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.
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.”
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.
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.
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 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!
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.
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.
short 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.
We were so excited when some friends of ours designed a t-shirt to help raise money for their mission organization in Myanmar. We love what they are doing in Myanmar and we love supporting them. Some of my children hope to serve and minister in Myanmar some day. Although the t-shirt is speaking of THE Lion- our God! We also thought it was a fun representation of Charlie (our lion-heart) moving home and getting better. SO to support mission Myanmar and to celebrate God’s faithfulness towards Charlie and his homecoming we got one for each person in our family. We will wear them the day Charlie comes home (July 18th). If you would like to help us celebrate God’s faithfulness and support a really great mission in Myanmar, you can order them on Amazon. The link is below:
How can you resist? If you like, you can even mimick this fashion statement with one white and one red sock!
David is also organizing a run/walk race to raise money for mission Myanmar. The race is JULY 30th at 8:15 am in Elizabeth, CO. This race will help raise support to provide the four M’s in Myanmar: Mercy, Meals, Music, and Medicine. To sign up to run or to sponsor a runner go to http://www.miles4myanmar.com. If you would like to volunteer to help with the race or have any questions, email David at firstname.lastname@example.org
In this picture Charlie was doing a really good job on his tummy lifting his head. With those cheeks, you can imagine that it is a real workout. His physical therapist is amazing and really knows how to lovingly challenge Charlie. This past week she brought another PT with her who wrote the book on gross motor development for Down syndrome children. She was very impressed with Charlie and gave us some good ideas for things we can do to help Charlie develop more strength and abilities.
Charlie has been doing very well. We are moving right along on the path for discharge. We received an infant CPR class and had fun acting out emergency situations. Charlie’s daddy couldn’t be shaken! He always was good in emergency situations. Then they put Bob, Savannah, David, Sarah, Dan, I and I in a room with our home equipment and let us figure out how to put together all of our own home equipment…it was like a Lego project- we had a lot of fun!
-THERE ARE A FEW THINGS THAT NEED TO COME TOGETHER FOR OUR HOME TRANSITION THAT ARE OUTSIDE OF OUR CONTROL. PLEASE PRAY THAT ALL WOULD FALL INTO PLACE SO THAT OUR DISCHARGE IS NOT POSTPONED BY A WEEK.
-PRAY FOR COMFORT FOR CHARLIE AS HE IS TEETHING.
-PRAY FOR CONTINUED PROTECTION FOR CHARLIE FROM HOSPITAL BUGS AND INFECTION.
-PRAY FOR OUR FAMILY AS WE EXERCISE PATIENCE IN THIS FINAL STRETCH
If you can count the number of rings hanging on our wall, you will find that we have 16 days until we drive our precious little boy HOME! YES! That’s right, we’ve been given an official discharge date, July 18th. It is quite surreal and I do keep pinching myself…our WHOLE family will be together again for the first time in 10 1/2 months. What a delight it will be. We have been busy on the ninth floor with lot’s of training, gaining independence with all the details of Charlie’s care, visiting with LIVE animals for the first time… (This is a volunteer dog that visits children in the hospital. Bob grew up with this breed and I know he will be happy to know it was the first dog Charlie saw!)
Taking tub baths for the first time…
Going to a play-group where Charlie saw other babies for the first time!…
AND rolling over- despite all of his accessories!
Charlie rolled all the way over in the night so he could view his aquarium- Thanks Tara!
PLEASE CONTINUE TO PRAY FOR GUT HEALING, LESS OUTPUT, MORE DIGESTION, WISDOM AND PROVISION FOR OUR NEEDS AT HOME.