Some days...

As Vanessa and I are taken on this journey with Channing leading the way, we continue to be very thankful for family coming to the rescue to cope with us through some of our worst days--there have been many.  Also, the out reach and support of neighbors, family and friends near and far has been beyond belief and we again just want to thank you for your continuous kindness.

Today was one of those "worst days," as seeing Channing upon our arrival became inconsolable.  It is not that we feel like we are getting weak or giving up.  It is the fact that we cannot pick him up, hold him, or rock him close in some quick way to ease his discomfort; we want to with the most dire need.  It is a juggling act to get him out and hold him.  However, while hooked up to IV feeds, breathing support, and most importantly his peritoneal dialysis catheter, we do what we can to "rock and hold" him in his bassinet for "quick" mother and fatherly consolment.  Eventhough Channing is our boy, a champion of battling his illness of ARPKD, he at time feels out of reach.

A few changes to his pain management were made today, still receiving fentenyl, but a longer period between doses.  He does however, have a PRN (as needed/when necessary) order if he cannot make it between a 6 hour period during the day/night. We hope that a slow ween from this medication will occur soon as well.  He receives rectal Tylenol at certain periods of the day as well.  A change to his dialysis fluid was made today as well.  Nephrology figured that he was getting to "dry" with the 4.25 dialysis solution, so a change to a 2.5% dextrose was made prior to us leaving for the day.  He is still on restricted fluid intake through IV; he gets what he needs and that is it.  We are hoping that the treatment of infection has ran its course, as for tomorrow we hear rumors that he may be able to be back on tube feeds with breast milk.  He hasn’t had anything by mouth since last Saturday when the "infection" was discovered--poor little dude.  Changes happen daily with figuring out Channing’s needs, after some time they will be known, but in the mean time we are reminded how difficult treating this disease really is.

I have decided to go back to work this next Tuesday.  Though I am only 5 floors down in radiology, this will be a tough transition to what I (we) have gotten used to; spending 4-5 hours with him daily.  I will definitely be checking on him, maybe "get lost" to stay a few extra minutes with our amazing boy.

With this constant daily struggle we create many happy moments.  This weekend his uncle Vic was able to fly from Connecticut to Michigan to pay a visit to his nephew Mr. Channing.  Let me tell ya, uncle Vic has the touch!  Channing was as calm as a cucumber in his uncle’s hands.