Dec 14-Dec 24

24 Dec 2013

The hospitalist pediatrician told us his concerns with Rokus are his albumin levels being low which are a good indicator of his overall health.  The albumin is protein.  Usually a sick child has low albumin.  These low levels have only been recent so the staff is trying to figure out why.  The other concern is Rokie's weight.  He is underweight for his age.  The doctor wants his weight to increase before is ready for discharge.  Another concern is Rokus' esophagus.  He has a constricted esophagus so he can't eat solids.  This stricture doesn't allow him to get his nutrition orally and it continues to constrict if we don't dilate it.  The doctors were unable to dilate it last time they tried so they want to put a G tube into his belly.  Well, the difficulty now is the surgeon is on vacation and not available to assess Rokus.  I told the doctors I want his opinion before a G tube placement.  If he does surgery I want it timed with the initial bowel reconstruction surgery to limit the overall number of surgeries.  This requires the surgeons opinion and since he is unavailable, we are at a crossroads indefinitely.  Who knew nutrition and other fairly minor things would be so important?

20 Dec 2013

On Wednesday this past week, I learned that Rokus has a constricted esophagus.  The medical staff wanted to figure out why he was unable to keep foods down so they explored his throat with a camera when they found the stricture in the esophagus.  The stricture is approximately 3 cm long and the inside diameter of the esophagus is constricted down to about 2.5 mm, which is incredibly small.  At the same time, while Rokus was anesthetized, the doctors investigated his bowels through his stoma and his rectum.  Turns out, it appears he has very little scarring on his bowels which may be very very good for surgery.  Perhaps it won't take too long to get his bowels reconnected instead of waiting a full year.

So, to deal with the stricture in Rokus' esophagus, the doctor tried to expand the throat by inserting a balloon-like devise and pumping it up.  The problem was his throat was too small at the stricture and the balloon could not fit.  This means they will soon need to install a gastic tube (G. tube) from the outside of the belly directly into the stomach.  This will allow the doctors to attempt to insert the "balloon" tool from the stomach up the esophagus to the bottom of the stricture.  Perhaps that will allow them the room to treat his esophagus.

The other things the doctors are working on are his fluids.  He currently takes some medications, receives saline bolises through an IV and receives formula through a feeding tube.  Over the course of today and tomorrow the doctors are removing the IV fluids from his treatments.  If he responds well to the removal of fluids then we might be able to remove his IV line in his arm.  If he gets rid of the IV line then some medical staff people want to send Rokus home.  WOAH?!?!?! Home???  Crazy, right?!   That is exciting but a bit nerve racking at the same time.

There are so many things to be ready for when thinking about bringing Rokus home.  In order to receive immediate gastro-intestinal care we might be able to only drive as far as Santa Barbara instead of Oakland.  We can probably draw weekly labs from Bravo Pediatrics in SLO.  The OT & PT can be taken care of in SLO as well.  There is also a home in Hayward called George Mark Children's Home.  They provide temporary transition homes that allow families the opportunity to live as a family, take care of their child while there, and they have volunteer nurses 24/7 who can help out if you just need some support.  It is not like the hospital where a nurse wakes you up every hour or being limited with personal time.  At George Mark your family comes and goes as they please.  You just get the opportunity to learn what it's like to care for your child at home without all the stress.  We hope we will be eligible for it.

So, in summary, Rokus will continue to have an ostomy bag, will get a G. tube into his stomach from outside the belly, will receive treatments on his esophagus every other week, will need weekly labs for his vitals, electrolytes, and kidneys, and his bowels need to be reconnected at some point.  All in due time.  We will find out over the course of next week if he will actually go home.

14 Dec 2013

I got up to Oakland late Friday night, and during the night the nurse and I had to change his ostomy bag twice because it just did not want to stay on.  Poor little guy just wanted to sleep and it just isn't easy sleeping in a large stinky mess of wet stool.

We are trying to figure out how to get him off IV support and we also are trying to thicken his stool.  This will allow him to get off the IV and take medicines and formula orally.  We also need him to keep trying to eat food so he can avoid any type of food aversion.  Right now 80% of what he eats is immediately regurgitated.  He did really well with a rice crispy treat bar.  All fruit keeps coming back up but he continues to give eating a strong effort.

Rokus is really smart and understand a ton.  He is starting to speak more.  Today he said very clearly, "I want my Mama."