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I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. Psalm 139:14

The Little Boy in Room 22...


I am so ready to be able to write a good update!  We know God has a plan and his timing is perfect, so for now we will sit back and wait.  Last night, Carter's tummy became extremely distended.  This of course made him uncomfortable and required him to have more medication.  We are fortunate that I actually flush Carter's intestines for him to go to the bathroom.  Last night, I flushed them and got very little results.  This morning I flushed them and the same thing.  They decided to give Carter Miralax to see if that would help move things through and still no results.  I am praying that tonight when I flush his intestines, he will have A LOT of results!!! The pain medication and the fact that he has to stay still have slowed his already slow bowels way down. They think he is starting to develop an ileus (a bowel obstruction).  We are praying this is not the case!  After Carter vomited four times this morning, they decided to do an X-ray.  All they could tell was Carter's bowels looked inflamed.  He has so much hardware now (external fixators and plate holding his pelvis together) they could not tell what was what.  Anyone that has followed Carter's Journey knows the Journey we have taken with his bowels.  For anyone that doesn't know we spent 7 out of 12 months last year dealing with complete intestinal failure.  We brought Carter to Johns Hopkins last year, and they were unable to help him.  He was eventually airlifted to Cincinnati Children's Hospital where cutting edge technology saved his life.  So as you can imagine we are EXTREMELY worried about his intestines.  The good news is he is currently still tolerating his tube feeding through his J-tube.  We will just see what the next few hours bring.

We were up every 4 hours last night. Our poor baby… He was so uncomfortable.  The thought of holding him and rocking him went across my mind every time the nurse left the room.  The fact that he is tied to the bed, and the fact that we NEVER want to go through this again stopped me.  Everyday I tell myself I am one day closer to holding him.  They moved Carter to a new room in the PICU yesterday.  We moved from room 30 to room 35.  Everyone is starting to come to the reality that we are going to be in the PICU for a while, so they put us in a much quieter and larger room.  Carter has not been a fan of light or any stimulation since we started all of the medications to keep him pain free and calm.  You can only imagine how he liked being rolled in his bed down the bright hallway.  Everyone laughed because once he was able to hold my hand, he used his other arm to cover his eyes.  He was not too happy about the move, but Brandon and I are.  Our new room is much more quiet, and it is big enough to move around in.  

I know this is getting a little long, but I have a story I have to share.  Brandon and I pass a room in the PICU everyday.  You have to remember all of the rooms are private, but have glass doors.  If the curtains are not pulled you can see directly into all of the rooms.  When we first arrived, there was a little boy’s room full of visitors.  You could see the pain in all of their eyes.  The little boy was not on a ventilator, yet he would look around the room, but you could tell he was extremely sick.  Days passed and we continued to pass the room.  Each day the little boy grew more ill.  He was placed on a ventilator, and now the visitors have seemed to slow down.  There has not been a day we have passed that his parents have not been right at his bedside.  Most days they are crying holding onto his hands. We have seen them in the hallways crying. Both parents eyes are almost swollen shut from crying so much.  Brandon and I have both felt drawn to this family.  A few days ago Brandon passed and the Dad was hardly able to hold himself up in the hallway.  Brandon said “You could see the hurt and pain in his eyes. He was sobbing and completely heartbroken.”  Brandon walked up to him, hugged him and told him that we were unsure of what they were going through, but we were praying for them.  The man told Brandon “thank you” and Brandon continued walking to our room.  A few days passed and the man saw Brandon in the hallway.  He told Brandon that it meant so much to him to know that they were being prayed for.  Brandon told him if there was anything we could do to just let us know.  Well two days ago Brandon passed the Dad in the hallway talking with a Doctor.  Brandon knew what the Doctor was telling him was not good.  The Dad later found Brandon and told him that their little boy, who is Carter’s age, would soon be going to heaven.  Our hearts have been so heavy for this family.  We have no idea what is going on with the little boy.  He could have been in an accident, or he could be in a situation like us.  He could be coming here to have a life-saving operation.  There are so many families just like us here at Johns Hopkins. Families that have traveled across the United States, or even the world, to give their child the best shot at life. The one thing we do know is, that this family needs prayer.  So, for the little boy in room 22 of the PICU today we are asking all of our Carter’s Journey followers to pray.  Pray his family feels Gods hands wrapped around them as they say their last earthly goodbye to their precious 2 ½ year old.  We are thankful for God’s promise that this is not our forever home!!

