The Different Faces of Endurance

I want to show you my cute little pumpkin!

Here he is on the ventilator two weeks ago. He loved to hold his breathing tube!

Here he's graduated to his CPAP!  Isn't he cute!!!!

He got an upgrade on his bed....a crib!  It's big for this little guy.

Endurance having one of his breaks off of the CPAP with just a little extra oxygen.  The yellow tube coming out of his nose is his feeding tube.  His forehead has a reddish mark on it due to the tight-fitting straps for the CPAP.  That's why his eyes are puffy as well.

David, Noah, and I enjoying a CPAP break

It looks like I'm telling him about the hospital bill, but I'm really telling him about his brothers and sisters!!! 

Thank you for your continued prayers for Endurance.  He has a long way to go, but it's a step in the right direction by having him breathe without the use of the ventilator!

Hello!

It's been too long since our last posting.  I do apologize!  A lot has happened since then...

#1 - Endurance has been extubated!!!  No more ventilator!  We're praying that this will be permanent.  He is now breathing with the help of CPAP.  He's been doing so well that he gets "breaks" using a hi-flow tube three times a day for an hour each time.  Yesterday I even got to hold him with nothing connected to his nose!  I held a hose blowing 100% oxygen out, which was just laying on his chest.  He did really well.

#2 - Endurance has now graduated from an infant warming bed to a really neat crib!  It looks like those big, old, white cribs from the early 1920's hospitals, yet can weigh him, it's electrical so the mattress can move.  So his  head and chest are propped up.

#3 - I got to hold him using "kangaroo care!"  Quite modestly so Mike and little sister Faith could come back in the room.  It was so neat!  He fell asleep in my arms.  He seems to like doing that!

We're moving to another room again.  I see I have a hard time with changes.  Moving to different rooms makes me cry as though I were being told his heart is getting weaker.  Part of our sermon at church last week talked about anxiety, and how some people don't appreciate something until it's not there anymore.  Changing rooms gives me that same anxiety which I need to work on.  I always like the room Endurance has after he's moved out of it.  I'm trying to get over this.  It seems so silly and completely minor to what we're dealing with, so please bear with me.  Philippians 4:11 - "Not that I speak from want, for I have learned to be content in whatever circumstances I am!"  We have Amanda as his nurse today!  It's a good day...

Thank you for your prayers!!!

Psalm 135:5-7

    ⁵For I know that the LORD is great
         And that our Lord is above all gods.
    ⁶Whatever the LORD pleases, He does,
         In heaven and in earth, in the seas and in all deeps.
    ⁷He causes the vapors to ascend from the ends of the earth;
         Who makes lightnings for the rain,
         Who brings forth the wind from His treasuries. 

Endurance had a really good day today!  The last time he had a good day like today was over two weeks ago, but that was after a surgical procedure, two blood transfusions, and pain meds.

This morning's really good day was so different and better!  All day yesterday he was running a fever around 103.  He was given tylenol.  During the night his nurse only gave him tylenol and no pain meds.  In the morning when the head attending cardiologist Dr. Baden, came in, Endurance's fever had broken, his heart rate was in the low 100's, and he was completely resting comfortably!

This is how his whole day went.  They even lowered one of his ventilator settings for him to breathe a little bit more on his own and he did great all day!

Each time the different doctors came in his room they were so bewildered yet happy that Endurance was doing so well.  Lot's of smiles today!

By the way, we had two birthdays today!  My dear husband turned 43,  and Endurance turned 10 weeks old (Happy Birthday sweethpea!)  Our dear friend and church elder, Brett, suggested that we celebrate each month of life, each week of life, each day of life!

Let God be praised!

Hello!

Endurance's day started off as usual, getting highly agitated, heart rate going over the 200s, etc.  In fact, during rounds this morning the doctors agreed to raise his doses of morphine and adavan (this is supposed to calm him).  I was sad about this.

Endurance gets extra pain meds and other various meds through a central line called a "Broviac" that was surgically placed in his chest about a 6 weeks ago.  I was told that it's supposed to last approx. 9 months.  It has stopped working for some reason.  He had an ultrasound this afternoon to see if there was a clot in the line or some other obstruction.  Nothing much was found.

In the mean time, to be able to get Endurance's extra meds in, a central IV line was put in his foot.  OUCH!  But praise God, his meds went straight through and he has been a different baby ever since!  I wish I could say he leapt out of his bed, but that's not the case.  Yet, his coloring that seems to be always off, is great!  When he's been awake, he's been calm and looking around.  His heart rate has been around 150 while sleeping and 120 awake!  Oh what a difference!

Tomorrow Endurance is mostly likely going to have a procedure done in the IR to remove his broviac line that's not working and replace it with a new one.  Please pray that all goes well!

