Thursday, December 1, 2011

Caelan's Thursday housekeeping

Every new day, a new priority or a new worry to add to the list.

Starting at the bottom.

Now that  Caelan's trached, his airway is almost a non-issue.  He's still vented and tomorrow they will begin to wean all the heavy narcotics and slowly start to wake him up.  Should be interesting... Everyone seems to be psyching themselves up for the wild boy's return!

Infectious Disease has discontinued any wide ranging non -specific antibiotics after none of the various cultures grew anything in the lab.  No infections have been detected.  They'll remain on the scene but at this time have basically signed off.

Cardiology reported a strong healthy heart after the ultrasound (echo) done on Caelan's heart the other day.  No concerns there.

Feeds were started again yesterday.  We started really slow at a rate of 10mls/hour, increasing by 5mls/hour every four hours that he tolerated it to a max of 40mls/hour.  Mid day today Caelan's heart rate increased and he seemed flushed and uncomfortable.  We wondered if it was his gut getting reacquainted with his food and held the feed for a couple hours as well as beginning the poop protocol medicines.  I didn't ask Damian how that was going this evening, so I'll go with no news is good news!

Caelan is retaining fluid.  He's puffy PUFFY!  He's accumulated so much fluid and is so swollen that there are no wrinkles or creases in his usually pudgy little hands and they look really painful.  You can also see evidence of this in his face, his feet and his belly is all distended too.  Heck, his belly button has almost disappeared!    This is called edema
If the blood flow to the kidneys is decreased by an underlying condition such as heart failure, the kidneys react by retaining salt. This salt retention occurs because the kidneys perceive that the body needs more fluid to compensate for the decreased blood flow. If the patient has a kidney disease that impairs the function of the kidneys, the ability to excrete salt in the urine is limited. In both conditions, the amount of salt in the body increases, which causes the patient to retain water and develop edema.  (Source:
There are lasix they can give him to help him get rid of some of this fluid but it's always a fine line as to when it should be done.  A bit of a balancing act.  This afternoon they finally went ahead with it and it seemed to be working well when I left (in that he was peeing out a ton).

Caelan's kidney seems to be the biggest priority today.  With a solitary kidney it's always a concern but often takes a back seat.  Over the weekend when Caelan went almost 48 hours with no real hydration, I mentioned my concern that this would be extremely hard on his kidney, but at that time a safe airway was a much greater concern.  Not surprisingly in addition to the edema, blood tests show that the functionality of his kidney is deteriorating.  He's also had some soft blood pressure readings.  Blood pressure can also be indicative of a kidney in trouble. 

First we wanted to determine if that blood clot in the general area of the kidney was contributing to the problem.  The heparin (blood thinner) was stopped hours before surgery on Wednesday and wasn't planned to be restarted for a week post op to allow for healing.  An ultrasound was ordered for this afternoon.  I am relieved to say that the results from this ultrasound were received this evening and there is no longer any sign of a blood clot.  They'll be monitoring the kidney very closely over the next few days and see if we can't get some better numbers.  Nephrology has been made aware of his situation as well.


  1. Praying this is a temporary issue and he gets better real fast so he can get home.
    Miss you and think about you all every day.. many, many times

  2. So much to rationalize. So much to worry about. How do you keep this all straight? You have become a case manager and health expert for your son. No small task. Wish you love and luck in all this management. Glad to hear the good news on the breathing front though.

    Joanna XXOO