Update for Endurance

The following post is the prayer update I just emailed our church.  One thing I need to add though is that Nationwide Children's Hospital provides the opportunity for friends and family to send ecards to patients and then they get delivered every morning in the special "mail."  Will you please send Endurance one, or many?  You can do it as often as you like!  The info that you need is his name, unit, and room number (Endurance Holston, CTICU, rm#7).  Here's the link:  send ecard  Thank you!

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5-18-2011 update:

Endurance has had some setbacks this week since his arrival here in Ohio.  Endurance has pneumonia.  He was already on antibiotics for a different infection, so they've added a couple more.  Once the test comes back as to which type of pneumonia it is, they will get more specific with antibiotics and take off the unnecessary ones.  They have his crib mattress at a 30 degree angle to help his lungs.  Also he lays on his stomach for 24 hours and then on to his sides for another 24 hours, switching sides every 2 hours.  And lots of suctioning through his breathing tube!

We want to let you know that Endurance's surgery is scheduled for next Tuesday morning.  The surgery will take 6 - 8 hours.  Mike and I spoke with Dr. Galantowicz again today for quite a while.  He says that speaking to his team again (they do this daily, with more intense meetings about each cardiac patient on Wednesdays and Fridays), they are encouraged with how Endurance is doing and how the surgery will go.  Although he's had some setbacks, they really have nothing to do with his heart function which they're happy about.

Dr. Galantowicz drew out for us what Endurance's heart and lungs look like and what he will be doing.  He then explained to us that he goes over in his head, thoroughly about 10 times, how he's going to do a specific surgery on each patient.    He's said he's gone through Endurance's surgery 6 times so far and the last two have been phenomenal!  Mike and I broke out laughing when he said this.  I had to tell you.

We ask for specific prayer regarding Endurance's pneumonia to progressively get better, and for Endurance to stay stable.  On a lesser note, our van is in great need of prayer, but God got the family to Columbus!

Thank you for praying through many seasons for Endurance!  May God continue to be glorified through this little boy!

Columbus Ohio!

Whew!  It has taken me several days to post this.  We're here!  Oh thank you Lord for blessing Endurance and our family with this opportunity!

Endurance arrived safely in Columbus last Wednesday.  (I am hoping to post pictures of Endurance's learjet trip!)  They expected him to have a meltdown upon arrival to the hospital, which he did.  It took a couple of days, but he made a comeback.  Now they've been switching medications, turning some off, adding new ones.  They have been quite aggressive here, which is reassuring to Mike and I.

Endurance had a CT scan and an MRI yesterday.  They did not find anything to stop his surgery, Praise God!!!

We are presently staying at a hotel 6 miles away that accommodates the eight of us.  I figure out each morning who will go with us and who stays behind.  This hospital is a bit different with siblings...no one under 12 can come into Endurance's room.  This has been quite an adjustment for David (10) and Elijah (8), who were used to coming and performing "shows" at Endurance's bedside, with his mice and other creatures.  They will not get to see him until he is well enough to go to the cardiac "floor."

Endurance has had many, many in-hospital visitors!  A speech therapist (I'll explain later), massage therapist, physical therapist, urologist, hemotologist, and a neurologist.  And that's just today!  One interesting thing that the hemotologist said, is that she is from Nigeria and the name "Endurance" is quite popular there!  Wow!

The "visitor" Mike and I have been the most grateful to meet is Dr. Galantowicz, the surgeon who will perform Endurance's surgery!  A very pleasant and humble man.  He has come by several times and has stated that his team is quite confident that Endurance's surgery will go well.  We are unsure when this surgery will be, yet the surgeon said as soon as possible.  Endurance will tell us, so to speak.

We rest in His care and are so grateful that He is in control.  Thank you for your prayers!

On to our Next Adventure!

Everything is going on so briskly around here lately!  This will be a quick update as it is 2:00am and I'm a bit tired....

Endurance has beat the odds again is is practically recovered from his virus and two infections.  He is breathing on his regular ventilator at regular settings.  All other machines and gas tanks have been put away again!!!  Thank you God!  I am at the hospital right now and just came out of his room.  He is back to holding his mouse's paw and feeling his blanket for comfort.

Columbus here we come!  As of last Friday, the ICU is setting Tuesday as the transport day to Columbus Ohio, Nationwide Children's Hospital!  Yahoo!  I will be going on the ambulance lear jet with him.  Please pray for my nervousness to subside.

It took two days, yet with very loving brothers and sisters we have emptied our home here in Seattle.  Lots of runs to the thrift store to joyfully make donations!!!  Lots of trips to a small storage unit with just bare necessaties.  And our friend will be taking one or two trips to the dump for us with the rest.  God is good!  I've seen my children grow in just this experience alone.  Their brother means more to them than their material objects.  Oh thank you Lord for this lesson.

