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.

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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!!)

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!!

What Mira's up to

Tomorrow is Tsvetomira's birthday. We plan to get as many of us as we can (hopefully all of us!) down to see her, though I don't know how many visitors at a time she can have in the PICU, so we may be going in shifts. ;)

One big difference between this hospital stay and her previous ones is the much greater range of positioning options they have for her, thanks to the work she's been doing with her physical therapist (yay Lori!) and to the things we've been doing with her at home. Here she is propped with pillows on her back!!! That's still not something we're comfortable doing at home because of how much trouble she has with her mouth secretions, but for short periods of time, under the watchful eye of her nurse, she can! And being somewhere other than her side is really good for her lungs. 

Because of spending so many years of her life laying on one side she has a "good" lung (the one on the right that was up) and a "bad" lung (the one on the left that was down), and the pneunomia she's dealing with now is in her left/bad lung. Soooo, when she's laying on her prefered side (her left side - the side she spent most of her life on) it's really tough on that bad/sick lung. However, when she's on her other side, then her good lung isn't able to do as much work, and all she's got is the bad lung, so even though it's better for the bad lung to be up, it's really tough on her!

So, she spends some time sitting in Daddy's lap, some time on either side, and some time propped on her back like you see above, and even some time propped in a prone position - also something that she's just recently able to tolerate at all thanks to Lori.

The last day and a half they have not been giving her sedatives, which means she's a little more agitated in those positions than she was earlier in the week, but overall its a good thing, because it means they think she can handle being a little more worked up because she is still moving in the right direction.

As you can see in the photo, she's still getting breathing assistance. Before we even talk about going home, she's got to be off that machine AND weaned off oxygen, so we're certainly still looking at a stay into next week. However, the last two nights have been good enough that Matt's decided to stay home for the night tonight (being in the PICU, she has a dedicated nurse watching her, and they can call if there are any concerns), because tomorrow morning, we've got Hope Kids tickets for the whole family to see Wonder! After that we'll stop through home to pick up the two little girls and Mira's birthday balloon and make the trip downtown to see our little birthday girl.

Still in the PICU

This is the first morning that Matt's reported that Mira's doctor says she appears to have turned a corner. This morning's x-ray was the first one that showed any signs of improvement. Up until now, the only thing that looked different on each day's image was the date!

Her blood work, and the various things they're tracking there (platelets, hemoglobin, CO2) are still not looking great, but also not trending worse. They're also going to be chasing a few other things related to why she's having such trouble voiding.

At the moment, the kids and I are going to be preparing a Thanksgiving feast for just us without any help from Daddy. That means I get to grill. It was going to be a pretty low-key day anyway, as we have no family coming, and nowhere to go, but with our new plans, we're just looking forward to having DADDY come home from the hospital to eat supper with us tomorrow! He will be family enough, and we'll be grateful for that!

Many memories surrounding this week anyway...it was seven years ago today (the day before Thanksgiving) that Reuben was at Gillette for his first time as a 16 month old baby and we witnessed his first two tonic/clonic seizures and got a diagnosis of epilepsy. It was seven years ago tonight that I stood in the hallway at Gillette on my way to the bathroom (being 10 weeks pregnant with Rinnah) and realized that I was no longer afraid to adopt a child with special needs, because I had just learned that morning that I already was a mother of a child with special needs. Seven years later, here we are with a child who is in our family as a result of that moment of understanding...again spending Thanksgiving at Gillette.

(I've written more about that hospital stay and Reuben's diagnosis HERE and HERE when I first started this blog almost five years ago.)

Blood

This all started with blood a week ago - I didn't have time to post about it, but in the early hours of last Sunday morning, Mira had a doozy of a bloody nose - bad enough that we called 911. Now, it's not really so much that a bloody nose itself is cause for a 911 call. She's had them before, but this one was really running, and in order to pinch her nose to stop the continuous flow of blood, we were cutting off part of her ability to breathe, meaning her oxygen saturations were in the low 80s. In other words, not okay. And we were poised there thinking she could either stop bleeding and get better, or it will keep bleeding and her O2 could tank, so we called for help.

We and the paramedics decided to take her in a leisurely fashion in the ambulance to the ER, so Matt rode down there with her while I got the rest of the house up and off to church. I got a call from him and picked both of them up during Sunday School (nothing like a church full of people to cover for your kids while you run downtown!!)

We had no way of knowing really how much blood she had swallowed...or aspirated...so we were just to watch her through the week and take action if needed.

She wasn't great all week - very restless, and even more trouble voiding than usual, but nothing that really seemed more than we could continue to care for until yesterday. She had two more nasty bloody noses (not as bad as Sunday, and we'd learned some tricks to avoid some of the aspiration risk), but she didn't really recover from there, despite upping her respiratory routine from the green to the yellow zone, so last night we decided we needed to take her in, and it appeared to be at a good time.

She does have pneumonia, which they are treating with antibiotics, but had ANOTHER nose bleed this morning. Perhaps simplest is just to share Matt's most recent email:

We are not in a great place with Mira. Platelets are very low, so is hemoglobin. Just started a blood transfusion. ENT coming next to examine her nose and cauterize or pack to get this bleeding under control. She had another bleed this morning.

They are venting her stomach again and it is all blood.

Not a life and death situation, but she is not doing well at the moment.

