Some firsts

Here are Leah and Rinnah saying goodbye to Mira as Mom and I get things packed up for another trip down to the ER with what looks, from the outside, like a perfectly peaceful, contented little girl.

We were getting some funny colored discharge out of the "g" part of her g-j tube (she transitioned to the g-j tube near the end of her last hospital stay to help avoid vomiting and aspiration that can lead to pneumonia).

Mira underwent a variety of tests, labs and scans. In the end, they all came back clear with one exception. She did have some blood in her stool. Most likely what we saw this morning was old blood coming out of her g-tube, but by the time they tested her stomach contents for blood there was none remaining. Obviously, any time there is blood in the stool or stomach, the question is where is it coming from?

So here is the best theory we could come up with. At discharge, Mira's paperwork said that all of her medications were supposed to be given in her j-tube and the nurse confirmed that that was how she had been getting her medication since her g-j tube was placed. However, on closer reading of the discharge papers when we got home on Sunday, we noted that her Kepra (anti-seizure) med was still noted as being given through her g-tube. So on Tuesday when a nurse called to check and see how Mira was doing, I asked about that as well as a few other questions. She conferred with the doctor and got back to me clarifying that the Kepra could be given through the j-tube, but her Zantac needed to be given through her g-tube, even though it had been noted as j-tube.

That should be pretty obvious, Zantac is for stomach acid, so bypassing the stomach doesn't do much good. So for at least 2 days and possible up to 6 days, Mira was not getting Zantac in her stomach and the stomach acid was irritating the stomach lining to the point of bleeding. As of Tuesday night we had started giving her the Zantac in her g-tube again and that is when we first noticed the dark brown liquid coming out of her g-tube and then we noticed it again this morning, prompting some phone calls and the trip to the ER. By the time they drew stomach contents for lab work, they were whitish with only a few dark spots and tonight when I gave her her medicine, the stomach contents were clear.

So that brings us to our first first. This is the first time Mira has been taken to the ER and the sent HOME rather than being admitted to Gillette.

The second first is related to Reuben. Since November 11th, he has only had 13 seizures. That is coming after months of 6-20 seizures a day every day. On November 20th, he had 3 isolated seizures and then went for 37 days with any seizures. Then he got sick with one of the bugs that has been running our house lately and he had a high fever and had 10 seizures in one day. That is a first for Reuben. Reuben has never had seizures when he has had a fever. Typically, Reuben has fewer seizures when he is sick, but having seizures with a fever is quite common. To be classified as having epilepsy you have to have two or more "unprovoked" seizures. If a child has seizures when they are sick and have a fever, that is considered a provoked seizure and does not mean that child has epilepsy. I am devoting a fair amount of time to this, but this is VERY different.

The third (and fourth) first has to do with Bobbi and her walking. She has been steadily getting stronger and going longer and faster on her walking. She has been able to go for an hour at .6 miles/hr., which is the slowest speed our treadmill goes. Recently she has been going .9 mph for about 30 minutes. Yesterday at therapy, she went at 1.0 mph for 10 minutes and then today when at 1.5 mph for 2:30 before she collapsed from laughing.

Just a bit late

Two days down, and Mira's still doing great here at home. No issues whatsoever, and a good number of blissfully contented looks on her face! Her sisters picked out pretty lotions for her for Christmas, and every day she's gotten her hands or feet (or both!) rubbed. We don't know about her sense of smell, but it's got the dual benefit of smell and touch, so it's good.

I meant to share this photo (and the rest of the day!) weeks ago, and just glanced at the blog and realized I haven't! So, with that, here is our 2017 family Christmas photo. We're missing Mira in the photo (sad), and are even missing the photo of Mira that we'd printed out to bring along with us to the event to include in the picture...and forgot the photo of Mira at home largely because at the time we were getting ready to leave the house, Matt called saying he was still at the hospital meeting with doctors and would meet us at the venue instead of getting home to help me get everyone ready and into the car. So, we're missing her photo in the picture for a similar reason to why we're missing her - the hospital just throws many kinks into the system!

But anyway, here are the Glewwes at Christmastime:

No. Owen's not really that tall. But he sure wishes he was! And Bobbi, who doesn't really like photos, decided going into the day that her black winter coat was close enough to my request to everyone to wear black, red, or white. But that's us! So...Merry Christmas (a little late!) to all of you!

And maybe I'll have a chance to post about what we were doing before we took the photo...every year the Bulgarian School some of the kids are part of put on a Christmas program followed by a potluck dinner, and I've got some fun photos and anecdotes to share!! But not tonight.