Mike and Endurance's seven excited siblings will be leaving early tomorrow (or should I say in a couple of hours) for their trek through the northern states and Lord willing, arrive in Columbus sometime on Wednesday.  Please pray for safe travels in a very stuffed van!

We're not exactly sure about lodgings yet, and again I'm thankful that God knows exactly every detail already.

Thank you for your prayers.  I wish I could tell you all face to face how much the Holston's appreciate each one of you and your prayers.  May God bless you this week!!!!

~Heather, for the Holstons

Prayers Needed

Endurance came down with a virus last week which is a common cold to us healthy folk, yet can be tremendous to someone with a compromised immune system.  Back in isolation!!!  He also has tracheitis which was found on Friday.  His lungs stopped ventilating the CO2 out, and they had to put him on a different ventilator in order to keep him alive this weekend.  This is the last thing they said they can do to help him.  The nurses have been getting plenty of secretions out of his lungs since he's been on this new ventilator, which has helped greatly.  It's amazing to watch this machine.  It's giving him 660 breaths a minute and therefore vibrates him.  It's quite loud and sounds like a model T Ford.

This morning one of his doctors said that saying that Endurance is "stabile" is an overshot.  But he has not gotten any worse either since Saturday.  We thank God for this so much!
Please pray that we can quickly get him off of this oscillating ventilator, as Endurance has to be completely paralyzed the entire time he is on it.

On top of this, Friday and Saturday was our statewide Christian Heritage Home School - Family Discipleship Conference.  God is amazing to have made it possible for us to go to most of it.  We were truly, truly blessed by the sessions, even though we had to leave early and rush back to the hospital Saturday afternoon.  God has blessed us with amazing brothers and sisters in Christ that after finding out our situation, packed their families up (meaning leaving the conference early too), came to the hospital, blessed us with dinner and fellowship, and watched our children so we could be back with Endurance.  Thank you!!!

Our entire family is blessed by all of your prayers and encouragment as we continue on this race!

Endurance is Leaving Seattle!

Dear praying loved ones,

Mike sent this wonderful update regarding Endurance to our church and I cannot think of anything more to add except my deepest appreciation for the same two doctors Mike already has, Dr. Lewis-Newby and Dr. McQuinn.  God has used them mightily!  Huzzah!

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From Mike, April 26, 2011...

Dear Brothers and Sisters in Christ,

 

Today we are praising our Saviour!

 

On February 2nd they were telling us to remove life support.

That Endurance was not happy.  He didn't want to be

reintubated, they said.  He wasn't comfortable.  He could

die in the intubation process.  Just let him go 'peaceably.'

 

Now we will be flying out of Boeing Airfield on a Med-Jet.

To go to Nationwide Children's Hospital in Columbus, OH.

 

Both Dr. Galantowicz in OH and Dr. Burke in Miami are both

willing and able to conduct the needed surgery for Endurance.

 

What a difference.  Instead of having to decide to let him die

or to reintubate, now we had to make the really difficult

decision of which surgeon to send Endurance to!  

 

Both of these gentlemen are top tier.  And their teams are also.

Heather and I are indebted to these two teams for accepting

Endurance, when fourteen others said 'No,' five others haven't

got around to presenting him yet, and one other said he'd do 1/2.

 

Columbus is only a 4 hour flight for Endurance, rather than

six to Miami.  Time in the air while intubated is crucial.  The

team here is saying that if a miracle worker [like Burke] fell

out of the sky and said, "I'll do it!" (which is what Dr. Burke

did!), and Dr. Galantowicz was the other option, they would

still go to Galantowicz simply based on the number of times

he's done this exact surgery.  Babies come to him from

around the world for this surgery.  He created the Stage One

Hybrid that is used around the world today.

 

I might add, we are also indebted to the fine staff here at

Seattle Children's.  If it wasn't for Gordon Cohen and Tom

Jones doing the Hybrid, and the amazing Cardiologists,

both regular and  Interventionalists, the attending Intensivists, 

the jolly good 'fellows,' the nurses and RT's, the nutritionists,

pharmacists and PACT team members, and yes, even the

Ethics Committee members - if not for these blessings from

God, Endurance may not be alive today.  And a special

note of thanks to Dr. Tim McQuinn, who helped me when

everyone else in this building gave up on us.  And to Dr.

Lewis-Newby, who had the dream about Endurance and

came in the next day and started things moving.

 

God is so good!  We still have some bureaucratic red tape to cut through that may take another 3 days to 2 weeks before we

leave, but it's happening, the Lord Willing!  Now, we will be

making all of the various logistical decisions regarding who goes, who stays, if any, how do we get there, do we sell this 9 mpg van and get a cheaper one for the drive, do we keep a house here vacant during a potentially long recovery... ??? We figure if the Lord can take care of the Big stuff, the little things will all work out!

