A very long post for the longest day in a very long time

Yesterday gave us two-part excitement and two fun filled trips to Children’s.

Round I

In the afternoon (any two part trip that begins in the afternoon is bound to be red eyed) we took Ellie in for her scheduled upper GI contrast study to look at why food isn’t finding its way from her small bowel to her colon even with a wide open opening between the two and a very tightly plugged ostomy. Once again they injected some chalky barium into Ellie’s g-tube and we all watched it on x-ray. Into her stomach. Into her upper small bowel (well, okay the first part of the small section that she has) and then into the lower part of her small bowel. And there it stopped and pooled on the upstream side of her ostomy and the connection to her colon:

Dam. And Damn.

Not only was it not passing but like the water upstream of a dam, her small bowel dilated while we watched into the mess that we had seen in the past.

We watched, off and on, for three and a half hours and this is all we saw. Which was concerning for all of us including Dr. Jennings who ducked out of his clinic hours to watch some of the process.

Ellie was very happy to run around in a Johnnie and entertain the radiology folks:

We all are puzzled by this but encouraged by the fact that her bowel returned to a normal size after we popped the plug in her ostomy and allowed the barium to drain. This is a good sign that her bowel has regained strength and is not permanently dilated and that the progress of the last 15 months hasn’t been reversed.

We are still unsure of what to do and are thinking of ways to solve the puzzle of Ellie's gut. We didn’t expect to find any clear answers yesterday but this gave us some insight into what is going on in Ellie’s post-op bowel.

A next step is to schedule an endoscopy to look around and we will also restart Ellie on Reglan, a drug that once helped her stomach to empty but also works on the colon to kick it into gear.

Round one of our adventure ended at home around 6:15 PM. Karlene was here to help us corral Ellie and get the evening under way. Making dinner, setting up TPN, getting Ellie fed and hooked up are all a nightmare when we are late coming from Children’s and having Karlene there was a big help for us.

Little did we know how helpful she would be in round II.

Round II-

Round II started at exactly 7:48 when, after feeding Ellie and getting her set up with her enteral(formula) pump, I went to hook her up to her TPN for the night. Each day as we take her off of her TPN, we inject heparin into her central line to keep it from clotting (yes, the same stuff that Dennis Quaid’s babies had trouble with). Before we hook her up again we have to flush saline into the line to clear out the heparin.

So after I cleaned her central line cap with alcohol, I connected the saline. About halfway through injecting the syringe into her line I hear a pop! very similar to when Abby pops her gum in her mouth. Then all of a sudden, the flushing gets very, very easy.

I knew something was wrong, very wrong and used the serious voice that I learned when I was working as a lifeguard:

‘Abby! I need you’

We used to call the response of the nurses at Children’s the thundering herd. Well we had our own herd last night as the cavalry came. I won't use the word thundering for political reasons and my dislike of sleeping on the couch.

It turns out that there was kink in Ellie’s line where I couldn’t see it and when I applied the normal force of the wide syringe to the skinny little line, the line swelled and burst like a garden hose or a bicycle tire.

Ah crap. I busted her line. Yup, no two ways around this one. I did it. I didn't do anything wrong, but I popped her line.

We quickly clamped her line and grabbed some stuff for a return trip to Children’s. Three Ellie blankets, the portable DVD player and the diaper bag.

With Karlene handing Ellie to me in her bare feet in the snow we got to the ER in record time where fortunately someone at the front desk overhead Abby say the words ‘central line’ and escorted Ellie and Abby in an exam room before I got in from the parking garage.

We spent a very frustrating evening explaining to the doctors in the ER about 1) Ellie’s plumbing and diagnosis and 2) what needed to happen to get her line repaired to let us go home which is essentially a 20-minute patch job if you have the tools and know-how to do it.

Apparently last night was very busy one for the surgeons at Children’s and very few people know how to do the central line repair.

Around 9:30 we boldly told a surgical resident that yes, we wanted it repaired but no, he wasn’t allowed to do it because he had no idea what he was doing.

Sorry to dismiss you but go get the boss.....

Ah, DVD's.....

Around midnight, with Ellie finally asleep in the ER room, the surgeon on call was still in surgery and they set Ellie up with a traditional (peripheral) IV for fluids since she had been off of TPN for a very long time.

A little after that up we went for a ride to the 10^th floor. Our short repair trip that could have taken 20 minutes at home if we had the repair kit was now an overnighter.

Double ‘Ah crap’.

Around 2 this morning the surgeon arrived in Ellie’s room to fix her line. In the room were Ellie, Abby, the surgeon and some surgical residents including the one that we had dismissed earlier in the evening (I went home to deal with our four legged first born who was about to pee on the couch when I got home around 1 AM).

And who, do you ask, was the one to do the repair?

Yup, Abby Brogan, Super Mom who, as she told me proudly at 3 AM when she called to tell me that things were a success, not only did the work but essentially called Dismissed Resident a dumb-ass in the process and was backed up by the surgeon on call.

Abby: ‘Um, why are you touching that? You’re not sterile.’

Surgeon on call: ‘ Yeah, why don’t you just take what you just touched, throw it away and back away….’

Someone’s manly parts are shriveled looking like he spent too much time in the pool right now.

So much for your super-fancy-med school, my wife just learned you a lesson!

Overall the repair was a thumbs up success and we were able to avoid the Operating Room and removing her line.

Ellie now has a very long central line with two splices in it, but it is still functional and she is hooked up right now making up for lost sleep from last night.

As a bonus Abby has the distinct pleasure of doing the most unholy thing that a parent of a kid with a central line can do: she took a pair of scissors to Ellie’s line. Short bowel parents look away now, the picture below may give you nightmares….

It took until 11 this morning to get rehydrated at Children’s but we made it home just ahead of noon.

Tonight is an early night for all of us…