Quick Update

Author:  Sarah

Chris and Katie went home yesterday so Porter and I are on our own.  Actually, I'm doing a little victory dance right now because I got him to go to sleep AND he's not laying on top of me!!  Understandably, he's been very clingy this past week.  It wouldn't be a problem if I didn't ever need to eat, go to the bathroom, brush my teeth, etc.

The nursing staff brought in a new bed for us two days ago.  It's designed for older children and adults who are a fall risk and it works perfectly for us.  Much better than sleeping on a panel mat on the floor (we each took a shot at that) or snuggling up in the crib (that was all me).  This bed is sort of like a bed tent and zips the occupant(s) in so that nobody falls out.  Fantastic.

Yesterday's ultrasound looked good so they turned off the heparin drip.  Yay!  That was the last thing tying him to the IV pole.

                                                Out for a spin around the transplant floor.

Today's goal is to get Porter back on his normal bolus (meal) feeding schedule .  For three days they had him on a continuous feed which resulted in just as many episodes of vomiting.  Porter has never tolerated much volume in his stomach, especially while sleeping.  By the end of each day Porter's stomach was full to the point of discomfort.  He was super fussy and then would get sick.  Last night I convinced the NP on call to turn off the continuous feed around 3 am.  We opened up his g-tube and let it drain into a diaper.  After that he slept peacefully.

So far the bolus feeds are going well.  The team wants to make sure he is getting enough fluid; and since I started with a small volume feed this morning and am gradually increasing, they have him on IV fluids.  It's kind of a pain because it means he has to be hooked up again but things could be worse.

The most annoying thing is how frequently the drains coming from his abdomen pop open and dump body juice all over me.  Gross!

Lots of learning to come over the next few days as the team prepares us for discharge.  The nurses are quizzing me on all of Porter's medications (8 in total).  In addition to administering medications twice each day we will also have to weigh Porter and check his blood pressure each morning.  That may seem like a lot but when you consider what we've been doing all along:  measuring and mixing formulas and amino acids, dosing nitrogen scavengers, waking up in the middle of the night to feed and medicate him...it's really not that bad.  In fact, we may be able to move away from the 10 pm feeding this summer as Porter is able to better tolerate his food.  Sleep.  I can't wait!!