.  He knew what the surgeon would say.  He knows already, the outcome of Endurance's life!

So, in spite of the surgeon's comments, we are further pressing on, depending on God as our refuge and provider.  His grace still abounds in Endurance's precious life.

Please pray for us, Mike especially, as we don't know what lies ahead.  Who knows, but God.

I need to write this again...    Psalm 20:7   Some boast in chariots and some in horses, But we will boast in the name of the LORD, our God!!!!!!!!!