 

Thank you for all your prayers along this way we've come.

 

For Christ and His Kingdom,

 

Mike & Heather Holston, for all the Holstons;

Isaiah, Sarah, Hannah, David, Elijah, Noah, Faith, and Endurance

 

"And Elisha prayed, and said, LORD, I pray thee, open his eyes,

that he may see. And the LORD opened the eyes of the young

man; and he saw: and, behold, the mountain was full of horses

and chariots of fire round about Elisha."

II Kings 6:17

In the Waiting Pattern

I just wanted to quickly update y'all...

Last Friday Oregon Children's Hospital called Mike and told him "no" to our request for Endurance's surgery.

Tomorrow Stanford Children's will be presenting Endurance to their team and hopefully we will know their answer shortly.

The Columbus OH surgeon had a few more questions regarding Endurance's overall health.   We asked a specific doctor here to talk with him directly, then this surgeon will re-present Endurance to his team either tomorrow or Friday.

We are still awaiting answers from other hospitals as well.

Behind the scenes we've been meeting with a quaint woman who is now going to play a heavy part in Endurance's departure here from Seattle.  She has all of the paperwork filled out except the "hospital transferring to" line!  We've had doctors bending over backwards to help Endurance.

This is slowly becoming a reality to me.  If Endurance makes it through these high-risk procedures, he actually will be coming home!  We're not sure where "home" will be.  I can't think that far ahead!  There are so many unanswered questions about so much that it can be quite overwhelming.  I am elated that God is in control of everything and I can cast all my cares on Him.

Please continue to pray for our family.  We really appreciate your prayers!!!!

Looking Brighter

It is a gray, rainy, spring day in Washington.  But it's only what you think of it, right?  Because we're quite happy here!  Why?  A couple of reasons....

Endurance has his first tooth!    It was discovered quite by accident.  He needed suctioned, something that we're allowed to do, which is basically the same as being at the dentist and having someone put that vacuum-like tube in your mouth to clean it.  Well, I was cleaning his mouth out and this white thing wouldn't get off of his gum.  Hence, I felt it and got a surprise!!!  Sometimes I forget that while he's living in the ICU, he's still a baby and I should except baby things!  So now when he's crying or agitated, we have to add "possible teething" on his list.

Next item...

So far, Endurance has two teams of surgeons that would be honored to perform his Comprehensive Stage II surgery!  Yahoo!!!!  The Children's hospitals in Florida and Ohio have both said yes!  We're still waiting on other hospitals' responses.  Some have come back saying no.  Portland OR will present Endurance tomorrow morning to their group of cardiac specialists.  Stanford Children's (CA) will do the same next Wednesday, Lord willing.

God is so good.  I cannot thank Him enough for using Mike in so many ways to talk directly with all of these surgeons, regarding Endurance.  Some have even called us at home in the evenings.  I always thought that you couldn't talk directly to these surgeons, as if they were too busy sitting on a pedestal or something.  God has shown me not to misjudge people.

Our family asks for prayer for guidance in so many decisions that will be made even as soon as tomorrow.  May God be glorified in every word spoken, decision made, and detail regarding Endurance.  Thank you!!! 

Endurance's pulse can be faintly heard in his right foot now.  Thank you for your prayers!  Yesterday he did not have a good day.  He slept pretty much throughout the day.  His saturations were low, heart rate high, even while sleeping, and temperature high.  His coloring also was a dusty grayish type of color.  So they have took blood cultures to see if he is brewing some sort of an infection again.  Also he had a blood transfusion to see if this would help, which it did.  His blood count was lower than usual.

Today he is doing much better, but the doctors wanted more blood cultures taken and a urine sample to be taken.  They don't think he looks like his usual self.

We have sent out the reports to the surgeons that wanted more information and are now waiting.

Thank you again for your prayers,

Heather

Psalm 33:20...Our soul waits for the LORD; He is our help and our shield.

Endurance had a cardiac catherization procedure this morning.  All went well.  He is back in his room right now recovering from the anethesia.  This procedure's results will give the information that various surgeons have requested of Mike, who has been speaking with them back and forth these past couple of weeks.

I do ask for prayer for Endurance.  His upper right leg is where the doctor went in to do this procedure, and now they are unable to find a pulse in his leg.  He has had these interventional procedures before and the second one, I believe, is where he obtained a blood clot in his left leg (and has been on Enoxaparin ever since).  His right leg is also where his picc line is running through.

Thank you for your continued prayers for Endurance.  We so appreciate your love and encouragement.

P.S. We were blessed with a really good nurse in preparation for today.  She requested to be Endurance's nurse!  Thank you Genevieve!

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