Tuesday, November 8, 2011

We lost something today . . .

What happened today, prompted me to write the Micro-Preemie Handbook post.  If you haven't already read it, click here to read it first.  It's an essential part of the story.

After therapy today, I went to change both kids' diapers in the bathroom at the clinic.  Their physical therapist was helping me with the kids when she noticed something on the bathroom floor.  She pointed to the mysterious object and said, "Is that the door stop?  What is that?"  I look down and shockingly replied, "No, that's Cade's g-tube!"

Between him pulling on it all the time lately and me picking him up with one arm around the stomach since I was holding Camdyn in the other arm, it popped out.  The balloon part of it that holds it in his stomach had burst open.  I threw it in the trash and asked for a band-aid to put over the hole in his stomach.  The hole is very small (about the size of a belly button).

It was 12:15 PM.  I tried calling both the GI office and the pediatrician's office, but they were both closed for lunch.  That's how Cade rolls!  He learned his Micro-Preemie Handbook lessons well.  Do the unexpected.  He had to add in, "at the most inopportune time!"

When I finally reached the GI office, the nurse told me we needed to head to Dell Children's ER and soon!  The site would start closing up within the next 45 minutes.  We did not have any back up g-tubes at home to reinsert.  I had called the supply company about sending us an additional one when we used the last one.  I was told they can only send one every 6 months.  There's another stupid policy in this whole micro-preemie world! 

I asked the nurse about the necessity of going to the ER to get another tube when we hadn't used a tube since March.  She asked the GI doctor, and much to my surprise, he told us we could let the site close up on its own.  WHAT?!

She goes on to tell me to use gauze and tape to cover the site for the next couple of weeks.  She rambles off some very vague instructions and is ready to end the conversation.  Wait - I have questions.  To her, this is an everyday occurrence.  To me, it's my son with an open hole in his stomach!

This is definitely not how I had this planned, but what do the babies ever do according to my plan?  So, here's what Cade looks like now. 




The bandage looks much worse than it is.  We could probably cover the hole with one of those little circle band-aids, but this is how we were told to do it.  We are supposed to keep the area clean and dry.  Cade will be taking only showers for the next few weeks.  He can't sit submerged in water. 

We have an appointment the week of Thanksgiving with the surgeon to assess the site.  He will determine if it has closed on its own or if he needs surgery.  As stange as it may seem, I want him to have it surgically closed.  Right now, a stitch is trying to come out causing a bump around the site.  I know he is going to have a scar, but I want the scar to be pretty.  You can see in the above picture that the right side of his belly already has a big scar.  When the nurses removed the lead tape from his translucent, thin skin back in the NICU, it just pulled the skin right off.  He deserves a pretty scar.

I've been waiting a long time for this.  This is the first time since Cade's birth that he has been completely tube free.  He did pull his ng tube out on many occassions, but we always knew we had to put it back in.  This is different.  He's tube free, and there is no plan to put any tubes back in him or on him or anywhere around him!

7 comments:

Megan said...

Talk about a crazy story! My guess is it's for the best since he's eating well now and all. Cade didn't want you to drag it out anymore. ;)
Congratulations on another milestone!

marcie said...

You're last paragraph brought a tear to my eye. This is wonderful news! Congrats!

Angie said...

Congrats!!!!!!!!!!!!!!!!!!! So happy for you! Not about the way it happened but you got through it.

Andrea Farrell said...

Wow, that sounds like it was a super stressful situation! Congrats on the milestone. So exciting that Cade is now tube free!

Jessi said...

YAY!!!!!!!!!!! Pretty much one of the best things ever! TUBE FREE!

Wiley said...

Tubefree is crazy, way to go big guy!

I'm impressed you were able to get a nurse at all. Despite our gastroenterologist telling his nurse to always forward any info from us to him and treat as a priority, I have an impossible time getting her to communicate. After the last incident, he I think drove it home enough that the problem won't reoccur, but I still fear. Actually once got to the Dell, through the ER and admitted before she responded to a message that was clearly urgent. Love, love, love the GI though, so deal with the nurse making me want to pull out my hair. It helps that he's taken to calling my cell to chwc in on the off weeks that we don't see him.

Sarah Pope said...

This is great!!! (Well, not the way that it happened, but the end result will be!!!) I'm pretty sure I would have FLIPPED seeing part of the gtube on the floor! How scary. I agree with the others, I don't know how you ever got ahold of anyone to ask! We can't get in touch with our GI person if our lives depended on it!
OH, and I know this is probably more than you want to know...but when Samuel had his abdominal drain taken out after his bowel perforated, they left the hole to heal on its own. Now it looks like someone has pinched his skin there. If you want it to heal nicely, I would put my foot down NOW so that you can give him the best scar possible. I wish I had put my foot down with the surgeons. I will never understand why they don't feel a nice scar is important when people pay BUCKETS of money to plastic surgeons all of the time!!!