Poor girl is in good Hands, but having a tough day.

Two other things

Since I'm here, I should tell you that Bobbi went down to the treadmill today with her biggest goal yet: 35 minutes!!!

Did she do it?

Well, no. She walked for 40!!! consecutive minutes on that treadmill! Yes, on the slowest speed, but that still takes some serious endurance.

AND, Reuben is now 29 minutes away from going 8 days without a seizure!!!

Another hospital run

Soooo, Mira and Dad are down at Regions ER just checking things out. It was a slow decision (as in, not the sort of emergency where you have to get right there right now. We spent all day hemming and hawing), but we're glad she's there. They've got her on oxygen and put in an IV for blood draws. Still don't know if they'll admit her or send her home, but it's where we are now, so instead of me finally finishing the (short and rather truncated) post I almost had almost ready to go, it will wait once more, and you get this instead.

Just got a text from Matt and it sounds like they want to admit her to Gillette.

Walking update

This is a post simply to attempt to satisfy many of you who want to know how Bobbi's walking is coming along! No real writing, just a bit commentary on the videos.

The pool is amazing. When you're up to your armpits in water, you only weigh about 20% of your normal weight, AND have the benefit of the water itself slowing down the effects of gravity. It's ideal for learning. Bobbi's therapist said to me once (when she was working in the pool with Krassi) that every child that she's gotten walking independently in the pool she has also been able to help do at least some independent walking on land. Krassi didn't get to the point. Bogomila, however, appears to be in the other category:



Bobbi gets down to the treadmill almost every day that she doesn't have physical therapy. I took this video a little over a week ago. She walks at .6 mph, which is the slowest the treadmill goes. This summer, that was too fast for her. She's since worked herself up to 5, 10, and sometimes even 15 or 20 minutes at a time. Since this video was taken, she's been pushing herself, and usually walking at .8 mph, and twice now pushing for all she's worth at 1.0 mph! That's a big increase! Her time isn't as long (yet) at those speeds, but it's exciting to see her strength and endurance increasing, and her comfort level with the motor planning involved in walking becoming more natural.



She does therapy in the pool once a week, and twice a week on land at the therapy center (also known as my second home.) They do a wide range of things there: lots of stretching, muscle isolation (she can now make tiny wiggles with the toes on her right foot!!!) and a variety of strengthening and balancing exercises.

The following are a few from today. I was especially proud of the one where she takes a few steps with minimal support from Lori and sits down in her chair.

So proud

Krassi wowed me tonight with this:

I realize it's a little hard to see in the photo, but that's HIS OWN hand holding the bear cup for drinking!!! We'd been playing/working for a few minutes with a trial augmented speech device for him that is either touch activated OR eye-gaze activated, and are beginning with a field of two choices, both intended to be rewarding to build the cause and effect in his mind. Tonight's options were drink and jello. I was anticipating jello every time, but after the first bite, he told me drink (with his hand). So I gave him the drink, not sure if that's what he really wanted, and not only did he drink it, but he took it from me and tried to put it back in by himself when I was done!

He needed a bit of guidance from me, but he DID IT!!!

Doesn't he look like such a big boy taking care of feeding himself!

It's a major deal for a boy who came home four years ago channeling all of his angst and anxiety and anger into his mealtimes. Just getting him to accept being fed without a major breakdown was a big deal at the beginning. The last months have moved to a much wider variety of textures, including larger soft chunks of things in his food that he's able to chew and manage safely with his tongue. Seeing him giving himself a drink tonight was pretty delightful. Even his older sister was excited and proud of him!

[As a side note there, one thing I've admired about Bogomila is that from the start, she has an intense loyalty to her family. Yes, there are some who annoy her more than others, but she has a definite sense of solidarity with her brothers and sisters, and seems to have a unique connection and almost sense of camaraderie with Krassimir and Mira because of the shared elements of their history, and her sensitivity toward them, and her ability to see them as precious persons with feelings and rights and value is really beautiful.]

Seventy-one

Bobbi's birthday is today!!! Her first birthday home with her family. Although there was some Bulgaria-sickness, the day was in general a great success, including some fun messages via Facebook from some of the people she misses the most from her old home.

We started with special breakfast cereal (chocolate bunnies), and a few presents from family members, then shared brownies with her therapists (Lori's birthday is tomorrow!) and spent the afternoon baking cakes in preparation for her big party tomorrow.

Way back when we first met her, we'd talked about restaurants, and told her we don't really go out to eat much, but that sometimes for birthdays or something special like that we will, so she was all ready to go out tonight.

There's a pretty decent Mexican restaurant very close to our house. Rinnah left today (with my mom) to visit my sister and family in England, so we sent Owen on his bike, and the rest of us fit in Bigger Blue. Amazingly, we had a relatively peaceful dinner! The photos aren't so great, but you can see all of us...

 ...AND, the fancy birthday hat they brought with Bobbi's complimentary dessert and Happy Birthday song!

(And where did the title of this post come from? Well, it's Bobbi's way of dealing with the repeated question from Matt's mom: Oh, it's your birthday? Well, how old are you? Bobbi: Fifty-five. or Fifty-eight. or Eighty-nine. or One hundred twenty. but her favorite was Seventy-one. Close to seventeen, but just different enough to make the repetition something humorous, and thus tolerable. We're so proud of the way she is learning patience!)