Our experiences have taught us that in one moment, everything can change.  We are thankful that our Savior’s arms are open wide to hold us. Thank you all so much for all of your love for our family.  As always… To Him be the Glory!!!

The pictures here are of the outside of the Dome at Johns Hopkins.



16 comments:

  1. Beautiful post. I will pray for both families tonight:)

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  2. Praying that God grant peace and comfort for Room 22's little boy's family.

    Prayers continue for Carter's healing, strength and comfort to both of you.

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  3. Amanda Duncan JohnstonApril 27, 2013 at 7:26 PM

    Praying for both of your families!

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  4. So sorry for all you have been through. You seem strong, though, with God by your side. I wish comfort for all of your family, as well as the Room 22 family. I was so very fortunate to have four healthy children, so I can't imagine how it would be in your shoes...it must be so hard on you. Keep the faith and never give up hope that your little one will have a miracle...so many people are praying for him.

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  5. I am praying for the little boy in Room 22 and for Carter as well. Thank you for allowing us to be a part of your life and journey through your posts. I pray that you will be holding Carter in your arms one day soon.

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  6. I have just learned of your journey this year from my sister in MS and as a resident of B-More we know how much JH does for the health of people in general; however we sometimes take for granted how important of a place it is. I reacquainted myself with this when I found out y'all were coming up to Charm City so that you can give Carter the chance he needs at the best life imaginable. With this, I began to think of those other babies there that need the prayers. So in my daily prayers I would say "dear Lord, please God bless little Carter tonight, and all those other little ones there with him that need all the help they can get" Well, tonight you gave me a great reminder of all those other babies that I was praying for and didn't know their stories. While I still don't know the story of the little boy in room 22, or the stories of those other special delegates of God's love in the PICU, I'm glad to be reminded that all prayers are important. So for tonight I will have my daily dialog with the good Lord again and say "Dear Lord please remember Little Carter, the boy in room 22, and all your little loves fighting their own battles right here in my backyard at JH"

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  7. Praying fir both families.

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  8. Praying for both, God bless you all.

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  9. Prayers for both families. Hope all is well soon.

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  10. My heart is broken for the family in Room 22. I have no idea of how it must feel to be told your precious baby will soon be leaving. My prayer is for God to bring peace and comfort to them and to you as well. Lola

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  11. Thank you again for sharing with us. We will add the family in room 22 to our prayers as we pray for Carter and your family. May God surround you all with this power and love!

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  12. Our thoughts and prayers are with all who needs God's love and protection. I cannot imagine going through what you are all going through. I thank God every day for the health of my children and grandchildren because things CAN and DO change so quickly. May God always be with you all.

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  13. Praying for both families and especially for the family in Room 22 as they say good bye to their son! Brandon & Meagan - praying for you guys and Carter too. We can't wait to have you home in Brandon. What a special couple you are to care so much for that family - especially when your own is going through so much. You inspire all of us!!

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  14. The Hatcher FamilyApril 29, 2013 at 9:57 AM

    My heart breaks and I add that precious family to my prayers...cannot imagine. IPFC and Family in Room 22!!!

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  15. We have added the little boy in Room 22 to our prayer list. Special prayers for your baby boy that he can remain still and pain free- I can't imagine how he is doing that. With your new room, maybe it will be quieter. God has you firmly in his grip.

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  16. Continuing to pray for you all and also for the sweet baby in room 22. My heart is breaking for the family.

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