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!

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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.

Bowling

Purely just for fun, here are a few photos of our night out with the kids' 4H club for their annual "Bowling and Cookie Exchange" Christmas party. They rent a small six-lane alley in the basement of an old school, and we get the whole place to ourselves. Except for Mira, who was just as happy spending a quiet evening at Gillette, all of us made it!

 Reuben loves to watch the pins go "Down"

Krassimir is quite the bowler - very into what he's doing!

 Evania, too, takes the job quite seriously - always has.

Krassimir had the highest score of anyone there that night.

The girls were pretty evenly matched.

My dad's response when we sent him this photo? "Beware the Bulgarian Bowler!"

Owen was ready to try out a variety of strategies, and wasn't ashamed to make the most of the ramps when necessary!

Gloria mostly spent the night proudly stepping down off this little stair at the edge of the bowling floor. Oh, the skills of a not-quite-two-year-old!

She "looks" good...but...

So, the update on Mira.

On the outside, she looks great. Breathing room air with no assistance, sleeping peacefully, good color, relaxed. But on the inside, not so much. She does have mild pneumonia, which after three days of antibiotics is just last night starting to show some slight improvement, but the bigger deal is the UTI (which we've now learned that vomiting can be a symptom for a UTI).

After a doozy of a time getting a urine sample, including six failed attempts at cathing, they finally got a sample, and after some more time, got the results of the culture last night, and it's E coli, and a nasty, drug-resistant form of it. At 11pm last night the doctor called us with the results, and with their proposed plan of attack - there's only really one good drug to try that the culture seems to respond to, but it's a close cousin of the one that they think caused the severe anaphylactic reaction during her first ER visit back in the spring. As a precaution before they started it, they wanted to move her to the PICU so they would be pre-armed with staff and all necessary medical interventions in the case that she did has a negative reaction to this med, too.

The even more important reason to get the infection under control and soon is that there are signs that it has spread to her blood. Definitely not a good thing.

Thankfully, she did NOT have a reaction to the new med, so they moved her back to the regular floor this morning, and hopefully this one will do the trick.

Anyway, we're back to thinking this is going to be longer than just a few days' visit to our favorite hospital.

And....they're gone again

Mira and Dad are taking a jaunt back to the ER tonight. Possibly just for some blood work (why did she have another bloody nose last night?) and an x-ray (why were her sats a little low this morning, and why was she breathing a little more rapidly than usual last night??) and just a general once-over (why has she thrown up four times over the last three days with no other signs of illness? We know she has some GI struggles, and that often her vomiting is related to trying to fill a dirty diaper, but four times in three days is out of the ordinary for her.) And, then again, possibly for another inpatient stay.

I told Matt as they were leaving that I'm not sure which I would choose at this point, so I'm glad I'm not the one who does the choosing.

Mira in street clothes

Above is the title of an email I just got from Matt.

Below is the body:

We will be on our way home once all the paperwork is done.

 

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It's been a long 21 days!!! We're glad she's coming home.

Mira has made the move

This afternoon, Mira was moved from the PICU into the regular neuro wing of Gillette. She is still on the bipap nasal mask, but is currently not getting any supplementary oxygen. Still a little ways to go before she is home, but we are definitely closer.

Fourteen and Fifty

Today is 14 days in the PICU for Mira, and yesterday Bobbi walked on the treadmill for 50 minutes consecutively! She's aiming for an hour, and it sure seems like a reachable goal. Did I mention that she hit an hour cumulatively the other day? 40 minutes, a break, 10, a break, and another 10.

We're not sure what goal Mira's working toward, but this is so far her longest hospital stay while with us, even if you count the two stints in the spring that were separated by a week at home.

This morning Rinnah and Evania and I are going to head down and spend the day with her so Daddy can be at home for a change, and so we get a chance to be with her.