Day 327 and a HOME RUN!

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Charlies blood cultures are negative!  Which means our boy can come HOME tomorrow!  Praise God!  It will be a big day but Charlie’s home nurses are ready!   (And so is his family)

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Psalm 28:6

” Praise be to the LORD, for he has heard my cry for mercy. ”

 

Love, Sarah for the Fines

 

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DAY 325: A big nap

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Charlie is resting peacefully today.  His O.R. Trip was a great success and we were able to remove his compromised central line easily, place a PICC line, and take a peek at his intestines.  The doctors were pleased with what they saw in his intestines.  They took a small biopsy to see if they could find any more answers for his diarrhea, which will come back in about a week.  Everything else looked well and they saw great indications of healing that has already taken place.  We are targeting to leave here Monday as long as his blood cultures remain negative through Sunday night.

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I was turned towards praise as I walked past this beautiful flower garden yesterday.  Praise for the beautiful flowers but more so with the flooding memories of this being my favorite spot 11 months ago when we first got here.  11 months…my how fast and yet slow time has moved.  The praise was an eruption of gratitude to the Lord for sustaining us on this journey.  He has been immeasurably faithful and merciful to a mother that needed immeasurable doses of both -that could only have come from HIM.  There were several points at which we were given the option to quit or in my weakness I was tempted to quit.  He gave us the strength to press on, and press on, and press on.  I don’t know all the treasures that this trial has and will produce, but we look into Charlie’s eyes and we are all  sure that God wanted us to press on through all of those hard times.  I am not sure what all the pedestrians were thinking as I sang to the Lord out loud on the sidewalk- He is worthy of our praise no matter where we are or what we are doing.  Don’t be shy, don’t hold back, this world needs to know the greatness of the One and True Living God!

But one thing I do: Forgetting what is behind and straining toward what is ahead, I press on toward the goal to win the prize of God’s heavenly calling in Christ Jesus.  Phil. 3:13-14

PLEASE PRAY FOR:  NO INFECTION; NEGATIVE BLOOD CULTURES; HEALING FOR SMALL INTESTINE; SMOOTH TRANSITION HOME

DAY 324 – Prayer Request

Charlie is bright eyed and playful this morning.  He loves mornings!  He is so strong and rolling all over the place to get to his toys.  He loves to grab his toys and put them in his mouth.  No teeth yet, but they are knockin’.  The decision was made to take out Charlie’s Broviac central line in the OR and place a new PICC line until we can place a new Broviac central line in about 10 days.  His line seemed to be holding onto some bacteria and had already been repaired twice.  We felt it was too compromised to go home with as his nutrition depends on it.  If the blood cultures they draw after the placement are negative at 48 hours (Sunday evening) then we can go home on Monday.

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PLEASE PRAY FOR:  SUCCESSFUL PROCEDURE; NO SIDE EFFECTS FROM ANESTHESIA;  NEGATIVE CULTURE RESULTS FOR INFECTION POST-OP; PROTECTION FOR CHARLIE; MONDAY HOME!

Lamentations 3:22-23 The steadfast love of the LORD never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness.

DELAYED…Blessed be the name of the LORD!

Well…as I was driving all of the contents of Charlie’s room home I got a call that a very rare occurrence had happened.  Charlie’s blood cultures turned up positive after the 48 hour mark- which is very unusual.  Now the doctors are deciding if we need to surgically remove and replace his central line to clear the infection safely.

Needless to say, we are all feeling a little sad.  We were so excited and longing to have Charlie home.  Well, we are thanking the Lord for yet another extended opportunity to exercise patience and develop our faith and trust on yet a deeper level.  Blessed be the name of the LORD- when He gives and when He takes away.  He is GOOD.

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DAY 322…DISCHARGE!

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Charlie has been in the hospital for 322 days!  BUT…tomorrow (Wed. 7/27) Charlie will get in his car seat, go for a ride, and arrive at a home!  HOME!!!  A place Charlie has not been since he was 6 days old.  We are elated, so excited to bring him home and integrate this little treasure into our family life at home.  Last night’s FaceTime with the family was SO precious.  Charlie LOVES his family and lights up as they talk to him, sing to him, and just converse as a family.  Thank you Lord for FaceTime!

Thank you for ALL of your prayers, the meals, the love, the support, the laundry washing, the outpouring of your care upon us is simply unbelievable!  We love you all and may God richly bless you for your sacrifices “unto the least of these.”

