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.