368 Days

On December 5, 2018, Sonzee had a checkup with her ophthalmologist at 7:45am and then we made a mad dash to admitting at PCH in order to make our check-in time for her port placement.  The surgery went quickly and thankfully uneventfully, and then later on that night she began her 2nd journey with TPN (an acronym that in short means she is getting food via a central line directly into her bloodstream).  We didn't know what to expect, we didn't know where the journey would lead.  A year ago she weighed 8lbs less and was about 5inches shorter, her GI system was exhausted, and she was in so much pain it was unbearable.

368 days have passed and it is hard to consider her without her extra tubing and hardware, yet eventually, we will probably have to do just that.  Every month the suggestion is made and Sam and I take a deep breath, swallow, and say "no".  If there is one thing I have gained on Sonzee's journey it is confidence in truly knowing that I don't need to humor anyone anymore to prove I know her best.  I know what taking her off of TPN will look like.  I know it in such a way that I could place dates next to each step forward and ultimately backward she will take.  I know that for 4-6 days her body won't say a word.  I know that after a week she will start to display some discomfort.  I know that we will never be able to maintain her required nutrition.  I know that she won't gain any weight, and she will eventually lose all the weight she put on over this past year.  I know that in the long run, it just won't work and we will be back to debating putting her back on it for the 3rd time.

Yet, I sometimes wonder did we get ourselves in too deep when we initially made this decision.  I know we did it with her best interest at heart, we did this for her, but what is supposed to happen next?  Is keeping her on worth the continuous risk of a central line infection that could cause her to be septic?  Is taking her off worth the risk of her losing weight and ultimately ending up in excruciating pain 24/7?  Does keeping her on or taking off even matter in the long run when she is now anemic, and still dehydrated despite all our efforts?  If only we could know what lay ahead.  If only we knew that keeping her on it or taking her off was the right answer.  Yet, we don't have the answers and we won't know what is meant to be until it happens.  So on Tuesday, we will go for our monthly appointment only to be faced with the same question and ultimately we will wait another month because that seems to be the only decision we are able to make.