July 15th

Yesterday was the hardest day I can think of that we have been through. 

We had decided we did not want to put Rowan through a prolonged period of discomfort by starting TPN.  We decided that if Rowan wasn’t hungry, giving him IV food wasn’t fixing a discomfort for him, so we weren’t going to force it on him.

This was something that was a giant ethical issue for our pulmonologist and our hospitalist.  The pulmonologist (whom we love and feel has fought for Rowan every step of the way) wasn’t comfortable with our decision.

This triggered a realization that our hospitalist was also not okay with it AND the realization that it was against hospital policy to not give TPN and IV fluids, regardless of patient or parent refusal. 

After being extremely distressed and upset by this thought system, we decided to find out our options.

Option 1: Do TPN

Option 2: Go home. Let Rowan die here, in his room, with family.  Evelyn may be exposed to it.  We will forever walk by some room in our home and know that Rowan ended his life there.

Option 3: Clarehouse, a hospice facility that takes children.  At Clarehouse, Rowan would not be allowed to have an IV or get anything through his G-tube…so no meds except for ones given rectally or through a patch.

We almost immediately eliminated option 3.  We didn’t want to stop Rowan’s meds and IVs yet because as of right now, he’s still pretty playful.

Option 1? Well, to be honest, we considered it.  We felt like we were crazy after the incredibly charged accusation that came along with our decision not to force feed our son who wasn’t hungry.  We talked and talked about this.  In the end, we decided that if we started TPN we would be doing something TO Rowan, and not FOR Rowan.  We would not be meeting our goal of keeping his quality of life the best it could be, because it risked prolonging the unpleasant part of the end of his life.

So we decided on Option 2.  Rowan is coming home Monday on hospice.  We will guide Evelyn and Rowan through this time.  We will do what is best for our son.

So today we spent time with Rowan, who is starting to become more uncomfortable.  I took Evelyn to a movie for some mother daughter time (Sunday is our day).

We talked to child life.  We told Evelyn that Rowan is dying.  We cried a lot…because Rowan is approaching the end far quicker than we thought he would when we decided to go the hospice route.

I understand that from an angle of thinking, not giving TPN is “starving” a child.  Rowan may die, partially because of a lack of nutrition…but he wasn’t hungry.  His digestive system was shutting down…shut down in fact. TPN wasn’t going to fix him.  To get enough calories in Rowan through TPN would be enough fluid that it would make him too puffy.  Same with feeds.  IV nutrition wouldn’t fix him, and it would likely make him more uncomfortable. Why would you force feed someone who wasn’t hungry…especially if they weren’t hungry because they were dying?

I don’t get it.

But we are doing what is best for Rowan. We are listening to him.  We are meeting his needs.  That is what we can do for him.