It's Not That Scary...Really

There should probably be about three pages of updates here in order to encompass all that's gone on in the last 3 months, but its pretty much the same thing over and over again regarding Lu- infection, antibiotics, tests, lousy motility, poor nutrition, flailing and failing. You could also throw in there some of the usual stresses like work, money, my own health, and the holidays to add to the little crisis fiesta going on around here.

And all of it leads us to where we are now, most importantly- home and doing well.

Small, abbreviated background: Lucy continued with that on and off again infected mass near her j-tube. Each time her intestines would practically halt and we'd be stuck watering down her formula and running feeds for a measly 10 hours a day. It was taking its toll on her emotionally and mentally. Her body was starving, and therefore her brain too. It was making us all exhausted and miserable right along with her.

Finally, after the third or fourth round with this mass, and after Lucy's GI system appeared to have slowed to a permanent crawl, our GI and surgeon decided that she must have a leak somewhere in the new intestine that was constructed back in June.

Exploratory surgery was set up the day after her birthday and just a week before Christmas. We didn't even care about the timing, doing something to fix this was all we wanted. The plan was to find the leak and either repair it or redo the surgery entirely. The doctor would drain the mass of infection on her abdomen. It was also decided that they would place a PICC line (a central catheter in the arm that goes to the heart for intravenous feedings) and come home from the procedure on TPN.

Resorting to TPN is a long standing fear of mine. It sort of signifies the end of the road. Once you are on TPN its critically important you get off of it. Its a daily risk of infection, with the potential to lead to sepsis and death. And if that isn't terrifying enough, theres the fact that TPN is super hard on the liver long term which makes it an unfavorable long term solution for nutrition.

I had nightmares leading up to Lucy's surgery day. I envisioned the absolute worst case scenario, and fretted as though this all meant certain death. I grieved on the inside while feverishly trying to prepare for life after her surgery.

As it turned out, once our surgeon got in there, he couldn't find a darn thing wrong with her new intestine. He tried like heck to find a leak, but to no avail. So he closed her back up, drained the mass, and a PICC line was inserted so we could come home in time for the holiday.

And if that wasn't a gift enough, TPN turned out to be more of a godsend than we could have imagined. Lucy is so bright and full of energy. I see her cheeks plumping up and her mood improving. She's happy. She's just a 6 year old girl right now. Its amazing.

Don't get me wrong. TPN is a HUGE responsibility. It took 3 days just to learn how to take care of Lucy's line. We are clean, clean, clean. It takes a good 30 minutes to prep her bag and "make" TPN each day. She runs on a pump with a huge bag for 16 hours a day. We have a home nurse come in each week to change her dressing and draw labs to make sure her nutrient levels are "just so".

But, when she's not on that pump 8 hours out of the day, you completely forget there is anything not normal about this child. We all so desperately needed this break from cramming calories into an intestine that just won't work. Its like a vacation.

The plan is not for us to remain on TPN long term. Dr. G intends for her to use it very temporarily in the hopes that the total gut shutdown was due to the infection on her abdomen. He hopes that, after she heals and catches back up on nutrients, she'll be ready to just get back onto her j-tube feeds and see some of the benefits her surgery was supposed to have given her from the beginning.

We go back to see Dr. G on the the 8th, which will likely be when we discuss a formal schedule to get off TPN and back onto formula. I dread going back to multiplying hours by ounces by calories each day and striving to cram more and more in to reach some distant goal that seems completely unattainable. But for now, we are just going to completely enjoy our time right now- focusing on the healthy changes we see in our girl.