There’s No Place Like Home….

Hi there friends!   Well, I did it again.  Took forever to tell you that we were home from the hospital.  It’s actually been a couple hours shy of 1 week.  SORRY!  I had a lot of catching up to do, my mom was here from out of state, and I threw myself into a few projects while I had some extra help.  We will be telling you about those soon!

But for now….back to last week.  Last Friday, we began the day continuing a 4th gallon of Go Lytely Solution that had been started the night before.  But suspended it around the time that morning rounds happened.  The official read of his x-ray had come in and the docs were no longer concerned about both the elevated air fluid levels nor the stool burden.  All was better!  We were so relieved!  Just as a little perspective….an adult requires 1/2 – 1 gallon of this solution to flush the system and prep for a colonoscopy.  But my 5 year old ALWAYS requires between 3-4 GALLONS of this stuff to resolve his impaction issues.  There was still some dilation but the docs felt that was just from his colon getting so stretched out by the impaction.  It will shrink back eventually.  Cannon still had the CF test to go but he was so happy to get disconnected!  Tubes were still in.  But he was free to leave the room for the first time in 4 days.  He played in the playroom, went to look at a big fish tank on our floor, listened to a man play a harp, and wanted to be pulled around and around and around in the wagon.  We were probably in that wagon for a couple of hours.  Just being free.  He smiled a lot, read lots of signs on walls, sang some, said “Hi everybody” to quite a few people we passed by, and even let a therapy dog named Wolfie take a ride with him!

But we still had that one last hurdle to jump.  The Cystic Fibrosis Sweat Chloride test!  We had a lot of discussion ahead of time about where we would do it (his room or the procedure room), who would be there for support, what meds would best help him relax, and what distractions we would try.  With a kiddo like Cannon…..you have to have a plan and anticipate complications.  And have a plan of what to do when those inevitable complications occur.  We opted for the procedure room due to the bubble machine and laser projector that were new and we thought he might be interested in.  He wasn’t however…..so we resorted to the iPad with his favorite show streaming via Netflix.  In the room, were the tester, Mark, myself, his nurse, and a Child Life Specialist.  He was given a dose of Valium prior to the procedure but it wasn’t enough and his nurse had to run get more part way through.  Also, instead of laying him on the table…..which would require each of us to hold a limb and deal with his incredible strength and escape tactics…..I bear hugged him in a chair.  This allowed Mark to hold one arm and give him support.  While the other arm was held by the nurse so the tester could do her thing.  And the Child Life Specialist held the iPad up where he could see it.  It takes a village to get through a procedure with Cannon!  🙂   The application of the skin irritant, gauze, cuff with ultra low electrical current, and various wraps took about 30 minutes.  (See the bolded section in the previous post for more info on the disorder and testing process.)  It wasn’t easy but he did pretty well considering.  I tried to focus, talk softly to him, and stay calm so my heart rate wouldn’t be elevated.  Which might alarm him and/or make things worse.  After the application, I carried him in the same bear hug fashion and we just walked the halls for the next 30 minutes.

When the time was up, we all re-entered the procedure room…… except for Cannon’s nurse.  A new big, strong, muscular male nurse arrived with orders to pull all the tubes when the tester was finished!  So, we assumed the previous positions and the tester began unwrapping his arms and extracting the sweaty gauze.  The sweat on that gauze would be evaluated for CF.  And much quicker than we had been told.  They would have the results in a couple hours.  Then, we laid him on the table and the male nurse quickly began removing all the tape and restraints on Cannon’s arms.  And pulled his I.V.  And then the L-O-N-G  N.G. tube from his nose.  He fought us during the process but a quick hug was all he needed to calm him after.  He was totally free and happy now!  The Child Life Specialist  gave him an “Act of Courage” bead for his Beads of Courage strand.  For his great courage during the test.  Makes a Momma proud!  We immediately hit the showers!  He was S-T-I-N-K-Y! Cannon got “squeaky clean” as he put it, lotioned up, in fresh clothes, and then gobbled up some broiled cod and a baked potato. The only thing on the hospital menu within the restraints of his diet.  Well, for the most part.  And then, he was off for some more fun in the playroom!  About an hour later, the screaming and cramping began and he required some medicine to calm him down.  4 gallons of clean out medicine do a real number on his poor belly!

At discharge, the resident came in and informed us that Cannon’s CF test was NEGATIVE!  An enormous relief!!!!!  Praise God!  We were given dates for follow up appointments with our pediatrician and G.I. doctor, a couple doses of medicine to help with the cramping later, and we were out of there!   Cannon was so happy!

Later that night, I was putting the boys to bed when a totally cool thing happened.  We usually jump into bed, sing 2 songs, and then pray together.  Well, I sang one song and then asked them which one they wanted next.  Townsend said, “I want to pray.”  Usually, Mark or I say the prayer but Cannon (for the first time ever) spontaneously began to pray!  He said “Dear God, Thank you that the yuckies are out, thank you that the tubes are out, and for playing in the D5 playroom.  Amen.”  I was floored and so excited!

We praise our Heavenly Father for the incredible strength He gives Cannon (and us) to endure these long weeks in the hospital!  For the wisdom, individual attention, and impeccable care from the fabulous doctors and nurses at our children’s hospital.  And for the needed physical help and constant, uplifting prayers we receive from family and friends.  Our God sure is an AWESOME GOD!  He supplies all our need.  Even in the midst.  God’s blessings to all of you!  Much Love!

 

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