Home!!

On Friday evening, October 7, we received the good news that Peter's wounds are healing enough to come home.  We arrived home Saturday evening. 

Peter still has a wound vac on the midline incision, but we don't expect that he'll need it more than a week or two.  The vac dressing sits on top of his belly, with a tube attached to the dressing, and then a pump attached to the tube, which all work together to provide suction to create negative pressure to promote wound healing.   I wasn't sure how we would manage having a five-year-old attached to a wound vac.  It is a three pound machine, about the size of a small lunch box, and the tubing is about five feet.  Much to my surprise, he has been remembering to take the machine with him when he wants to walk around, and gathering up the tubing so that he doesn't trip over it. 

Dare I say that life without the fistula is dramatically different already?  I am still holding my breath that some new problem does not emerge, but so far I am astonished by the difference in his care.  Once the incisions heal up, I think that difference will be even more profound.  I know it doesn't sound like much to go from emptying two ostomy bags to just emptying one, but multiply that times three or four times a day, times seven days a week and it adds up, especially to a five year old who has to stop playing when mom says it is time to get his bags emptied, 800 to 1000 ml a day from that fistula!  Then add to that the additional time difference between a ten minute ostomy bag change twice a week, versus an hour-long change for both the ileostomy and fistula which was occurring two to four times a week. 

The main reason for the surgery of course was not to simplify life, even though that has been the benefit I find most dramatic at this early stage post surgery.  The real purpose of that very big, risky surgery was to allow this child to eat and get off TPN.  The fistula has repeatedly made it impossible to get feeds high enough to get off TPN, because it would leak more fluid as the feeds increased, throwing electrolytes off and fluid status off.  The true dramatic changes from this surgery are yet to unfold as we hopefully finally get Peter off TPN over the next year or so.  Yes, he still has many risks with liver fibrosis, portal hypertension, low white count, low platelets, and enlarged coronary arteries, but I expect that some or much of this will resolve as he moves away from TPN dependency as well.  Omegaven halted the progressive liver damage so that we could get to this stage without a need for transplant, but with Peter's bilirubin having been so high for so long, the only way to heal the liver from its fibrosis is to get off TPN.  So, now we have a chance to do that!