January 30, 2017: Day 72

Doug says he feels like an elephant.  He has had his feeding tube hanging our of his nose since January 3rd.  Writing the 3rd of January seems crazy. It should have been much longer ago than that! When they tried to put the tube in Doug's nose on January 2nd it was awful.  He made them stop, it hurt so much. Unbelievably, they talked him into letting them try again and they got it in on the 3rd. When he was moved to Vibra on the 10th, the doctor said they needed to change the feeding tube because the one he had in his nose was the size of a fire hose. They put in a in a smaller one.  I dreaded them changing it, but unbelievably it went pretty well, not near as traumatizing for both of us. I had to help hold the tube in place.  Tube placement is part of my skill set.:) Everyday since that first day that the tube was placed Doug has complained and wanted it out.  It is very irritating to his nose and throat.  Not any fun to have, even though it has been life saving for Doug

Elephant Man

The nurse is in Doug's room now replacing the nose piece for the feeding tube.  I said to Doug, you know you have an interesting relationship with that tube.  First you hate it because it hurts and it is always getting caught on things and yet it provides you all your nutrition.  Sara, our nurse said "Yes, and you don't have to swallow these huge potassium pills!"  I am not sure Doug was finding much solace in our encouragement.

Why do I keep talking about this feeding tube?  Because it has been such a nemesis.  A week and a half ago Doug started eating pureed food with the SLP.  Then last Friday he began eating 3 meals a day and  the nurse began turning off the feeding tube during the day. Well, this weekend went really well.  Doug is swallowing the pureed food and talking clearly.  No choking!  So today we pushed our SLP Conrad a little and asked him how long until Doug gets the tube out. He knows that Doug hates the tube. And so he stayed later tonight and fed Doug dinner to evaluate how he is doing.  Doug ate baked Zita, California vegetables and fruit cocktail and none of it was pureed!  He passed! Conrad the SLP asked the dietitian to come down and we reviewed what he had eaten over the weekend.  She agreed to turn the feeding tube off tonight and Conrad will work with Doug to eat a soft menu tomorrow, not pureed, and then they will talk to the doctor.  He may get his feeding tube out tomorrow!  Doug is so excited.  We are so excited.  This feels like a really big step and will help Doug to feel more normal.  I asked Conrad if we could consider a Guinness beer for the Super Bowl since it has texture.  He said he did not know about Guinness but a beer could be negotiated.  Wow....Doug has not any had any beer since before HSCT.  Not sure he has any longing for a beer, but the best part is that it helps him to feel more like himself.  He is longing for normalcy.

And so we pray:

God of Light,during this season of Epiphany the light has been growing day by day and we are so thankful. The light is represented in the progress Doug is making. We give thanks for his steady improvement. Our hearts are filled with delight with the news that the feeding tube will soon be out. We pray that Doug's swallow continues to improve and that he will soon be eating his favorite foods. Amen