A Nourishing Weekend

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After a few exhausting weeks of preparing home for Charlie, a line infection, antibiotics, continual delays in home going, a broken line that would require surgery to replace if not successfully repaired, positive after positive after positive blood cultures…this mama was exhausted.  Charlie’s precious grandma’s took over the Charlie ship for the weekend so that  our family could spontaneously escape to the mountains.  We planned to go for 1 night but extended it to 2 when we discovered Charlie wouldn’t be able to come home Monday.  It was such a sweet time of biking, swimming, singing, worshiping our King, resting, wading in the river, enjoying God’s majestic mountains, and just being together.  Thank you grandma’s!!!  We all missed Charlie deeply, but were thankful that he was being loved on immensely and in good hands.  We enjoyed watching a little girl with DS in the swimming pool and seeing a baby with a trach and pumps on top of the mountain!  Just a nice little encouragement.

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We had our first negative 48 hour blood culture just an hour ago.  This is a huge praise!   If the next set of results we get tomorrow evening are also negative we will be heading home Wednesday with our baby boy!

PLEASE PRAY:  NEGATIVE BLOOD CULTURES; PROTECTION FOR CHARLIE FROM THE NECESSARY INTERVENTIONS; PERSEVERANCE FOR OUR FAMILY; WEDNESDAY DEPARTURE; SMOOTH TRANSITION; HEALING FOR SMALL INTESTINE.

Wait for the Lord

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It has been a long couple of days.  Lot’s of consults with different medical teams, lots of tests, lots of everything that goes with living in a hospital.  We are so grateful for the care.  I am grateful for the 30 people that arrived within a minute of a code blue to another  baby’s room today.  There is a lot of preparedness and skill in handling emergencies here.  There are some beautiful people who just love life and love helping people get well.   There is a nice view of the mountains out my window.  There is a precious little boy in his crib who endures so much in days like today and then drifts off peacefully into a sweet slumber.  There is so much to be thankful for.  Even so…we want to go home.  God knows that.  We won’t be here 1 minute longer than He intends.  But until that moment comes, we wait.

Charlie has not had a negative blood culture yet which means that we are still treating him for infection until we can get negative cultures.  If we cannot get negative cultures then ultimately we may have to have surgery to replace his central line.  Meanwhile, his output has increased dramatically and so we are running lots of tests to rule out things.  So far all the tests have shown no problems.

PRAYER REQUESTS:  PROTECTION FROM HARMFUL EFFECTS OF ANTIBIOTICS, GOOD KIDNEY FUNCTION, NO INFECTION, DECREASED OUTPUT, STABLE ELECTROLYTES AND SODIUM, HEALING OF G-TUBE SITE, PATIENCE AND ENDURANCE FOR OUR WHOLE FAMILY.

Take Heart Little Ones

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Take heart little one’s.  I know there is only one link to the “Charlie coming home chain” left today…but God is asking you to wait, to trust Him, to lean on Him, to believe Him that He works all things together for good for those who love him.  So today, focus on LOVE-ing HIM!

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Mama’s heart aches too, mostly for you sweet little one’s.  You have been so patient, so prayerful, so understanding, and now we are being asked to do it a little longer.  I am so thankful for the work that God is doing in your little heart’s.  If I could change the hard-ness of this trial for you I would- in a heartbeat, but that would not be God’s best for you.  So, alongside you today I will keep climbing, keep sitting at Jesus’ feet, and keep praising Him for his goodness to us- even in this.

Charlie will need to present 48 hours of negative blood cultures for bacteria to be safe to head home.  It could still be this week possibly…but we will wait for the Lord.

Praise God

Thank you to all you faithful prayer warriors!  Our gracious father has heard…Charlie’s fever broke a couple hours ago and he woke up chipper, smiling, wanting to play, and comfortable.  We gave him a bath and did all of his night time cares- just drifted off into peaceful sleep.  Praise Jesus!

These fevers are of very serious concern for Charlie until we can take out his central line.  A fever can (worst case) indicate a central line infection or bloodstream infection that can be devastating quickly.  SO…please pray for Charlie’s small intestine to heal and receive food so that we can remove his line.

Prayer for Charlie

imageshort post due to my one fingered typing from phone option(:  I am snuggling Charlie as he sleeps.  He spiked a fever last night and we have been prayerfully and carefully considering the best course of action.  He has two big infection risk factors:  central line and trach. The infection is presenting as if he has an infection in his airway which is easy to treat.  Please pray that it isn’t a line infection and that he feels better quickly.  Also the standing prayer request for his small intestine to heal remains.  We can’t lose the central line until his small intestine heals.  He is such a trooper, so sweet and snuggly.  God is so faithful and continues to give wisdom, strength and hope.  Just when I think I have nothing left, He pours out more grace, more courage, and more strength.  He is so amazing!

Still aiming at a Tuesday discharge as long as he is stable with this infection.