"Our Little Trooper"

"Our Little Trooper"
"Let me live, that I may praise you!" Psalm 119:175

Saturday, October 1, 2016

Feeling grateful for nurses who make and keep pinky promises.

Last night Rowan melted down.  He doesn't do it often, so when he gets to that point, it is truly heartbreaking.

Rowan has been NPO for about 60 of the 71 days he's been here.  He has only eaten maybe a dozen sips of clear vegetable broth or apple juice in the past 2 months, and those all came during one 2-3 day stretch.  Other than that...ice chips...he has only eaten ice chips.  Then, because of some worsening gi symptoms, they made him NPO again this past weekend.  Last night it was just too much for him to handle.

He wants to taste something.  He wants something more than ice chips in his mouth.  He wants food. 

When he broke down, he started crying, telling me that he felt like he was going to go insane, because it had been so long since he got to eat anything.  He said, "I know they aren't focused on food.  They are trying to fix everything else medical.  But, pretty soon I won't want food again when I start chemo.  So, I want to eat something now, while I still can. This is torturing me."

I cried with Rowan.  The nurse came in and sat with us while Rowan explained how he was feeling.  He told her that he has been trying to be strong and keep his mind off of it, but that he just finally couldn't take it any more.  He felt bad for breaking down.  He said, "I've just been trying to take it, but I can't any more." It was heartbreaking.  We did everything we could to reassure him that he doesn't have to be so strong all the time.  The nurse let him know, "Rowan, everyone here already knows what a rock star you are. You don't have to prove anything to us."  I told him, "You have to talk to us Rowan, we all want you to be as comfortable as possible and have what you need AND what you want.  But we can't do that if you aren't telling us when something is bothering you."  He promised he would try not to worry about being super strong ALL the time, and that he would open up about what was hard on him more.

He is also experiencing extreme pain at his j-tube site.  When they pulled the j-tube in the OR on Thursday, and replaced it with the temporary foley catheter, the hope was that it would heal up some and close in a bit.  It has not.  It has worsened.  The stoma is ulcerated and eroded.  We have had to change the dressing every four hours and it has been an extremely painful process.  He was just over that as well last night.  He knew that surgery was coming bedside to check it again in the morning and that we would have to take it all the way down to the raw site once again, and that we needed to culture inside the tract again.  He asked the nurse, "Can I have Ativan and Dilaudid tomorrow, please.  And can I have the Ativan 30 minutes before they get here, and the Dilaudid 15 minutes before? I can take it again, if you can give me that."  Again, heartbreaking that he was worrying about something that wouldn't happen for another 12 hours, that he was anticipating the torturous pain, and that he knew what he wanted to medicate him for the ordeal.

This little guy has fought hard for so long, these have been the most couple difficult months of his life, and the past few days the pain has just finally worn him down.  We have had the best nurses ever though.  And the two nurses (day and night shift) for the past couple days have been the same two gals.  They have been his biggest advocates, bubbly cheerleaders and best friends.  They have helped me through the past few emotionally rough days as well.

This is how we ended the night. 

His nurse and I pinky promised Rowan that during rounds, we would fight for him.  We would request that he be able to get food, and we would advocate for a new dressing change plan with better pain management. 

I will treasure this picture forever.  I am going to order a print of it for the nurse as well.  These nurses give so much to their patients.  They help us parents as well.  They make pinky promises to broken hearted little boys...and they keep them. 

The night nurse passed the whole conversation on to the day nurse this morning, who then helped me talk to the BMT doctors and the surgeons during rounds.  We got Rowan orders written for clear liquids for now, and will advance to solids as he can.  We came up with a less frequent, but still adequate dressing change regimen, and Rowan got Ativan and Dilaudid before the big wound care and culture session.

Feeling grateful for nurses who make...
and keep...
pinky promises.