There and back again...

Mira's last hospital stay was so short and boring that I didn't have time to post about it before she got home! Friday she was coughing pretty hard, but all of her readings were good. Saturday, however, her oxygen sats were dropping lower than is really okay, so we took another pre-planned trip to the ER (oh, is that a wonderful arrangement! We call Gillette and talk with the nurses there; they tell us if they think we should go to the ER, and if so, we tell them what time we think we'll get there, and they give the ER a heads up so there's no waiting, and no guessing - just right to work on the issue at hand.) She was not "admitted" but stayed two nights under "observation." They gave her a little bit of blow-by oxygen the first day, and upped some of her variable medications (mostly nebulized ones for opening airways) and then sent her home yesterday/Monday!

Very nice.

There's a couple from our church who love to cook (and are very good at it!) who periodically approach me with two options for dates and two or three menu options, and we settle on one and put it on the calendar usually weeks in advance. Once again, it's such a confirmation of God's care for us even in the little details. That was a crazy day - with Matt and I meeting with clients for over two hours in the morning, then Matt running Bobbi to therapy, and after returning home going right to the hospital to pick up Mira. And I knew ahead of time that dinner was totally covered.

These reminders are so good as we look ahead. I'm working on a post looking at what's coming up this year. Phew.

50 pounds

Our Master Stacker broke 50 pounds! I know I haven't posted much about Krassimir over the past year, but he keeps on growing and developing - probably his biggest skill over this past year is a marked increase in his ability to wheel himself in his wheelchair. It's still not his preferred way to get around, but it's neat to see him gaining some independence. Our hope is that as he grows older he'll be able to spend more of his free time happily in his chair instead of only on the floor.

These days, though, he's very happy scooting around the house on the floor, and one of his favorite pass-times is collecting random items he finds on the floor and stacking them up...then dragging his creations around with him as he moves from room to room.

And, for the boy who was only 22 pounds as an eight year old, and with whom we had to fight for every ounce he gained at the beginning, hitting fifty is pretty exciting.

Homework

This is a topic that is so pathetic in its inability to give any sort of real update, but hopefully it serves to prove that we're still alive around here!

Bogomila decided over Christmas break that she was ready to try out a few classes at the public high school in addition to home schooling. She had a variety of reasons for doing so, but we were very supportive of her decision. In a three-week flurry we had a meeting with the team that would be working with her, chose classes, reorganized her private therapy schedule, and then had a snow day (which ended up costing two school days) at the end of the last quarter that pushed the much-anticipated start date back by a day because they had to use what was supposed to be the first day of the new term for finals!

Yes, we live in Minnesota.

So, last Tuesday was her first day, which she describes as a nervous day. Wednesday was "boring" and Thursday appeared to be a fine day, but homework as a little overwhelming to her that night. (We're working with her teachers to find the right balance of work taking into account her language limitations, and they've been very helpful!)

She's taking three classes, starting second hour (so doesn't have to get there until 9am, which greatly helps our morning routine which already involves getting Reuben up and ready for the bus by 7:15, Krassi by 8:20, and all of Mira's morning cares, in addition to a variety of other little people), and gets done about noon. She's taking an Intro to Foods class, an ESL English class, and one that she chose because it sounded "boring, but useful" called "On Your Own," which teaches goal setting and independent living skills. At home we're still doing math, history, a variety of odds and ends, and practicing English in a variety of ways as well.

Tonight she came home with a homework assignment for her foods class.

The recipe was simple, but that meant she could do all of the reading herself, even with her still somewhat limited English reading skills, and, since a smoothie that serves four doesn't go very far around here, she also got to practice her math skills by doubling it.

She figures she can go to school tomorrow and tell her teacher that her family ate her homework. 😋

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.

Phew

She's home.

Regarding the lack of posts, we've had an exciting week involving frozen water pipes (but not burst), a dead oven on Christmas Day, influenza, international guests, a day of 10 seizures out of Reuben after going 37 days seizure free, and probably more, but that's what I can remember right now. Oh yes - Bobbi had another round of Botox shots this week, too.

But anyway - she's home, and hopefully is going to stay that way for a while!

~~~

And four hours later I remember another one - Matt had to take Grandma for an uneventful (but long) visit to the ER on Christmas Eve. Phew. ;) I think there's more, but again, the brain is full.

On the lighter side

Meanwhile, life has to go on here at home even when Daddy and Mira are at the hospital.

Monday this week was cookie-baking-while-getting-school-work-done day. Gloria decided we all needed hats while we were working, so went digging in the little girls' hat bin and brought us our selections one at a time.

The update on Mira is that the infection has successfully cleared out of her bloodstream (yay!) and her platelet levels continue to slowly rise. Some of the other concerning levels are correspondingly dropping as her overall well-being is improving, so she's generally heading in a very good direction.

After losing one of her IVs last night they talked with us again about putting in a PIC line which gives them more secure access to her bloodstream both for her medication (which has to be intravenous for 14 continuous days, and missing a dose means starting over at day one) and for blood draws. When they talked initially about it, her platelets were still too low to risk it and they were not certain the infection was out of her blood, but with the loss of the one IV (and she's a tough poke), and the good trend on her labs, we decided to do the PIC line this afternoon.

That means that we now have the option of bringing her home. Her pneumonia has really been a non-issue with this hospital stay. Her lung x-rays aren't looking great, but symptomatically she's awesome as far as pneumonia goes. Even with the PIC line already in, we are still unsure of the balance of pros and cons of having her home before she completes her medication. Honestly, one of our biggest concerns is our very capable almost-two-year-old "nurse" who still has a touch of a runny nose and is very confident about things she really knows nothing about, but wants desperately to be involved in. Most of the worst of the nastiness that we've had with nasal junk appears to be mostly gone, but we'd like to get a few more days past that ourselves, and a few more days of steady out of Mira before we consider moving her home!

It's exciting, however, that "home" is an option on the table.