Saturday, December 16, 2017

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.

Wednesday, December 13, 2017

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.

Saturday, December 9, 2017

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.


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

Sunday, December 3, 2017

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.

Saturday, December 2, 2017

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.

Monday, November 27, 2017

BiPAP at home (now with a Mira update)

There is so much inspiration for the imagination in the hospital!
Here is Rinnah's baby (the one who's also had g-tube surgery) on her BiPAP machine.

We got out to the grocery store this morning, and both Rinnah (age 6) and Evania (age 3.5) asked if they could use some of their money from Oma to buy a pack of gum. Sure. But then the first thing they did when they got home was to dump all the gum out into another container so they had their own BiPAP machines for their own babies.

I suppose I should let all of you  know how our real patient is doing, too, huh?

Well, she's still in the PICU, and still using her BiPAP machine, though was able to spend some good hours today with just the nose mask instead of the nose and mouth mask. She is down to 30% oxygen being supplied to her (down from 40% at the beginning of the week, and normal air is 21%) and her lung x-ray again today looked just a little bit better. The doctor was pretty excited for Dad to see her x-ray this morning! The right side looks almost perfectly clear, and the left still has more to go, but compared to the initial image from admission, there is obvious improvement.

We're planning on spending the next week in the hospital. It continues to be the smoothest hospital stay we've had because of our decision to purchase Matt a laptop computer that is sturdy enough to handle his work software, so he's able to be the one at the hospital AND still be getting some of his work done. It's not everything he'd like to be doing, but it's something, and it's more than during Mira's previous stays when I was at the hospital so he could be home working...and caring for the other eight children!!!

We are grateful for things like the promise of a meal for this Thursday that was made weeks ago before we had any idea Mira would be in the hospital, and for our pastor who ran out to the store Saturday night when we were totally out of milk...and apples...and tomatoes. And Randy and Steph - so many pieces of our Thanksgiving meal were rounded out by the freezer items you left with us earlier this fall! Yummy fresh corn, peeled and sliced apples to quick put together a pie, pickles, and I thought there was something else, too.

These times when our family is not together are tough, but every day we're glad that Mira is here with a scattered family rather than alone. Even though Mira, with her severely limited access to her world, may not necessarily know that her Daddy is there, everybody caring for her knows her Daddy is there. I know she would get great care there at Gillette regardless of her situation, but still - as an orphan she had no advocate, no one who would say something if the level of care she received was anything less than the best. Now she does have an advocate - a Daddy who loves her and knows her and who spends most of his day at her side (except for the few hours every day when he comes home for the rest of us! Gloria at bed tonight, with both of us there, was happily saying, "Daddy-Mommy. Home. Daddy-Mommy. Home." We all like having Daddy around!!)

Sunday, November 26, 2017

Happy Birthday, Mira

What a way to spend your twelfth birthday...

But they do a good job at Gillette with things like birthdays. We piled everyone into the van around lunchtime to go visit Mira (after watching Wonder with Hope Kids), and the first thing we saw was a big sign on her door - you can't read it well in the photo, but above the balloons, it says, "Happy Birthday, Mira!"

Special  H A P P Y   B I R T H D A Y  lights were hanging from the soffit...
 And the girls hung up the notes and cards they had made for her...with medical tape because that's what was in the room!
 We had brought a balloon, but someone at Gillette had already done so, too, so now she has two.
 And even though she may not know that we all made it down there to see here, WE do, and it was so good to hold her little hand and kiss her little cheek (the tiny part that was exposed around the mask from her BiPAP machine).
She's still a pretty sick little girl (as evidenced by the fact that a week later she's still in the PICU), and I'm exhausted, so this bare bones post is all you're going to get, but I thought it was necessary to share our little birthday celebration with all of you!!