Oh, I wanted to mention what a joy it is to have nurses that Endurance has had come to visit him.  Today his favorite nurse, Amanda, came for a visit as well as two others.  I pray I can be a godly witness to everyone that comes in his room.

God is Good!

(Saturday night)
I got to hold Endurance this afternoon!  He was doing quite well this morning so in the afternoon the nurse and respiratory therapist helped transfer Endurance to my lap.  I enjoyed a little over an hour of holding him.  He fell asleep and slept pretty soundly, with his heart rate going down to the 140's.


After my holding him, he had quite a few unexpected challenges that required immediate response from quite a few people.  I am amazed how quickly people rush over to help patients in trouble.  Everybody kicks into gear and works like a team.

Endurance's heart rate went up over the 200's, his breathing tube's tape came off, and his coloring became very mottled.   The nurses gave him more morphine and a paralytic drug to stop him from moving so the R.T.'s could retape his mouth tube.

Endurance kept on kicking and moving his hands.  He just wouldn't stop moving.  They called a doctor in to see what might the matter be.  They were so concerned about his coloring.  The doctor didn't know either and ordered an x-ray to see if it would show something.

Meanwhile, Endurance finally settled and the r.t.'s did their job.  Nothing of concern was found on the x-ray, and praise the Lord, Endurance's coloring started to improve and his heart rate went down!

God ended our eventful day with our favorite nurse Amanda coming on duty as Endurance's night nurse.  We are always blessed when she's Endurance's nurse.  Before her shift has ended, Amanda always makes sure that our little one is "done up" somehow.  Whether it be with a hat and booties, all of his linens with a matching theme, a bath and a onesie put on, etc.  We've already invited Amanda over to our home for dinner when the Lord sees fit to have our family all back together again.

Mike and I thank you so much for all of your prayers.  God is so good, isn't He?

Psalm 145:8-9
The Lord is gracious and full of compassion, slow to anger and great in mercy.  The Lord is good to all, and His tender mercies are over all His works.

This is Endurance

Let me briefly tell you about Endurance so you'll know his story...

Endurance Jonathan Holston was born on September 10th, 2010 with a congenital heart defect called Critical Aortic Stenosis /Aortic Atresia, causing his left ventricle to swell, leading to dialated cardiomyopathy, which basically the left ventricle was huge and not working.

On his second day of life Endurance was taken to Mary Bridge Children's Hosptial in Tacoma.  He had two surgical procedures called an atrial septostomy and a balloon aortic valvuloplasty.   Three days after the surgery, the head cardiologist advised Mike and I to either proceed with "comfort care," meaning let him die "peacefully," or to transport him up to Seattle Children's Hospital to investigate the option of heart transplant.


The day after our arrival to Seattle Children's, Endurance (a whopping six-days old!) had his second valvuloplasty.  It was another success that we praise God for!


A week later, realizing that the previous surgeries would not be enough, we were referred to the heart transplant team.  During this time, and praying for guidance, the Lord led Mike to several Godly men for advice.  Also, by the hand of God only, we listened to these very awesome, informative cds on the exact topic of brain death and heart transplants.  By the way, if you have not listened to this conference or have never heard of it, we highly recommend that you do!  You'll see how we've all been misinformed.  Mike also found a page online that reiterated the newly redefined term of brain death as Dr. Gill and Dr. Payne had described on the cds.  Mike and I made the very difficult decision to not proceed with a heart transplant for Endurance.  Onward ho!


We then moved forward with a hybrid palliation stage 1 operation when Endurance was 26 days old.  This procedure coincides with patients that have hypoplastic left heart syndrome, yet was the best option for Endurance.  It consists of three procedures: pulmonary banding, a stent placement in his PDA, and a more agressive atrial septostomy.  This surgery allows us multiple options, if God wills, when Endurance is 5 or 6 months old.


So here we are with Endurance, being 62 days old.  His days are up and down, good and bad.  We're still praying for his left ventricle to work.  We're praying that his right ventricle, which is getting weaker daily, to improve.  We're praying for God to sustain his life, if He wills...  

 

James 4:13-15  

¹³ Come now, you who say, “Today or tomorrow we will go to such and such a city, spend a year there, buy and sell, and make a profit”; ¹⁴ whereas you do not know what will happen tomorrow. For what is your life? It is even a vapor that appears for a little time and then vanishes away. ¹⁵ Instead you ought to say, “If the Lord wills, we shall live and do this or that.”

First post to the blog!

Hello!

On behalf of Endurance Jonathan Holston we have started a blog to "journal" as frequently as possible, this time in our lives!

Thank you for your prayers and support!

Gratefully,

The Holston Family