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This morning, at 72 hours Charlie’s blood cultures were (and still are) negative! Praise God!  Charlie will go to the IR (Interventional Radiology) at 12:30 today to get his short IV line made longer and put all the way to his heart.  If all goes well we will be discharged early this afternoon, hopefully right after the surgery.    Thank you for all your prayers and love for our little Lion!  He looks great and is requiring very minimal oxygen

It has been a blessing to see some of our old NICU friends today.  There is one family with a DS boy named Charlie, and his mom’s name is Debbie, its a fun similarity.   Another little DS girl we know just went down for surgery to get an Ostomy and a few other things, she has a very sweet mom and dad that love her so much.  We also saw a close (NICU) friend who’s one year old was sick. We love reuniting with these friends, it its fun to see how far they have come, and how much they have grown!

Thank you for your continued prayers for Charlie’s gut to heal and absorb nutrients well so we can move towards removing this central line.

Sarah

 

 

 

 

 

 

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Surgery

IMG_3374.JPGCharlie has been so amazing!  He is happy, playful, full of smiles, and SO cute!  We were planning to go home today but the infection in his central line keeps persisting.  The plan is to try to remove it the line tonight, and put a temporary line in until his body has a chance to heal, then they will put a new, more permanent line (like the one he has now) back in.

Please pray that…

The surgery would go smooth, and that the yeast would leave with the old line.

We could go home soon.

The doctors would start weaning his TPN (IV nutrition) so we can permanently remove the line.

Thank you all for praying!  We are trusting the Lord, and we know He has a plan for Charlie and our family.

Sarah

 

 

 

 

 

God Is Good- All The Time

God IS good all the time, even though we have been re-admitted to “Hotel Childeren’s” due to a fever, we know it is in God’s perfect plan.  Charlie developed the fever early on Wednesday morning, and because of his central line we have to go to the ER if his fever goes over 100.4 degrees (38.2 C).  It was hard to have to bring him back to be admitted, and it was especially hard to leave the children early in the morning knowing that would wake up to find Charlie, mom, and I (Sarah) missing.  However, God has been with us the whole time, he has put peace in the hearts of his little Fine children, and he is faithful to give mom wisdom, strength, and courage.  I couldn’t even imagine what this would be like without Jesus, who is THE ultimate Healer, Physician, Counselor, Decision-Maker, Father, Friend and much more.  When we got to the ER they drew blood from Charlie’s line to culture and see if there was any infection/bacteria.  Charlie’s fever broke later that morning, but he had spiked four more after that, the last one being at 4am yesterday, we’re thankful he has not had one since then!

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Yesterday morning at 24 hours (since his 1st labs had been drawn) one of the tests showed yeast in his blood. So far it is only showing up in his blood, not in the heart, eyes, or ears, or anywhere else- Praise God! As you all know we were here for eleven months the first time we came, so mom knows how this hospital system works.  Slow.  But many things were accomplished yesterday, thanks to JESUS!  All day yesterday we  had doctors and nurses coming in to check him such as, Pulmonology, cardiology, opthamology, GI, and wound care, he has had his eyes tested, an ECO done on his heart, labs drawn, lots of “big picture” Doctor visits, and many more.  It was a very long day for all of us, but the Lord is taking care of us. There have been a lot of decisions to be made (some of them being hard), but our El Deah (God of knoweledge) is in control, and we will trust him to provide for Charlie’s needs! Sometimes there are fears that can come sneaking in when we are down, or not on guard.

Every day since we have been here, the Lord has put little things in my path that make me smile, such as a trisomy 21 girl making my omelet yesterday morning, or a very elderly gentleman laughing hysterically at a sign that said “Orange you gonna wash your hands?”, or seeing good friends that work here at Children’s, I’m just so thankful to the Lord for His goodness to us in that way. I loved God’s humor through that laughing man 🙂

Ever since Charlie first went to the hospital,  I have felt a call to the medical field, and maybe more specifically nursing.  I love taking care of Charlie, wounds, stitches,  blood, and all that type of stuff. So, I know the Lord has blessed our family greatly by giving Charlie to us and forcing us to do things that we otherwise never would have done, and learn things that we otherwise never would have learned. He gave us an AMAZING little guy to help stretch our faith, trust, perseverance, love, courage, and boldness.  It is  Amazing to think how amazing and Awe-some our God really is!  It makes me SO extremely humbled, and thankful that HE died on the cross for all of my sins, and that HE, the King of Kings, and Lord of Lords would come down to earth and DIE… for ME!   He has been good to lead me (and us) through this, and teach me many things as we are and have been in the hospital.  It’s a blessing to be able to have so much contact with people here, and to be able to share the goodness of God with them.  As much as I don’t like Charlie being here, I love learning different things from different doctors and nurses about their skills and expertise.
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Dad was in SD hunting with David, Daniel, Papa, Nonie, Uncle Paul, Calvin, Mark, and some more good friends when Charlie got sick.   We are looking forward to their homecoming tonight!

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Yesterday morning the Lord blessed us with a beautiful view out our room window, and a beautiful sunrise! (This picture doesn’t do it justice!)

Thanks for all of your prayers!  Here are a few prayer requests:

-That the yeast in Charlie’s blood would be easily and quickly taken care of

-That yesterday mornings cultures would be negative at 48 hours, which would be Saturday morning. It would be miraculous if they stayed neg. until then. Then we could go home that day!

-That we could wean off charlie’s TPN so that the central line could be removed, which would mean no more infections, or ER visits with any fevers.

-That we would be able to bring Charlie home ASAP

Thanks for praying for our little trooper!  More updates to come.

Sarah