Two Updates

I have had a difficult time finding time to post updates for Endurance.  My apologies.  They get written in my head and stay there.  So, here are two updates that Mike sent to our church family, the first from Sunday morning and the second is Monday evening.  May God be praised!

Sunday...
They asked for a "3-D" Echocardiogram this week, a newer technology, and using a machine that the hospital has recently purchased.  They were "testing it out," so to speak, on Endurance.  One of the reasons, is that a Dr that had been off on maternity leave and recently came back had a dream (!!!!) of Endurance the other night, and came in that day telling the other Cardiologists that they needed to see if there was something more they could find as an option for Endurance!

 

The Lord be praised!  They will present Endurance's case again to the full Monday morning 40 member decision group within the next couple of weeks.  Maybe they will see something new, or at least make a decision to try a surgery that may be very risky, but may have life lengthening possibilities.  It is in the Lord's hands, and we thank Him for his loving mercies.

 

 

An update regarding his "presentation" before the group of doctors......the presentation will be this Wednesday!

Monday.....

Early this morning, while Sarah and the nurse where changing Endurance's linens, his PICC line (where his medicine's are given to him) came out - just came all the way out of his leg, and fell right onto the bed!  We're talking about a line that goes in his leg, tunnels around under the skin, enters into a femoral vein in his groin area, then goes all the way up into his right Atrium (part of his heart). It just came out! 

They had an IV put in his foot temporarily.  The praise is that this afternoon, Endurance successfully underwent a surgery / procedure to put in a new Central Line!  Not only were there no complications, but all of us, (8 or so?) were following him all the way down the long hallway to the surgery room to say "goodbye for now," and they let us halfway into the room there to pray for him and to see him one more time.

Due to Endurance growing to over 5 Kilos now, they were able to fit in a double lumen line - something the ICU staff are all thrilled about.  It means they can draw blood on one of the lines, without having to stop all of his meds from the other line, as they are forced to do now.  And they can also give meds at the same time that are not compatible through the same "lumen" or line.

God is Good.  Yes, He can even use a short term 'catastrophe' to turn out for the Best!

In Christ,

Mike (for all of the Holstons)

 

Thank you for all of your prayers for little Endurance.  God is using this little pumpkin in mighty ways here in Seattle.

I was looking through some pictures......

Endurance is having a good day, he is as cute as a button!  We are praising God for this little sweetpea, what a precious gift!!!
I was looking through some pictures and I thought I would share.........

January: Getting groomed for the day!

Starting out with a shampoo...

(photo credits go to David:)



He loves his hair being combed, that's for sure!

 

Sweetpea!



February: These were taken two days before he was intubated.
What a blessing to have captured these!
(we were waiting for a new C-Pap mask to be put on,
so his nurse took advantage of it and gave him a shampoo.)



 




In case you're wondering "how's he breathing?"  The clear tube behind Endurance is blowing out oxygen.  I think he was more concern about remembering his sibling's names!



A very tender moment...!





A dear friend made Endurance a "pumpkin" hat and mittens!



One of the most recent photos of our little boy!
His breathing tube is now going down his nose.
Maybe we'll get a smile from him yet!



Pictures and Prayer

Yesterday's pictures graciously taken by a dear friend Mrs. Hatch...

Underneath the breathing tube, picc line, wires, bruises, and scars is our precious pumpkin.

The mouse is one of his favorites.  He loves to feel his blanket when he's not in "sock prison."  The socks are to prevent him from pulling on his breathing tube, another favorite past time of his.

Enjoying this precious moment!

My what big eyes you have!  Endurance is fascinated with cameras!

Prayer....

These past couple of days have been quite stressful for us.  Endurance's feeds have been turned on, turned up, and turned up even more.  Now they are turned off again.  I asked if he could be given a non-FDA approved, yet being used in Europe with great results, something called Omega-van.  It would greatly improve his liver.  And prevent damage.  Unfortunately he is not a candidate since his liver is not as bad as it's supposed to be. 

With more greater concern, I speak rather sadly on the subject of his care.  Due to our "outrageous" decision to re-intubate him, meaning taking the next step to keep him alive with a breathing tube, I was told today by Endurance's nurse that "to be honest, a lot of nurses and RT's will not take care of Endurance since they believe Mike and I are being inhumane!"  What?  Well, that crushed me more than I ever thought I could be.  Of course, now that I know that "they" have weeded themselves out, then we know that the ones taking care of him don't mind, yet I am still entangled by what she said.  

I have had other comments about our decision for Endurance's life.  One nurse told me that she would never in-tubate her children.  Another has stated, "We're going farther than most parents." One of our heart failure doctors asked in an interesting tone,  "is he really comfortable?"  and after saying that he left Endurance's room.

Are we that wacko?  No!  We're requesting that they give food and air to our little one.  Mike told me that most staff here would probably believe that Terry Schiavo's death was humane.  This is crazy!  This is real.

