Wednesday, September 16, 2009


Well little one, you have managed to do it yet again...just when everyone thinks we know what the game plan is, and gets cautiously optimistic about it, you change it!

Your TPN and lipids arrived last night about 10pm and were hung. They were connected to your central line. We got you all changed and ready for bed, you ate one last bottle (3oz) and to sleep you went. Then you began passing a lot of gas, and it spooked us that maybe it was coming out your incision and not your stoma. We managed to verify that it was coming from the stoma, which is right where it should be coming from. Finally, we decided to try and get some sleep.

About 2:30am, your nurse came in and we made a note to ourselves to never let the nurse empty your ostomy bag. ESPEciALLY not at 2:30am. One diaper change, one bandage change, one outfit change, one bed linen change later, back to sleep we all go. Only to wake up around 5am to you fussing. One diaper change, one bandage change and one 3oz bottle later, you get settled back in for sleep, and then we notice that your armpit of your outfit by your central line is soaking wet. It was leaking.

We begin checking the connections in your line to see if maybe one was just loose, but they all felt ok. Then we could see that the dressing over your line and underneath the dressing itself was wet. We call for the nurse. This means a dressing change at the very least. That is kind of brutal on you because the tape that is over the dressing is so tough on your skin when it comes off. You scream through that. She then connects a syringe of saline to one of the lumens of your line to flush it. It pours out of your skin where the line inserts. Ugh. We know this means that your line is no longer usable. What we don't know is the "what now".

Surgery comes by 3 times pondering what to do with you. One of your surgeons is so frustrated with this latest development that he kind of storms out for a moment. We feel his pain. He comes back and is just exasperated and said that we are too nice. That is why all the bad keeps happening, because we are a nice family. So, they all debate amongst themselves. Both attending surgeons are brought into the discussion.

The decision is this:

They came up just a few minutes ago and took out your central line. They chose NOT to take you to the OR to put in another central line. They are trusting you to eat well. Without a line, you have no way to get even basic IV fluids for hydration. They are also trusting your small intestines to begin working like they should and start absorbing the nutrients you need. Without a line, you can't receive TPN and lipids for additional nutrition. They are trusting you to take your antibiotics by mouth. You were recieving them through your line. They are giving you gut-specific antibiotics to fight against infection in your belly. They are trusting that belly of yours to rid itself of all the yuckiness inside it, and get better.

They are amazed at how well you look. They are amazed by how perky you act. You have begun smiling and laughing at them and flirting with the women, etc. Their words...."he's a very strong boy. We are so thankful that he's a very strong boy".

So am I Riley Bear. So am I. We are putting a lot of trust in you being so strong. Please keep up the fight!



Anonymous said...

Please baby Riley...fight, keep fighting! You are a very strong little baby. Trusting and Praying for a complete healing. Love you all, Pauline

Jenny in Chapel Hill said...

You can do it Riley! We're all pulling for you! Neil and Evan (your 6 yr old Chapel Hill twin friends that you've not yet met) are cheering big for you!

michelle said...

I saw Riley was wearing the "I'm in charge!" shirt. I don't think anyone will argue with that! Everything has always been done in Riley's own way. He's such a tough little guy and I know he will get through this.

Michelle, Scott, Jason, and Braden

Anonymous said...

Lindsey, If anybody can pull this off, it's Riley! He has proven in the past, just how much he is capable of, and I know he won't let us down this time either! It's Riley's way of keeping those doctors on their toes, and teaching them a thing or two. keep fighting, and SMILING cute boy, and show everyone just how STRONG you can be!!!!

Many Hugs!!

Anonymous said...

Riley - please show us once again just what a miracle child you are. Continiued prayers for the family and medical staff. Jean

Jenni said...

Extra prayers for Baby Riley and all of you!

brad.kellie.babyc.lucy said...

Dear Riley,
Please hurry up and get out of there. I have no many cupcakes to share and smash with you at my birthday party. I know the nurses are super cute, especially those ICN ones, but they will visit you OUTSIDE of Duke. You can even bribe them with trips to the beach. Now, stop causing your mom and dad so much heartache, stop stealing the spotlight from Travis's first lost tooth, and go home!


p.s. My mommie said to give you a dose of tough love because being nice wasn't working on you :)

brad.kellie.babyc.lucy said...

I meant so say "I have SO many cupcakes..."

Anonymous said...

Riley, keep fighting. You're so strong. Praying for all of you and for Riley's healing. Love, Debbie and Gary

Anonymous said...

My prayers are for you little man. And for those entrusted with your care.


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