Monday, August 10, 2015

The 3 P's

Potassium, Poo, Progress

Brayden needs more potassium, needs to push out more poo and that will be good progress.

Brayden's day started early with a bed bath and full scrub down.  Oh how he needed it, he was stinking out of every nook and cranny.  And he is a boy...why take have a bath?!  So he protested the entire time and after.

Brayden is slowing working his way to being more stable.  His electrolytes continue to look better, his heart rate and breathing have not been a problem for over twenty-four hours now, stool and gas come out little by little (oh the smell of all that when it has been stuck inside for too long).  He has moments of acting more like himself but very tired and showing signs that he does not want to be messed with.  Still sleeping the vast majority of the day; quite upset and irritable when awake.

One of his IV lines was removed, probably not by choice, it wasn't a very good line.  His has one IV line and one arterial line.  The concern continues to be getting and keeping him stable.  The IV lines can only take in so much.  The team of doctors are attempting to start up his feeds through his j-tube so he will get more liquids through that as well.  However starting up feeds when he has been on gut rest for a while is a very slow, tedious process.  His feeding is started at 5 mls per hour.  That is about 1 teaspoon an hour, going into his j-tube (jejunum).  That is crazy slow.  They may increase it later tonight if he tolerates it well.

The hope/plan is for his lab numbers to continue to make improvement with the IV, arterial line and j-tube feedings.  We are trying to avoid getting a central line, which is not necessarily a terrible thing but just one more thing to put his body through and not really a step closer to getting out of here anytime soon.  They cannot push the fluids and all that he needs through the IVs any faster or in bigger quantities, it just cannot take it.  So hopefully getting some nutrition via his j-tube will help and he can avoid a central line.

The GI team came by this morning.  A team of three doctors.  The motility specialist we were hoping to see is out of town for the week but this team read through Brayden's GI history before coming to his room.  One of the doctors was Brayden's GI doctor several years ago (a story on that guy later, it involves one stinky poo and a break-up).  Basically there is not much the GI team can do right now.  They do not want to do any tests until Brayden has recovered and given his GI system time to get back to its "normal", which is very abnormal.  It doesn't look like he will be getting any GI tests during this hospital stay.  Doing any GI tests right now would not be accurate or a very true picture because he body has been through so much and he has been on gut rest.  They agree that Brayden has a serious motility problem and doing frequent enemas is by no means a is probably what put him in the PICU.  They may try a combo or different stool softeners/stimulants to see if that makes any difference...I stressed to them that we have tried them all but they want to try again until we can get motility testing and we are not relying totally on enemas to get the poo out.

Child life stopped by to give Brayden a new stuffed friend.  He nestled right in.  Such a snuggly guy.
Carter and Luke stopped by this evening.  It was the first time since we have been here that Brayden was very content and they were relived to see him.  Jeremy, Carter, Luke and I had a late dinner in the hospital cafeteria, delicious.  Should we be concerned that they served mac and cheese for the third day in a row?
Pray that Brayden continues to make progress and in that progress he gets more comfortable.  Pray for Carter and Luke, they hit the wall yesterday, tears from everyone.  As Carter said, "This has to be the worst summer ever".  Well, it is at least one we will not forget.  Pray that Jeremy and I find the best way to be there for all of our boys.

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