Please keep us in your prayers as we stand in our faith with Endurance.  God is and will be our strength!

Deuteronomy 30:19

  "I call heaven and earth to witness against you today, that I have set before you life and death, the blessing and the curse. So choose life in order that you may live, you and your descendants,"

A Quick Update

I have a quick update regarding Endurance...

Last Thursday night, sadly when we were all at dinner, Endurance was intubated (a breathing tube down his mouth and connected to a ventilator).  It was an event that God's hands were completely in charge.  The procedure went better than expected, from the doctor's standpoint.  Oh how God directs the hands of the doctors.  They gave him the sedatives so slowly due to his condition.  He came out of them quite well. 

Had he not been intubated, his nurse said that he most likely would have passed away that night or early the next morning.  When Endurance's next nurse came in for her shift in the morning, she looked at Endurance and started crying.  Mike was there and said she then took a deep breath and said she'd be fine, and then went on to her duties.  Now, nobody can convince me that this cute little pumpkin has not had an influence on the staff here.

He is showing improvment in his over-all counts and numbers.  He had a nice nap this morning with his heart rate going as low as 138.

They started his feeds again.  If this doesn't take my breath away when I hear that they want to try.  I have done a complete turn around by not wanting to push him any farther about his feeds.  So we're just watching him today.  He's been gagging a lot and needing suctioned a lot.  Also throwing up, but that happened yesterday as well, before his feeds.  So the watch to see if he'll stomach the breastmilk is on.  God is in such control of even this situation.  The nurse said they will retape his breathing tube and see if that will help stop some of the gagging.

Other than all of this, he seems to be doing "well."  You have to watch him more closely so you know when he's awake, as you cannot hear him anymore.  He used to be the loudest pair of lungs in the CICU!  He was famous!  I could recognize his cry from down the hall.  Now his room is pretty silent, except for his cooling blanket machine and the slight sounds of his ventilator.

I will have to write later to talk just about the "end-of-life" conversations we've been having with doctors and nurses.

We've been praying for God to give Endurance the best nurses that will really take good care of him and not walk out of the room much.  I praise God that today's nurse was the exact one we asked for!  God is so sweet to have given Kelly as Endurance's nurse today.  She's the nurse that kissed him and said "I love him!"

Until then, we thank you for your consistant prayers for Endurance!

February 1st, 2011

It has been a while, again.  So much happens when you live in the ICU.  To catch you up to speed, Endurance "crashed" almost two weeks ago...at 2:30 am to be precise.  They paged us and said that they were considering intubating Endurance again.  Mike immediately ran over to the hospital (I praise God we live so close to do this very thing!), and discussed with the attending doctor and decided that they would put him back on the C-PAP.  Hence, that's what he's been on since then.  Also his feeds have been shut off.

Endurance's heart rates are regularly in the 170s - 180s.  His respiratory is a bit higher now as well.  He also was diagnosed with a virus called the adenovirus or the "killer cold," which has put him in isolation for over a week so far.  Anyone who comes in his room now garbs themselves with yellow robes, masks, and gloves.  And our little ones under 10 may not see him (a new curve ball as to who goes to the hospital with Mama and who stays home).  It's been hard on "the littles" not getting to see "Dernance," as little Faith calls her little brother.

And then today...

Our little pumpkin started his day not well.  Not well at all.  Each breath was a huge tug on his lungs and rib cage.  His heart rate was high.  His saturations, something I'm still learning about, were low.  Very low.  Too low for this little man.  X-rays were taken to see if he had a collapsed lung.  No.  An echocardiogram was given to see if there was any perfusion around his heart.  No.  Blood was drawn.  Tests and more tests were taken.  I called Mike and asked him to come over right away.  He was not doing well.  Re-intubating him was discussed in rounds.  That's what Mike and I have requested if Endurance cannot under any other circumstances tolerate the C-PAP anymore.  The doctors expressed their agreement that they don't want to intubate Endurance unless absolutely necessary and if he didn't get any better, it would be absolutely necessary.  AND if they had to do it, to make sure we knew that he could die during the procedure.  He could possibly have a cardiac arrest, or not handle the paralytic drug that must be given, etc, etc.

After rounds Mike called one of our dear church elders to let him know what was going on.  Immediately the urgent prayer request was spread with a request to pray and fast if possible.  God answers prayers!!!!!  Within 45 minutes after the doctors rounded and the next set of tests were performed, his lactate level had gotten lower (the most crucial), his heart rate was lowering, his temperature lowered, and praise God, his breathing was showing much improvement.  God answered in His time, and showed me in so many ways today how He is in charge of Endurance.

I am (oh so slowly) learning that I can do nothing except with God's strength.  I am running this race with Endurance only with His strength.  Only His amazing grace.  I never really, really understood what that beautiful hymn meant until Endurance was born.  Now it's a daily walk in God's amazing grace.  And how sweet it is.

I ask that you pray for God to heal Endurance, if it pleases Him.

May God bless you!  ~Heather