January 10, 2016

30 pounds and counting....

It's been a little while since we left U of M, but since several people have asked, I wanted to do a quick update. I meant to do it just a day or two after we were discharged, but life happened and now we're 10 days out. Since then we've actually had a few interesting things happen, so I guess I can just cover them all now.

By December 31, we were at full feeds at U of M and running them only 12 hours/day, which was their goal for when we went home. We had expected them to do additional contrast testing, and even though we and our adoption doctor wanted to have them done, the GI doctor didn't think it was necessary. She was concerned it wouldn't show anything new since we'd only just started feeds, and she didn't want Meili to be exposed to any extra radiation. We admitted that was a valid point. Once we knew there wouldn't be any testing and it was the last day of the year, we pushed to be discharged to avoid spending our entire health insurance deductible on the first day of 2016.

Meili was tired of being in the hospital.

And she was eating well by mouth.

She loved the play room, and the visiting therapy dog, but we were ready to go.

We were discharged on the 31st, and made it home just in time to ring in the new year with some friends. We were exhausted, but it was great to talk to someone besides doctors and nurses. The feeding tube came home with us and will be in for a minimum of 4-6 weeks. We run it 12 hours a day, usually from about 7pm - 7am. 

We've been having Meili sleep in our room so we can hear the pump if there are any issues, and we've learned the hard way what happens when you fill a small child with lots of fluid at night. Between bathroom trips (which we have to help with since she can't carry all the gear), pump alarms and Meili being a very LOUD sleeper, it's almost like having a newborn again!

And I'm still cringing every time I put the formula into the feeding bag. Because of this whole process, I've learned a lot about formula and NJ tubes, including the lack of availability of high-quality nourishing options that don't contain garbage ingredients. Meili's tube is an NJ (Nasal-Jejunum), and unfortunately it would be very difficult to feed a blenderized real-food diet through it, so we're pretty much stuck with the pre-made stuff. Despite my issues with it, adding those extra calories every day has proved to help - as of last Monday she was up almost 2 pounds!

Tomorrow we'll check the gains from week-two, although as far as feeding goes, this certainly wasn't a perfect week for us. We had a bit of an "issue" on Wednesday that resulted in Meili's tube getting pulled out about 6 inches. Jon was right there and instinctively stuck it back in, but to no avail. We did an x-ray and determined that it had been dislodged from the jejunum and was coiled in her stomach.

Not good.

Both our primary care doc here and our doc at U of M advised that if they couldn't maneuver it back into place (which was unlikely) it would need to be pulled and new one inserted, which would mean they would have to put her under again.

So back to the hospital we went, not to U of M but down to Sioux Falls. I don't even know how to describe our experience here, so in the interest of not saying something I'll regret, I'll try to sum it up briefly. The tube knotted in her stomach during the "maneuver" so they brought in two interventional doctors who knew nothing about her past, her history, or really anything that was going on. 

This guy here, is my hero for helping restrain her while she screamed for 90 minutes, while multiple tubes were pulled and inserted over and over again, with no medication, and without putting her under.

I couldn't handle it and hand to step away. It was by far one of our toughest parenting days, and certainly our most difficult medical scenario. We were reminded again why we chose to take our daughter to U of M.

Thankfully, some wonderful nurses were there and felt so bad after the whole ordeal they let Meili go to big prize closet. She's now the proud owner of a lovely American Girl named Grace.

She was starving, having not eaten for 8+ hours and asked for noodles when we were done. Jon commented she could have asked for a car and he would have gotten it for her for all she'd just gone through.

A few noodles did make everything a little better. 

So we're back to "normal" now, trying to get some extra calories in this cutie. Hopefully despite our setback this week, we'll see some gains. In the mean time, we are trying to be very, very careful to make sure that tube stays exactly where it's supposed to!


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